Exceptional Family 2015

2015

Exceptional

FREE Commonwealth Council on Developmental Disabilities

Independence Integration Inclusion Chastity Ross of Richmond with her children Julien, 7, and Hunter, 11 Photo by Robin Allen Photography

320 Statewide

Resource Listings A Speciality Publication of

Family Ky Exceptional

2015

Independence, Integration, Inclusion

features 4 10 14 16 18

Letter from the CCDD Meet Executive Director MaryLee Underwood Real Work for Real Wages Employment First in Action What Disability?

Chastity Ross Is Defined by Her Abilities Disability Etiquette Norb Ryan Provides the Right Do’s and Don’ts Fetal Alcohol Syndrome Lexington Teen Makes Major Strides

Editor..........................John Lynch of Lexington Family Magazine

Graphic Artist.......Daniel Morgan

of Lexington Family Magazine 2

www.lexingtonfamily.com

22 24 28 30 32

Gone But Not Forgotten Frankfort Hospital Cemetery Gets a Makeover Sibling Ledership Network Am I My Brother’s Keeper? Yes! Community of Sharing “Bulldog” – Everyone Knows His Name Second Sunday Playgroup Social Time for Children and Parents Resource Directory 320 Resources Across the State

2015 “Exceptional Family Ky” is published by Lexington Family Magazine, Central Kentucky’s premier parenting publication.

138 E. Reynolds Rd. # 201 • Lexington, Kentucky 40517 (859) 223-1765 • www.lexingtonfamily.com • info@lexingtonfamily.com

Independence Integration Inclusion

in all aspects of community life.

The Commonwealth Council on Developmental Disabilities is a dynamic mix of people with unique backgrounds and experiences. Members include 16 governorappointed individuals with disabilities and family members of individuals with disabilities, as well as representatives from major state agencies that serve people with developmental disabilities.

Current CCDD Priorities:

• Education nt • Employme • Health y Supports • Communit surance, • Quality As ination, Self-Determ and Safety

Get Involved Today Advocate... Volunteer... Provide Support

And consider joining the CCDD Council Info: (877) 367-5332 or visit www.kyccdd.com

2015 Exceptional Family KY

3

Letter from the

C C DD

G

reetings from CCDD’s new Executive Director! I was honored to take on this role in June 2014, after serving as the Council’s Public Policy Advisor for the previous year.

Though relatively new to the staff, I have a long history with related issues. Nine years ago, I became “Carter’s Mom.” Carter is an amazing young man who loves to paint and swim, and has an incredibly strong spirit.

He also has mitochondrial disorder, which is a genetic condition that causes a host of related challenges.

Through him, I have encountered a whole new world.

My first connection with the Council was through Project SAFE, a multi-disciplinary collaboration working to end abuse of individuals with disabilities.

Project SAFE brings together disability-related organizations, victim services providers, criminal justice professionals and others interested in increasing safety and accessibility for everyone.

I helped launch Project SAFE while working for the Kentucky Association on Sexual Assault Programs, where I served as Staff Attorney and Legislative Liaison from 2001 to 2013.

In all, for more than 20 years, I worked to protect the rights of people who had been sexually assaulted and abused. The broad base of policy, 4

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advocacy and administrative skills I developed are very useful in my new role.

As an attorney and advocate, I developed a strong passion for public policy.

I love working to improve the laws, policies and practices that shape people’s lives.

I love digging deep and finding innovative solutions. That is why I love working with the Council.

The primary purpose of the Council is to ensure that individuals with disabilities and their family members play a prominent role in developing services and community supports that promote self-determination, independence, integration and productivity.

We do this by (1) working to improve public policy and (2) developing and supporting innovative programs, such as the Peer Support Network, Future is Now Project, and the Take Your Legislator to Work Project.

It is truly a pleasure to work with the Council, which is a dynamic mix of people with unique backgrounds and experiences.

Members include 16 governorappointed individuals with disabilities and family members of individuals with disabilities, as well as 10 representatives from major state agencies that serve people with developmental disabilities.

Since governor-appointed

MaryLee Underwood CCDD Executive Director

members serve limited terms, we are always accepting applications from individuals with developmental disabilities and family members.

If you would like to learn more, please visit our website at www. kyccdd.com or call us at (502) 5647841.

I look forward to working with the Council for many years and invite you to get involved too! t

how to

become a CCDD member Members include people with developmental disabilities as well as family members and guardians of people with developmental disabilities.

Council members are expected to attend quarterly meetings that last two to three days, and other events throughout the year.

A member serves a threeyear term and is limited to six consecutive years of service.

Info: www.kyccdd.com or 1-877-367-5332.

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5

MARK-40643a APP_10/21/2014

Meet the CCDD...

Top Row: Camille Collins, Ashley Wink, Colleen Payne, Lindsay Jones Middle Row: Lynne Flynn, Keith Hosey, Harold Kleinert, Evan Charles, Front Row: Lela Rose Hale, Anne Weaver, Sondra Gilbert, Claudia Johnson, Janell Turner, Roxanne Holbrook, Melissa Hardison, Margaret Reed In Front: Joe Cowan, Chastity Ross Not pictured: Teresa Brandenburg, Courtney Cooper, Dina Nelson, Tristan Parsons & Sherry Sanders The mission of the Commonwealth Council on Developmental Disabilities is to create systemic change in Kentucky that empowers individuals to achieve full citizenship and inclusion in the community through education, capacity building and advocacy.

www.kyccdd.com CCDD is a dynamic mix of people with unique backgrounds and experiences. Members include 16 governor-appointed individuals with disabilities and family members of individuals with disabilities, as well as representatives from major state agencies that serve people with developmental disabilities.

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2015 Exceptional Family KY

7

CCDD Moves Into New Offices in Frankfort

F

or the first time in the 44-year history of the Commonwealth Council on Developmental Disabilities, the organization has independent offices.

In the fall of 2014, the CCDD moved from its quarters in the old Buffalo Trace Distillery warehouse on Fair Oaks Lane into its new offices at 32 Fountain Place in downtown Frankfort.

The difference is striking. After rattling around in a tiny corner of the massive warehouse – which was never designed for offices – the CCDD now has a warm and attractive space next to the Capital Plaza Hotel.

The roomy office covers 3,000 square feet to accommodate eight employees and includes two meeting rooms that seat 16-20 people each.

A break room off the meeting space will provide privacy for personal care

attendants, who accompany some Council members.

“For the first time we’ll be able to host our community partners,” CCDD Executive Director MaryLee Underwood said.

“We are glad to contribute to our community in this way.”

Since moving in, the staff has been busy decorating the walls with artwork, which went up in time for an open house in November.

The central location gives the Council more visibility in the community while the offices provide newfound privacy for staff members.

“It’s very exciting and marks a whole new era for the Council,” Underwood said.

“There is a lot of positive energy and we are re-invigorated. We are excited to build this home for our Council members and staff.” t

Council members Dina Nelson and Lindsay Jones created artwork at the CCDD’s open house for its new office in Frankfort.

CCDD 2015 Calendar Other 2015 Dates

2015 Quarterly CCDD Meetings (All Meetings will be held in Frankfort) • February 5 & 6, 2015 • May 7 & 8, 2015 • August 6 & 7, 2015 • November 5 & 6, 2015

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• • • • • • • • • • • • • •

February 5 – 874K Gubernatorial Forum, Frankfort Civic Center (10-1:30 pm EST) March – Developmental Disabilities Awareness Month March 13 & 14 – Kentucky Self-Advocates for Freedom Conference, Clarion Hotel, Lexington March 18 & 19 – The Arc of Kentucky Annual Conference, Louisville April 13-15 – National Disability Policy Seminar, Washington, DC April 30 – Unconference on Sexuality for Those of Us Who Are Disabled, Lexington May 21 – Old Frankfort State Hospital Cemetery Clean-Up, Frankfort May 30-31 – National Sibling Network Conference, Galt House, Louisville June 1-4 – National AAIDD Conference, Galt House, Louisville July 26 – ADA Day (25th Anniversary of the Passage of the Americans with Disabilities Act) October – National Disability Employment Awareness Month Oct. 5-9 – Self-Advocacy Leadership Academy, Nashville, TN (ASAN & TDDC) Nov. 29 – 40th Anniversary of the IDEA (Individuals with Disabilities Education Action) December 3 – International Day of Disabled Persons

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The Arc of Kentucky is statewide grassroots organization that works to ensure a quality life for children and adults with intellectual and developmental disabilities. We do this by focusing our efforts on P.E.O.P.L.E!

P protecting rights encouraging E inclusion optimizing O supports promoting P choice L lifting expectations E educating communities Sixty years of advocating, supporting and empowering people with disabilities & their families

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502-875-5225 1-800-281-1272 www.ArcofKY.org ArcofKY@aol.com

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Providing behavioral health, intellectual & developmental disabilities, and substance abuse services to the citizens of Central Kentucky for over 45 years.

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9

Real Jobs for Real Wages

CCDD Supports National Employment First Movement

E

mployment First is a declaration of both philosophy and policy stating that: Employment is the first priority and preferred outcome of people with disabilities.

Employment First is a national movement to change expectations about work for people with disabilities. The Commonwealth Council on Developmental Disabilities is happy to join a wide range of local, state and national partners in supporting this movement.

Employment in integrated workplaces is the preferred outcome for all working age citizens with disabilities regardless of level of disability.

That means people with disabilities working side-by-side with people without disabilities, earning regular wages and benefits and being part of the economic mainstream.

To make that happen, it’s crucial that people with disabilities have the level of support that is needed for them to work toward and potentially attain the social roles they seek.

That also applies to those seeking to further their education at a college or university to improve their options for work.

The following three stories are snapshots of Employment First in action.

“To provide less support than is needed is unacceptable.

To provide more support than is needed is disrespectful.”

[David Duvall of Frankfort]

S

pride, pleasure and a paycheck

usan White of Frankfort always knew that her younger brother David Duvall, born three months premature 53 years ago, had much to offer. But he surprised even her.

David has cerebral palsy, uses leg braces and a walker and has some cognitive delays, but that hardly defines him.

He is an avid and accomplished reader – he particularly enjoys books about birds and cars – has an exceptional memory, roots avidly for the Lexington Legends baseball team and is a remote control car enthusiast.

He pursues those hobbies when he’s not on the job as an administrative assistant at the Division of Developmental and Intellectual Disabilities for the Cabinet for Health 10

www.lexingtonfamily.com

and Family Services in Frankfort where his sister is an Assessor.

In fact, in 2007, David won the Outstanding Administrative Assistant Award.

For a man who had little interaction with the larger Susan White with her brother, David Duvall, community until he who works as an administrative assistant in was nearly 40, David Frankfort. has come a long way. but eventually attended public school Like many with where he graduated high school in disabilities born a generation or two 1983 with a regular degree at the age ago, public school was not an option for of 21.

David at first. He attended a privately He stayed at home with his parents funded school for kids with disabilities

Real Jobs for Real Wages

[Daniel Gilbert of Ownesboro]

Working on a College Degree

M

y name is Daniel Gilbert. I am 21 years old and have Duchenne Muscular Dystrophy – a genetic disorder that gradually makes every muscle in my body deteriorate.

Everyone notices that I am in a wheelchair. It’s something I must face every day.

This can be a serious challenge in my daily life, but overall I am still a normal person.

I have hobbies and I have friends just like every other young adult.

Daniel Gilbert has earned his associate’s degree from Owensboro Many of my hobbies include Community & Technical College and is working on a bachelor’s music-based activities such as degree in computer information technology at going to concerts, singing and Western Kentucky University. playing guitar.

I also try to be social. I am thankful Rehab, which gave me the opportunity many job interviews. to have many of the services in place to have assistance on campus so I It does seem to be harder to find in my daily life to ensure success in could be more independent. employment being disabled, but I am life, even with my medical condition.

Assistants were available to help me confident that if I keep putting myself I receive a large portion of help from open doors and be around me in case out there, I can be as successful as the Hart Supportive Living Program of medical emergencies while I was on possible. and the Home- and Community-Based campus.

Job opportunities will open up.

Services Waiver, which allows home I now attend Western Kentucky I come from a family of hard health workers to assist me with University with plans to earn my workers. making sure my daily health needs are bachelor’s degree in computer My parents taught me that I could met. information technology. accomplish anything I wanted even These programs are lifesavers I hope that degree will enable me to under extreme adversity. because they allow me to have more be an important part of the job market Life is not about the misfortune independence in my daily life. in the foreseeable future. you are faced with – life is all about I also am a college student. I recently Last semester I was involved with overcoming misfortune. earned an associate’s degree in applied an internship program through We as individuals can’t change what science at Owensboro Community Owensboro Community & Technical we are born with.

College.

College that allowed me to work at But we can forge a path to greatness I was fortunate to have assistance City Hall for the semester with the if we believe in ourselves. from Green River Area Development Information Technology department.

As the great poet Robert Frost once District (GRADD), which awarded Being able to work is my longterm said, me a grant that is available to help goal.

“In three words I can sum up disabled individuals afford to attend I have spent many hours researching everything I’ve learned about life: It college. potential job openings and I have had goes on.” t I also received help from Vocational 2015 Exceptional Family KY

11

Real Jobs for Real Wages

[Donna Kouns of Lawrence County]

Assistant at County Attorney’s Office

I

t took until she was 60 years old, but when Donna Kouns of Lawrence County was hired for her first job, she couldn’t have been more delighted.

In 2014, Donna joined the staff at the County Attorney’s office in Carter County where she handles a variety of responsibilities.

During her one-day a week schedule, she helps with filing and the mail, and cleans around the office.

She enjoys all those tasks – and the salary that comes with it – but her biggest satisfaction comes from her interaction with her fellow workers.

“I like the job and the people there.

They treat me good,” said Donna, who has cognitive delays stemming from a childhood illness.

“My favorite thing is meeting the people.”

The staff has embraced Donna and included her during last fall’s election campaign. Donna attended rallies and parades, and enjoyed herself immensely.

She shared those joys with her closest friend, Linda Williams of Louisa who is a house manager with Crossroads of

Hope, an agency that provides supports to recipients who qualify for the Supports for Community Living Waiver.

For most of her life, Donna lived at home with her mother, Donna Kouns of Lawrence County (third from until she passed left wearing white jacket) works with her away. colleagues at the County Attorney’s office Donna now in Carter County. lives in a house with two other women (they have advocacy. Donna just completed an a swimming pool in the backyard!), Advocates in Action class with The Arc and Linda spends time with Donna of Kentucky and won the Gayla Peach regularly. award two years ago.

The two go shopping and eat out Donna also served on the together. They paint ceramics and Commonwealth Council on do glass mosaics, and Donna enjoys Developmental Disabilities Council sewing. where Linda was a member for nine Linda describes her friend as a years. “I’m happy for her that she has a woman with “a warm, loving heart who job now because Donna loves it,” Linda loves animals, children and music.” said.

“She is very observant and has a good “She thinks they are the best people ability to read people,” Linda said. in the world.” t The two also share a passion for

[David Duvall of Frankfort] for the next decade and half until both parents passed away within 16 months of each other. David then attended a sheltered workshop in Frankfort where he learned skills, and soon thereafter Susan and her son, Seth Stair, moved in with David.

With the help of a case worker at Bluegrass Comp Care, David made rapid progress, proved he could live on his own and got his first job in 2002.

He’s been living on his own ever since. David lives in his late parents’ 12

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home and rides the bus to work every day by himself.

“I get to work on my own, which is pretty remarkable,” he said. “I wash my own clothes and make my own meals.

I’ve been independent for a number of years and I love it.”

He also loves his job where he answers phones, attends to the copiers and helps with the mail.

“David loves to help people. He’s very thoughtful and caring,” Susan said of her brother. “He writes thank you

notes, is a helpful neighbor and he is very involved with his church.”

Work is a source of pride, pleasure and a paycheck for David.

“I like being able to get out in the community and make some money,” he said. “I like my co-workers and have a lot of friends at work.”

Susan can’t help but share the pride her brother feels about his life.

“It’s heartwarming to see him make the most out of his life,” she said. “He’s done so much with what he has. He’s a very good person and I’m proud to call him my brother.” t

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13

What

Disability?

CCDD Chairperson Chastity Ross Defines Herself By Her Abilities On a mission to track down the scrumptious cheddar biscuits at a Red Lobster restaurant, Chastity Ross of Richmond backed into a handicapped parking space when her companion and lifelong friend, Susan Waterbury, blurted out, “You can’t park here!”

Chas, as everyone calls her, just laughed and soon Waterbury joined her. One more example of people forgetting that Chas, who was born with no right arm, one leg shorter than the other and no femur bone in her left leg, has a disability.

By John Lynch

A

Another time while the two served as camp counselors together, the conversation went like this.

Chas: “There’s a spider in the shower.”

Susan: “Well, just kick it out!”

Chas: “With what leg?”

Laughter from both.

It’s the same on the job, where Chas serves as a case management supervisor for Intellectual and Developmental Disabilities Services at bluegrass.org.

“I’m not saying that we’re insensitive to it, but we just don’t see the disability,” said Della Tuttle, Corporate Director of IDD Services. “It has never and will never define who she is.”

Instead, Chas, the chairperson of the Commonwealth Council on Developmental Disabilities, is defined by her abilities and personal qualities 14

www.lexingtonfamily.com

– which are many.

She is witty with a contagious sense of humor. She is energetic, enthusiastic, a problem-solver and “amazing at conflict resolution,” Tuttle said.

She is a person of faith with a beautiful singing voice. She leads the children’s choir at church and sings the national anthem at high school games.

She is honest, straightforward, a natural born leader, an Eastern Kentucky University graduate and a single mom. Her children are Hunter, 11, and Julien, 7.

As she says, “My cup runneth over and I help people fill their cups.”

B

Born in 1977 and raised by her mother and grandmother in Richmond, Ross is a middle child with four half-siblings.

She attended the Model Laboratory

School on the campus of EKU because it was the only school that was fully accessible and featured small classes.

In the days before children with disabilities had aides, Chas had a room full of helpers – her classmates.

By far the smallest one in the class – she has grown to 4-foot-9 – classmates carried her up stairs, helped her with her books, even accompanied her to the bathroom (girls only) and buttoned up her clothes when she was done – an unheard of accommodation now but a matter of routine then.

“Model did a phenomenal job because I was part of the classroom like everyone else,” Chas said. “It was a blessing and helped me build independence.”

The same was true for her many lengthy stays at Shriners Hospital for Children in Lexington. Chas underwent 12 surgeries as a child

Chasity Ross

and lived at Shriners for weeks at a time. She attended school there and learned even more important lessons in physical therapy sessions – like how to fall.

Working on a padded floor, children would be bumped off balance and taught how to protect their heads in a fall and then to get themselves upright. In many ways, that was a metaphor for her childhood, Chas said.

Chas and the other children at Shriners were expected to play hard like other children so that meant lots of spills and skinned knees. In fact, she broke a bunch of her prosthetic legs.

“That meant that I was being a kid,” she said. “The people at Shriners expected greatness. Failure was not an option. There was no reason we couldn’t do anything that we wanted.

“Who I am today is built on the backs of nurses and doctors there.”

The rest of her childhood was marked by the typical milestones. She learned to type in high school, albeit one-

people come up to me and say they handed. want to pray for me… and they She got her driver’s license at 18 and mean right now in the canned goods attended college where she earned a section,” she said. “And they often say degree in special education. She also at the end of the prayer that in heaven minored in sign language, a skill she I’ll have both arms and legs and run mastered one-handed. like the wind.”

Chas has worked at bluegrass.org for 12 years, the past five in Lexington. As normal as she’s viewed by colleagues, “We’ve been friends since her children’s friends treat grade school and I just don’t her the same way.

“When young kids first think of her as having a disability. meet me, they ask the usual She’s just Chas,” Waterbury said. questions about my arm and leg,” Chas said. “After that, they move on and forget about Does she ever wish she had been it. Kids say, ‘She’s a mommy like my born with two arms and two legs? Not mommy.’” really.

As rich as her life is, it is not without “I don’t think I would have the frustrations. Too often, Chas is treated grace for other people and the heart like she has an intellectual disability, for service that I do now,” she says. and she sometimes grows weary of “It’s not by accident that I have the being an inspiration to well-meaning intellectual and communication skills people.

I do. I’m thankful for my life. I’ve been “I’ll be in the grocery store and blessed.” t

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15

The Etiquofette

Disability For Nearly 25 Years, Norb Ryan Has Provided the Right Do’s and Don’ts

By John Lynch

I

f you’re like many folks, when you encounter a person with a disability you worry about how to behave.

You don’t want to insult the person by doing something inappropriate but you don’t want to seem indifferent either.

You ask yourself: “Should I ask if I can help?

How do I address them? Should I speak more loudly?”

For nearly a quarter of a century, Norb Ryan, the former state Americans With Disabilities Act Coordinator, supplied answers for countless Kentuckians on Disability Etiquette.

And as much enlightenment as he provided, he generated an equal number of laughs.

“Norb has a wonderful, disarming sense of humor,” said Jennifer Hicks, Norb’s longtime No. 2 at the state ADA office and now his successor as Coordinator.

“I learned so much from him about 16

www.lexingtonfamily.com

how to handle awkward situations with humor.

“One summer, he and I drove around the state checking the accessibility of Kentucky parks. Spending a lot of time in the car with your boss could be bad for some people, but we laughed a lot and had a ball.”

As the ADA Coordinator since 2001, Norb made more than a thousand Disability Etiquette presentations to a wide range of groups including business groups, employers, police departments and others who interact

with Kentuckians with disabilities.

Norb is ideally suited for the job.

Born with cerebral palsy, he has always defied expectations and shattered stereotypes.

He played intramural football in high school, and softball and baseball most of his life.

“I was not a fast runner but I could hit so there was always a spot for me on the team,” he said.

A graduate of Eastern Kentucky University in 1975, he worked at Cardinal Hill Rehabilitation Hospital for six years and then was an administrator at Child Development Center of the Bluegrass for 16 years.

In 1992, he moved to the Human Development Institute at UK where he served as the disability program administrator, the Kentucky ADA Act Initiative director and employment specialist until he became the State ADA Coordinator in 2001.

At that post, he served as a de facto ombudsman for people with disabilities, fielding up to 500 calls a year.

Norb Ryan

He also became legendary for his Disability Etiquette powerpoint presentation.

It kicked off with interesting facts, including a list of celebrities with disabilities such as Franklin Delano Roosevelt (polio), Winston Churchill, Albert Einstein and Thomas Edison (learning disability), and Tom Cruise (dyslexia).

Norb pointed out that the latest statistics provided by the Census Bureau show that 57 million Americans have disabilities, including 4.6 million under 18 years old.

The presentation moves into the etiquette portion and is divided into categories, starting with language.

(For highlights of Norb’s etiquette do’s and dont’s, please see story this page.)

N

orb experiences most of the above situations all the time.

In the past 10 years, his cerebral palsy has become more of a challenge because of the aging process, requiring him first to use a cane then a “ranger” (his name for a walker, inspired by the TV show “Walker, Texas Ranger.”)

“If I’m backing into a door to enter and someone opens it to help me, I could fall,” Norb said.

“That’s why you should always ask first.”

If you’re still unsure how to proceed when dealing with those with disabilities, remember two things: treat them like everyone else and be prepared to rely on the power of humor.

Norb emphasizes the point with a story from one of his Disability Etiquette presentations to a group of police officers.

In the middle of the presentation, he momentarily lost his balance and realized that he couldn’t stop from falling backwards. Just before he tumbled over, he managed to tell the group, “I’ll be right back.”

Everyone howled with laughter. t

Disability Etiquette

It’s person-first language – Not with dyslexia.

a dyslexia child but a child

d with…” or “victim of…” and a Avoid loaded terms like “afflicte d of being confined to one. person uses a wheelchair instea s like “Let’s run out for lunch.”

Don’t avoid common expression h a speech impediment, feel When talking with someone wit elves or to rephrase the free to ask them to repeat thems statement. e who is hard of hearing or To get the attention of someon and look directly at them when deaf, tap them on the shoulder an interpreter. speaking, even if they are using your hand away from your Use short sentences and keep h profound hearing loss may mouth when speaking. Those wit facial expressions. not read lips but get clues from gedy – it represents Using a wheelchair is not a tra independence to the user. t the chair is an

ember tha Never lean on a wheelchair. Rem extension of that person’s space.

oduce yourself and state the With the visually impaired, intr , and announce when leaving or reason you are there, if needed entering a room. impaired by offering an arm or Guide a person who is visually shoulder.

Never pat or play with a guide working.

dog when the animal is

s often have People with learning disabilitie lligence. average or above average inte way they the er cov dis Work with them to learn best. with a Do not speak louder to a person m in a disability. Speak directly to the erwise normal tone of voice unless oth requested.

Before lending assistance, ask needed.

first if help is

2015 Exceptional Family KY

17

Coming Into His Own Lexington Teen Diagnosed With FASD Makes Major Strides

By Kimberly Kerr

O

n a beautiful spring day in 2001, we met a tiny little guy with bright blue eyes, fuzzy blond hair and a huge smile.

At 14 months old, Daniel was charismatic and vocal as he visited with his social worker.

We fell in love immediately and proceeded with plans for the adoption of Daniel and his older sister, Sarah, now 24.

After many visits with geneticists, pediatricians, speech language pathologists, occupational and physical therapists, Daniel walked at 18 months after scooting around the house for several months.

He began uttering understandable speech sounds around 15 months of age, with his first words being “boat” (we lived on a lake) and “eat.”

We were well aware that Daniel had delays in all developmental areas and remained hopeful that some TLC and therapy would help him catch up to his peers in a few years.

As the terrible twos hit, we noticed drastic differences in Daniel’s development and temperament as 18

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compared to our biological daughter when she was at the same age.

Daniel would hold his hands over his ears any time there was a loud or unusual noise.

He lashed out physically when he did not get his way, often hitting objects and people hard enough to hurt his own hands.

He cried more than a typical toddler.

His fine motor skills were extremely delayed. As the therapies continued, our worries increased.

Finally, after several evaluations and researching Daniel’s known history, at age 5 he was diagnosed with ARND (Alcohol Related Neurodevelopmental Disorder).

Any FASD (Fetal Alcohol Spectrum Disorder) means that there is a significant impact to the child’s central nervous system.

Since then he has also been diagnosed with ADHD, anxiety disorder and related behavior disorders – all quite common as secondary characteristics in any child with fetal alcohol effects.

My husband and I have studied all we can about FASDs, and we attend conferences in order to keep up with current research.

In October 2014, we attended the FASD Action Summit in Moline, Illinois. At this conference we brainstormed with other parents from around the country, as well as learned from some of the leading researchers and doctors in the field.

When I was approached by The Arc of Kentucky to help with its FASD Prevention Project by distributing FASD prevention kits to doctors, I

Daniel Kerr jumped at the chance to help stop one of the most preventable form of birth defects.

Visiting the local doctors, nurses and staff has been truly rewarding. Most of the offices have been so grateful to receive the information in such an efficient and user friendly form.

O

ver the years, we have shed many tears. One of the worst days came when school testing confirmed that Daniel had significant delays in working memory and processing speed.

We knew instantly that learning new concepts would be challenging for him.

School continues to be difficult for Daniel.

He tried taking band class in sixth grade but couldn’t keep up with his supplies and received very limited support from school.

He also wanted to be on the swim team but didn’t make the cut.

We could (and sometimes do) grieve over the activities that Daniel cannot do, but we try to focus on what he can do and what he enjoys doing.

Daniel loves sharks and whales. He enjoys learning facts about them and quizzing others about his “shark knowledge.”

As a family, we have traveled to the Miami Sea Aquarium, the Tampa Bay Aquarium, the Georgia Aquarium, Clearwater Marine Center, and of course many trips to the Newport Aquarium.

Daniel says that he will work at an aquarium in the future and I don’t doubt it.

He especially enjoys visiting with the staff at the aquariums.

Of course, we see every movie related to sea life.

Daniel has never met a stranger. He thrives in an environment in which he can ask lots of questions.

He visits with cashiers at Kroger, bank tellers, hostesses and waiters. This is a quality that we encourage as it is a mechanism for him to learn in a stress-free environment.

Daniel began visiting with the staff at Saul Good, a Lexington restaurant, and soon made friends. The cooks always ask him about his life.

FASD Prevention Project Arc of Ky Program Helps Health-Care Providers Spread the Message:

C

No Alcohol During Pregnancy

onsuming alcohol – any alcohol – during pregnancy can harm a developing fetus and cause FASD. FASD includes a range of lifelong effects on a child and family.

According to data provided by The Arc of U.S. by the Centers for Disease Control and Prevention, 1 in 13 pregnant women reported drinking in the past 30 days.

Nationally, 1 in 6 adults talk with their health-care professionals about drinking, and research indicates that many doctors continue to advise women that light to moderate consumption of alcohol, especially later in pregnancy, is safe.

Through a grant received from The Arc of the U.S., The Arc of Kentucky has launched a prevention campaign to increase health-care provider knowledge of the risks alcohol can pose to a fetus and encourage the use of Fetal Alcohol Spectrum Disorder prevention strategies.

The Arc’s FASD Prevention Project is a cooperative agreement funded by the U.S. Department of Health and Human Services Health Resources and Services Administration.

The Arc of Kentucky is a statewide grassroots volunteer organization that advocates for the rights and full inclusion of people with intellectual and developmental disabilities.

Through this grant, FASD toolkits are currently being distributed to local obstetricians, family practitioners,

physician assistants, nurse practitioners and local health department physicians in the pilot area of Central Kentucky.

The first three counties targeted are Fayette, Franklin and Madison.

Through this grassroots initiative, The Arc of Kentucky is collaborating with the Bluegrass FASD Prevention project to assist with volunteers (some of whom have children with FASD), who are meeting personally with health-care providers to bring them the message – “Alcohol & Pregnancy: it’s just not worth the risk.”

The Arc of the U.S. along with The Arc of Kentucky is committed to the prevention of FASD. This issue is of paramount importance to The Arc because FASD is the single most common cause of intellectual and developmental disabilities that is 100% preventable.

The health-care setting provides multiple opportunities to inform women about FASD. Providing materials such as brochures, posters, etc., in waiting rooms and clinics can heighten awareness and create opportunities for women to ask about FASD. The Arc of Kentucky will continue its FASD prevention effort through a second-year grant from The Arc of the U.S. that will be used to target physicians in the Somerset, Glasgow, Bowling Green and Owensboro areas with assistance from volunteers from local Arc chapters. t 2015 Exceptional Family KY

19

Daniel Kerr The manager takes such an interest in him that he invited Daniel to come and “help” one day.

Daniel made his own meal and learned the basics of the kitchen.

Now, he says he must work at this restaurant when he is not working at an aquarium.

We are so grateful to all the kind people that we meet in the community.

Most have no idea that Daniel also deals with major depression and anxiety stemming from his fetal alcohol exposure.

Daniel is often so overwhelmed in crowds or large buildings that he is physically sick or unable to continue with the event.

Other times, he gets so frustrated that he may lash out verbally or physically.

With the help of Community Living Support workers provided by the Michelle P. Waiver and with extensive family support, Daniel is making progress in these areas.

Daniel Kerr, far right, with his family Kimberly, Nathan, Sarah and Lauren He is also beginning to learn about his diagnosis and advocate on his own behalf, with the help of a therapist.

I recently heard Daniel telling a pregnant cashier at a grocery store to be sure not to drink while she was pregnant so that her baby “wouldn’t

Human Development Institute “Changing Practice, Changing Lives” HDI provides a broad set of projects and programs across the life span to improve services for individuals with disabilities and their families. 

Free statewide child care referrals (includes Spanish) (877) 316-3552

 Programs for school districts to improve transition services and post-

school outcomes for youth and young adults with disabilities 

Training for adult service agencies in supported employment, health and wellness, and full community participation

 Post-secondary and college opportunities for students with intellectual

disabilities  Our Graduate Certificate in Developmental Disabilities, offered both on-campus and on-line 

Our Fall and Spring Statewide Seminar Series

For more information on our programs, visit us online

www.hdi.uky.edu

UNIVERSITY OF KENTUCKY Human Development Institute University Center for Excellence in Developmental Disabilities

20

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have fears.”

Kimberly Kerr is a graduate of the University of Kentucky and taught Special Education in Mercer and Fayette County public schools. She currently lives in Lexington with her husband and son. t

The Autism Society of the Bluegrass serves as resource and support for families in Central KY who care about someone with autism.

es Conferenc nal & Educatio s Lecture

Monthly Meetings Monday of Held the last each month ichael’s 6:30 at St. M urch Episcopal Ch te Dr. n 2025 Bellefo Lexington

Reso ur Lend ce ing Libra ry

Annual “Bluegrass Autism Walk”

Low Interest Loans for Assistive Technology Do you or someone you know have a disability?

To apply call toll free (877) 675-0195 or online:

Are you in need of a van lift, computer, communication device, wheelchair ramp, hearing aides or other assistive technology ?

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Join the Fun and Excitement of Organized Soccer Open to athletes with special needs ages 4 and older Fall and Spring Seasons Athlete Buddies Available Uniform shirts provided

Cost $25 per season To register go to www.lysa.org Questions: 859-223-5632 or info@lysa.org

WWW.LYSA.ORG/TOPS/ 2015 Exceptional Family KY

21

Gone But Not

Forgotten

Cemetery Project Honors Those Who Lived and Died at Frankfort State Hospital and School

V

By Jeff Edwards

iola Goodin, Isadore Eddy, Pierce Gabbard and Mary Goodman are not names that have been recorded in Kentucky history. Their final resting place – the Frankfort State Hospital and School Cemetery – was ignored, unkempt and forgotten.

The cemetery contains the remains of more than 411 people, and the majority of the headstones are labeled “unknown.” Then in May of 2012 everything changed.

The Protection and Advocacy for Individuals with Developmental Disabilities (PADD) Advisory Board for the Kentucky Protection & Advocacy Division decided that it was time to pay long overdue respect to the forgotten.

The cemetery project was born.

A host of volunteers weeded, trimmed thatch, cleaned trash, mowed and placed a flag on each grave.

The volunteers included members of the PADD board, Kentucky Self-Advocates for Freedom, Commonwealth Council on Developmental Disabilities, The Human Development Institute, and The Arc of Kentucky.

In addition, the cemetery would be honored yearly, on the Thursday before Memorial Day. In 2015, the cemetery cleanup will be May 21.

The PADD Advisory Board was happy with the results and the attention given to their brothers and sisters with disabilities. But one day, once a year was not enough.

The PADD board wanted this piece of Kentucky’s history remembered.

22

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For far too long those buried in the Frankfort State Hospital and School cemetery had been ignored in death, as they had been in life.

The cemetery is located on Glenns Creek Road, directly across from the Frankfort Cemetery, the resting place of Daniel Boone, 17 Kentucky governors, statesmen and women, artists and other notable Kentuckians.

The lack of attention paid to those who lived and died at the Frankfort State Hospital and School is a reminder that Winston Churchill was correct, “History is written by the victors.”

Now, Kentuckians with disabilities are writing their own histories, telling their stories and demanding that their defeats and victories are recognized and respected.

A campaign was launched to raise funds for a historical marker. Members of the board created greeting cards, and held yard and bake sales to raise the required $2,600.

On May 22, 2014, as more than 50 volunteers participated in the annual cleanup they also celebrated the dedication of a historical marker honoring those Kentuckians with disabilities from the Frankfort State Hospital and School.

Speakers included Teddy David, Mark Newton and Marie Braun – all former residents of Frankfort State Hospital and School who now live independently in the communities of their choice.

They remember feeling frightened, abused, angry, ignored and unheard.

Now they work, volunteer, advocate, educate and rabble rouse.

They challenge us all to work to ensure that the lives of Viola Goodin,

The Marker Reads: In 1860, Gov. Magoffin signed a bill establishing the Kentucky Institution for the Education and Training of FeebleMinded Children. In the 1940s, the name changed to the Kentucky Training Home.

Adults were admitted and housed with the children due to overcrowding. Capacity was 616, but rose to 1129 residents.

By 1963, the name changed to Frankfort State Hospital and School. It closed in 1972. Many residents spent their entire lives here working as unpaid staff by maintaining the institution. More than 411 people are buried in the cemetery, with most graves marked as “unknown.”

Isadore Eddy, Pierce Gabbard and Mary Goodman are not forgotten, as well as those who lay under headstones that read “unknown Frankfort State Hospital and School Cemetery.”

Jeff Edwards has been with Kentucky Protection & Advocacy since 1996 and has been its director since 2014. Prior to working at P&A Jeff provided direct care, case management and vocational services to children and adults with disabilities. t

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23

Am I My Brother’s Keeper?

Yes!

Sibling Leadership Network Promotes Relationships SLN Conference Comes To Louisville in May

T

Clayton Carroll with his older brother JB, who has embraced his role as Clayton’s advocate and supporter.

Siblings

Clayton & JB Carroll

By Stella Beard

“W

illiams syndrome.” It was a Tuesday… February 4, 1997 when I heard those two words for the first time and my life was changed.

Some would say it was a change that would devastate me.

At least for a while, it did. Now, I know it definitely was a day of change for my family.

Clayton was born on May 11, 1996, 24

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he mission of the Sibling Leadership Network is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and promote issues important to them and their entire families.

Membership is free and you can join by visiting www. siblingleadership.org.

In 2015, the national Sibling Leadership Network conference will be at the Galt House in Louisville on May 30 and 31. This is an opportunity to build relationships within the SLN, to become a part of growing a Kentucky Chapter and to learn from each other.

Kentucky has applied to become a chapter. People with a Facebook page can ask to join the Kentucky Sibling Leadership Network’s Facebook page that has been developed by The Arc of Kentucky.

During 2014, the national sibling network grew to more than 4,000 siblings and supporters with 17 state chapters.

The network led webinars and created an Advocacy Toolkit for siblings that includes Sibling Policy Videos and the 2014 Sibling Policy Brief, which highlights legislation significant to siblings.

It also became an official 501(c)3 nonprofit organization.

The SLN includes actual siblings and sibling surrogates.

The following two articles tell the story of a sibling advocate and a sibling surrogate as advocate.

three weeks early and weighing 5 pounds.

Following his birth, I knew something was going on with Clayton, but I just couldn’t get anyone else to listen.

He cried all the time, never slept, vomited every time I fed him and he was not reaching any milestones his older brother, JB, had.

Finally, one night when he was 9 months old, I made an appointment with my pediatrician who immediately admitted Clayton to UK Children’s

Hospital.

We hadn’t realized that Clayton had pneumonia in both lungs.

Following a seven-day stay and after his lungs were clear, we were referred to a cardiologist because our pediatrician heard a heart murmur.

While at the appointment, the cardiologist asked me many questions about Clayton and then announced, “Your son has Williams syndrome.”

Williams syndrome is a genetic

ate Sibling surrog

Vicky Gossick & Jacqueline Kearns

By Jacqueline Kearns

I

became Vicky Gossick’s legal guardian when her mother, Jean Gossick, passed away in 1998, so I have been Vicky’s guardian for 16 years and have known her for more than two decades.

I met Jean in 1990 while on a trip to Chicago for a conference by TASH, an international organization for people with severe disabilities. The long car ride to Chicago provided the opportunity for Jean to share Vicky’s story.

Vicky, who is now 59, has autism with intellectual disabilities and challenging behavior.

At the time of that trip, I was a special education teacher of students with moderate and severe disabilities at Jessamine County High. The following year, in 1991, I began working at the Human Development Institute.

I was a member of the team convened

by Jean about 1991 for the purpose of moving Vicky from the Oakwood state institution in Somerset to a residence with staff in Lexington.

Other members of the team included Carolyn Wheeler and Harold Kleinert, my colleagues, along with Jean, from the Human Development Institute at the University of Kentucky.

Also on the team was Barb Kibler, who worked for Protection and Advocacy at that time.

We worked closely with staff from what is now blugrass.org to obtain the necessary public funding to make this transition a reality.

Vicky’s team, facilitated by Carolyn, used Personal Futures Planning as a tool to develop strategies for moving Vicky from Oakwood to the Lexington community.

Vicky was too old to benefit from the Individuals with Disabilities Education

Act (IDEA) and was institutionalized at Oakwood when education programs refused to serve her.

As the person on the team closest in age to Vicky and single at the time, I spent some time getting to know her.

We ate at restaurants, Jacqueline Kearns, who worked with Vicky Gossick’s mother, shared popcorn has been Vicky’s legal guardian since 1998. on the patio of her mother’s garden alternative augmentative and participated in other community communication (AAC) systems, as Vicky activities. does not use oral speech competently.

In addition, I met Vicky’s three We are hopeful that such systems sisters, Liz, Mary and Kathy, all of will help replace behaviors that are whom live in other states. challenging.

The groundwork for assuming My sons, John, 12, and Wesley, 9, guardianship was laid in those years. know Vicky and actively participate Upon Jean’s death, at the request of when visiting. her sisters, I assumed guardianship for She comes on Christmas night to Vicky. share gift opening. She surprised us at Over the years, Christmas by reciting verbatim “The my primary Night Before Christmas.” responsibilities as We celebrate her birthday with Vicky’s guardian cake and ice cream. In the spring, have included we’ve planted flower boxes and attending support tomato plants. In the fall, we painted team meetings, pumpkins. visiting her at Vicky reminds me that “ordinary” home every 4-6 things are really important. weeks, filing guardianship papers and On a professional level, our communicating with Vicky’s sisters. relationship reminds me of the work we must continue to do on behalf of adults urrently, in concert with who have disabilities.

Vicky’s Case Manager from While I can see room for bluegrass.org, we are looking for improvement in Vicky’s life in interesting and creative ways for Vicky terms of the number and quality of to have more opportunities during the opportunities she has to meaningfully day among the new options that are participate in the community, I can available under the amended Supports say, after 20 years, that Vicky is safe, for Community Living Home and still lives in the same house, has a Community Based Waiver funded by daily routine that provides her with Medicaid. activities outside her home, and caring I am also working with residential residential and day support providers. t and day program staff to implement

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2015 Exceptional Family KY

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Siblings

Clayton & JB Carroll

condition and can affect anyone. It is characterized by cardiovascular disease, developmental delays and learning disabilities.

These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It occurs equally in males and females and in every culture.

I

t has been 18 years since we received the diagnosis, and my family has been through many ups and downs.

In 2011, Clayton and JB lost their father to a car accident, a loss that devastated the boys.

(Clayton and his Direct Support Professional Zack Damron, who worked with Clayton at the time as a part of the Michelle P. Waiver, wrote a song called “Dear Dad” to help Clayton get through the grief of losing his dad.

(You can listen to the song here: http://www.youtube.com/ watch?v=mmPvEAuUw_E) Six months before the death of their father, we decided to start a Special Needs Trust to plan for Clayton’s future after his father and I were no longer around.

Their father’s fatal accident made us realize the importance of future planning, and how it also involves family members and other folks in Clayton’s life.

JB, 21, has agreed to be involved in Clayton’s life in some regard and to ensure he continues to have a good life from now on.

“I have known the responsibilities that come with being Clayton’s brother ever since I was very young, but they have never scared me,” JB said.

“Clayton has been such a blessing and has taught me so much that the idea of him always being with me feels completely natural.

“I look forward to the days where I 26

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wake up in the morning and have breakfast with him and talk about the day ahead.

“Though I know there will be hard days, having him around will always make the day better and push me to strive for more.

“I carry my responsibilities with happiness and pride. I couldn’t even imagine my life any other way.”

Above, Stella layton is 18 Beard and and a senior at her blended Casey County family: Cole, High. This year he was Taylor, Ryan, Stella, crowned runner-up Clayton and for Homecoming King JB. and the winner, Kyle Right, Eades, gave his crown to Clayton with Clayton. homecoming Clayton also was voted king Kyle “Most Unforgettable” by Eads, who his peers and is involved gave his in band, choir and has crown to Clayton. been the girls’ volleyball team manager for the past two years.

Clayton lives at home with his family in Dunnville.

He also works two days a week at Bread of Life Café in Liberty.

I have since remarried an amazing man named Ryan who is the Dean of Students at Casey County High.

Clayton now calls him “Dad.” We do have a unique “blended” family that works for us. Taylor (13) and Cole (12) see the importance of being siblings who advocate for their big brother.

They have both become educated about Williams syndrome. Because Clayton has high blood pressure, Taylor

C

has even learned how to monitor it for me.

Brothers and sisters will always have their differences. Living with a brother or sister, including one with a disability, can be rewarding and confusing all at the same time.

I think our unique blended family is amazing and I would not trade one thing about it.

Clayton has taught us all to love unconditionally and accept others just as they are.

The love and joy that Clayton shows to his family and others have made us all want to become better in all areas of our life. For that I am grateful. t

Stella Beard works for Casey County Board of Education as the Special Education Program Assistant. She is also the Family Enrichment Coordinator for The Arc of Kentucky and travels around the state training parents and professionals on Medicaid Waivers and how to use them effectively.

Writing

Individualized Education Plans If you suspect your child has a disability and needs special education services, you can make a referral to your school to have your child evaluated for special education, including a possible Individualized Education Plan (IEP).

If your child qualifies for an IEP, you will receive progress notes on how your child is doing on his IEP goals as often as the school gives out report cards to all children. If there is a problem, the team can meet at any time during the year. Although there are many pages to an IEP, these are the four main parts: 1. Levels of Performance: Present levels should address all areas of need (communication, phys­ical, academic, social/emotional). They should tell specifically what the child is having problems with and what things work for him. Examples: Poorly written: “Dan is writing below grade level.” Better: “Dan can write a simple sentence with correct capitalization but struggles with questions and exclamations.”

By knowing what Dan can and cannot do, you have a starting place to write goals.

2. Annual Measurable Goals and Benchmarks: These provide a road map of what the child is working on and should be making progress on during the coming year. These can be academic, social and behavioral. Goals should be specific and measurable. Examples: Poorly written (too broad and general): “Alexis will improve her writing skills.” Better: “Alexis will write a five-sentence paragraph with correct punctuation and capitalization during 3 out of 5 attempts with 85% accuracy.”

TIPS

n If your child has a current IEP, make sure you have a copy. Ask the school if you don’t have one. n Review the information in each section so you are familiar with what your child is working on now.

3. Supplementary Aids and Services: These are all the things the school

provides to the child so he can: 1) Make progress on his annual goals; 2) Progress in the general curriculum; 3) Participate in non-academic and extra-curricular activities; 4) Be educated with and participate with children without disabilities.

Supports and services should be based on what the student needs, not on what is available. Examples: Preferential seating, readers and scribes, modified assignments, extra time, etc.

n Think about what needs to be in the next IEP.

4. Least Restrictive Environment (Placement): This is the place, classroom(s) and other school environments where the child can best work on her goals.

To the maximum extent possible, a student with disabilities should be educated in general education classrooms with supports and services. Removal should happen only after all supports and services have been tried, and the student cannot achieve her goals in that environment.

There is a continuum of places from the least restrictive (general education classroom) to more restrictive environments, including special classes, home instruction and hospitals. t

For more information, call the Kentucky Protection & Advocacy office at 1-800-372-2988 or visit web pages at www.kypa.net.

INFO

2015 Exceptional Family KY

27

In Lawrence County

Everybody Knows

His Name

They Call 52-Year-Old Doug Vanhoose, 'Bulldog’

By Tina Jackson

A

nyone who has attended a Lawrence County High football game has seen or heard the team’s biggest cheerleader and supporter, Doug Vanhoose.

Doug is a Lawrence County icon. He is known statewide as “Bulldog” in honor of the team’s nickname.

Doug was born with learning difficulties and doctors predicted a short life span, but it did not keep him from becoming a beloved, hardworking member of our community at age 52.

Twenty-seven years ago, Bulldog started attending high school football games and cheered the team from the sidelines.

He became such a constant fixture at games that the coach started giving him jobs to do to help the team.

He carried equipment, kept the players supplied with water and other tasks.

Year after year he has befriended the members of the varsity football team and, just by his presence, has taught countless young people to accept people who were a bit different.

When you ask him what he thinks he has taught the teams he will say he taught them respect.

The coaches over the years have

28

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kept Bulldog involved with the football team and have nothing but admiration for him.

The Community of Sharing decided to honor him as a valued teacher and friend to the youth with a pizza party with all the coaches present to tell stories about their time with Bulldog.

He was presented with a framed certificate to thank him for his years as a leader and treasured member of the community.

One of the coaches told a story about being at an away game and trying to get in the gate to the locker room.

He had forgotten his coach’s pass.

The coach tried to talk his way in with no success. Then, Bulldog came around the corner to join the coach.

The guard saw Bulldog and said,

Doug Vanhoose Bulldog is a fixture at high school football games. Above, he displays his Appreciation Award with Tina Jackson “Oh, are you guys with Bulldog? If so, go on in.”

Bulldog is still talking about the pizza party. The coaches are planning another recognition dinner on a bigger scale at the school to include the football players and students.

One of his longtime friends, a sportswriter, suggested they make Bulldog t-shirts to sell.

When asked what he would do with the proceeds, Bulldog and the sportswriter said they would use the funds to bring people from a local nursing home to home football games.

We are lucky to have Bulldog to help us celebrate the youth of our community.

We all hope that he is still giving us his gifts for another fifty-two years. t

Community of Sharing: Spirit of Inclusion

T

ry to imagine that the place where you live is a place where everyone is valued and respected.

Envision a woman with cerebral palsy taking a self-defense course, a man teaching guitar who has a vision impairment, a community of people with and without disabilities teaching and learning from others – this is the Community of Sharing.

Imagine that your community welcomes all people regardless of their differences because, not only is it right but because with every unique person there is a new gift or talent that can be added to the community.

In 2013, the Commonwealth Council on Developmental Disabilities realized a new way to continue its efforts to improve Kentucky communities by creating more opportunities of inclusion of all citizens whether they are disabled or not.

This effort is the first of its kind in

Kentucky and is inspired by an initiative in Georgia based on the principles of Asset Based Community Development.

Now, Community of Sharing efforts in Kentucky are supported primarily by the Kentucky Self-Advocates for Freedom, which is an advocacy organization operated by and for people with disabilities.

Two Eastern Kentucky communities were the first to embrace the Community of Sharing model: Lawrence County (Louisa) and Westwood (a suburb of Ashland). Each community is working to be more inclusive and to encourage citizens to become more actively involved in their community.

County builders discovered interests in canning, quilting, how to make the most of using coupons and music.

Along with a quilting guild, canning

and couponing classes, Lawrence County community builders will institute a music camp this summer.

In Louisa, a sign language class has been started, and Westwood has launched a classic car club based on the interests of the community.

In addition, the Westwood team formed a book club at the local grade school and is encouraging students to write stories about life in Westwood.

These stories could become part of a book that will coincide with the town’s 100th anniversary.

All of these activities include people with disabilities and people without disabilities.

With these initiatives underway, the Community of Sharing is replicating the experience in Taylor, Green, Adair, and Russell counties in 2015. t

To establish a Community of Sharing in your area, e-mail for more information at adrienne@grizzell.org or find the organization on Facebook at Kentucky Community of Sharing

Louisville Will Host 2015 AAIDD National Conference

T

he American Association on Intellectual and Developmental Disabilities, an association for professionals who work to enhance the lives of individuals with intellectual and/or developmental disabilities of all ages, is holding its 139th annual meeting in Louisville at the Galt House, June 1-4.

AAIDD has promoted progressive policies, sound research, effective practices and universal human rights for people with IDD. The organization has long been recognized as a source of information and education on effective research, practice and policy within the field of IDD through AAIDD journals, books and assessments including the Supports Intensity Scale for Adults to assess strengths versus deficits.

The 139th annual meeting will begin on June 1 with a series of pre-conference sessions, followed on June 2 with plenary meetings, smaller concurrent sessions, and a large group poster session on a variety of topics related to IDD. Following a reception on the Louisville Belle on Monday evening, the first plenary meeting on June 2 will feature Robin Jones, Director of the ADA Center at University of Illinois, Chicago speaking on the impact of the ADD on the 25th anniversary of this land-mark legislation.

Also featured will be Steve Warren, University of Kansas, who will share research that describes a longitudinal study of families and Fragile X. The meeting will focus on what

professionals, family members and self-advocates have been doing and plan to do in the future to “Make a Difference in Research, Practice, and Policy,” the conference theme.

The conference registration process is available beginning March 1, 2015.

The AAIDD has a diverse membership of medical, educational, legal, direct support professional and other disciplines that join together annually to share information, gain new perspectives and plan future directions within the field of IDD. AAIDD welcomes all to the Louisville conference in 2015 and hopes that Kentucky and surrounding states will be well-represented by local and regional attendees.

Info: http://aaidd.org/ Y 2015 Exceptional Family KY

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Second Sunday Playgroup Potluck

&

Lexington Families Band Together for Social Time – For Children and Parents

A

ll I ever dreamed of was being the mom

of a house full of children. After having our first daughter with the help of fertility medication, my husband, Brandon, and I decided to adopt through foster care.

Since I had spent most of my life working with individuals with special needs, it seemed a natural step to adopt children with special needs.

We adopted a sibling set first and then our fourth child shortly thereafter.

In a whirlwind of babies and new demands, I settled into a new type of normal.

I had been in special education for 10 years when my husband and I decided to adopt children with special needs.

I had a good idea about the doctor appointments, school struggles and sleepless nights for which I was signing on.

However, I didn’t know in the beginning that I would be quitting work. I didn’t realize how difficult traveling and socializing with my kids 30

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would be.

I didn’t know just how small my world could become.

It wasn’t that we were no longer welcome with friends, it was just so difficult.

I worried that the kids would act up, run off, just not fit in.

I wondered if I even knew how to converse with mothers whose lives didn’t revolve around therapy and unknown diagnoses.

In an effort to widen our circle, I signed up my children for the Toyota Bluegrass Miracle League Baseball program.

Once a week, for a few months a year, we had a place to celebrate our special kids and to chat with other parents of kids with special needs.

It didn’t matter if the kids ran in the wrong direction or danced at

By Nicole DeZarn

The key to a successful playgroup?

Keep things and expectations simple, be flexible and, above all, relax.

home plate, we were just happy to be together among other families who “got it.”

Then, some of the parents from our Miracle League team got the idea to start getting together once a month in addition to baseball.

A couple of families agreed to host the playgroup on a rotating basis.

We picked the second Sunday of the month as our meeting date, and thus, the Second Sunday Playgroup and Potluck was born.

It’s pretty simple. We have

a Facebook page on which we plan themes, who will bring what, etc. and we get together for an afternoon of shared food, play and friendship.

The rules are simple – you bring something if you can and it’s fine if it’s store bought.

Time is pretty flexible so no one should stress about being late.

You stay home if you are sick

(because several of our members are very fragile) and everyone is accepted.

It’s one place we can all go where no one gets upset if your child has a spill or a meltdown.

If they mess up a social cue or have a toileting accident, it’s okay; we’ve all been there.

Over time, we’ve added new members. Anytime one of us meets a family who seems like they’d like to make a connection, they can invite that family to our group.

We’ve also become a tight-knit group that shares not only playdates and birthday parties, but support through difficult diagnoses and illnesses.

We’ve also enjoyed more than our share of laughter, joy, messes and water balloons.

Our playgroup has become a support network and a gift to all of us.

If you are considering forming one of your own, here are some of the things that I believe makes ours work so well.

First, we are serious about not being so serious.

It’s not that we don’t occasionally share a good cry, but it’s not all about that. It’s mostly about laughter and chocolate.

We have all kinds of kids.

Original members The differences in disabilities of the Playgroup and typical siblings provide are Nicole DeZarn, opportunities for us to share Dixie Miller, Brandy experiences.

Eckman & MaryLee Lots of moms of busy kids Underwood think snuggling a kiddo in a Exceptional wheelchair is a beautiful break and, likewise, a game of catch anything outside of the vital seems with a busy boy or girl can be an impossible. That doesn’t mean they will awfully fun break for a dad that doesn’t never want to come. Let that be okay. get to do that much.

Family Ky Family Ky

Most of all, relax.

Don’t take it personally if Exceptional This should be the one place where people miss, keep inviting them. you don’t have to worry about fitting in

The truth is, every exceptional family goes through phases where doing

or being perfect.

It should be your place to breathe. t

Family Ky Exceptional

Exceptional

2015

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Commonwealth Council on Developmental Disabilities

Independence Integration Inclusion Chastity Ross of Richmond with her children Julien, 7, and Hunter, 11

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ReSouR ce LiStingS A Speciality Publication of

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To make sure your organization gets plenty of FREE copies of Exceptional Family call or visit

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CCDD Chairperson Chastity Ross of Richmond with her children Hunter, 11, and Julien, 7

Family Ky Family Ky Exceptional

• Exceptional general •

Commonwealth Council on Developmental Disabilities

32 Fountain Place Frankfort, Ky., 40601 (877) 367-5332, (502) 564-7841 www.kyccdd.com The mission of the CCDD is to create systemic Exceptional change in Kentucky that empowers individuals to achieve full citizenship and inclusion in the community through education, capacity building and advocacy.

CCDD is a dynamic mix of people with unique backgrounds and experiences. Members include 16 governor-appointed individuals with disabilities and family members of individuals with disabilities, as well as representatives from major state agencies that serve people with developmental disabilities.

Resource List 2015

attorneys who focus their practice in benefits planning and caring for those with special needs family members.

Attorney Karen L. Perch 2333 Alexandria Drive, Lexington, Ky., 40504 (859) 224-0513 / www.perchlaw.com Karen Perch and her staff are dedicated to helping clients with their legal matters regarding Wills, Living Wills, Powers of Attorney, Trusts, including Special Needs Trusts, Qualifying Income Trusts (Miller Trusts) and Family Trusts and Estate Administration

Family Ky

ALMOSTfamily/CAREtenders Kentucky Home Health Offices Multiple locations www.patientcare.com/locationdetail.php?u=Kentucky

Arc of the United States Attorney Robert McClelland McClelland & Associates, PLLC 1795 Alysheba Way, Unit 2102 Lexington, Ky., 40509 / (859) 543-0061 www.Lexingtonelderlaw.com Robert L. McClelland is an elder law attorney and guardian in the Lexington firm of McClelland & Associates, PLLC. He is a member of the Special Needs Alliance, a national alliance of special needs 32

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The national organization of and for people with intellectual disabilities and related developmental disabilities and their families.

(800) 433-5255 / (301) 565-3842 info@thearc.org www.thearc.org

The Arc of Kentucky 706 East Main Street, Suite A

Frankfort, Ky., 40601 (502) 875-5225 / (800) 281-1272 arcofky@aol.com / http://arcofky.org The Arc of Kentucky believes that individuals with intellectual and developmental disabilities are contributing members of schools, work places, churches, synagogues, neighborhoods and their communities. The Arc values services and supports that enhance the quality of life through interdependence, friendship, choice, and respect for individuals with intellectual and developmental disabilities. The Arc’s website includes resources, projects, events, etc. pertinent to individuals with intellectual and developmental disabilities and their families.

The Arc of Kentucky Local Chapters PLANS - The Arc of Christian Co. 127 Remmington Road Hopkinsville, Ky., 42240 (270) 889-8300 The Arc of Owensboro P.O. Box 1833 Owensboro, Ky., 42301 (270) 685-2976 The Arc of Barren Co. 630 Green Tree Road Edmonton, Ky., 42129 (270) 432-5938 The Arc of Warren Co.

Resource List 2015 4250 Old Glasgow Road Scottsville, Ky., 42164 (270) 816-7213 The Arc of Logan Co. 443 Hopkinsville Road Russellville, Ky., 42276 (270) 726-2218 The Arc of Breckinridge Co. P.O. Box 37 Harned, Ky., 40144 The Arc of Hardin Co. P.O. Box 2013 Elizabethtown, Ky., 42702 (270) 737-1140 Louisville Metro Arc 2510 Meadowlark Dr. Prospect, Ky., 40059 (502) 228-8660 The Point Arc 104 W. Pike St. Covington, Ky., 41011 (859) 491-9191 The Arc of Lake Cumberland 130 Southern School Road Somerset, Ky., 42501 (606) 679-4782 The Arc of Madison Co. P.O. Box 1863 Richmond, Ky., 40476 (502) 875-5225 The Arc of Central Kentucky 1753 Appomattox Road Lexington, Ky., 40504 (859) 351-0728 The Arc of Southeastern Kentucky (pending) P.O. Box 183 Wayland, Ky., 41666 (606) 329-8588

Best Buddies Kentucky 1151 South Fourth Street, Louisville, Ky., 40203 (502) 736-0838 www.bestbuddieskentucky.org Best Buddies Kentucky, founded in 2009, is dedicated to establishing a global volunteer movement that creates opportunities for people with intellectual and developmental disabilities such as Down syndrome, autism and traumatic brain injuries.

Big Brothers Big Sisters of Kentuckiana 1519 Gardiner Lane, Suite B Louisville, Ky., 40218 (877) 588-2300, (502) 587-0494 www.bbbsky.org The mission of BBBS is to help all children reach their full potential through professionally supported one-to-one mentoring relationships.

Bluegrass Technology Center

Independence Place, Inc.

817 Winchester Road, Lexington, Ky., 40505 (859) 294-4343; (800) 209-7767 www.bluegrass-tech.org BTC is a non-profit, grassroots organization that assists individuals who have disabilities, their families and service providers in connecting with various technologies and services that provide the gateway to greater independence, productivity and quality of life. BTC is a member of the Alliance for Technology Access, The Eastern Regional Center for the Kentucky Assistive Technology Service (KATS) Network.

Lexington Location 1093 South Broadway, Suite 1218 Lexington, Ky. 40504 (859) 266-2807; (877) 266-2807; TTY: (800) 648-6056 / www.independenceplaceky.org Executive Director: Pamela Roark-Glisson Independence Place is a non-profit, consumer driven, non-residential Center for Independent Living, serving people with disabilities of all ages. The mission is to assist people with disabilities to achieve their potential for community inclusion through improving access and equal opportunity.

Ashland Location Branch Director Sandi Ranford (606) 585-5846 / www.independenceplaceky.org Cumberlands Location Patricia Turner / (606) 765 0547 www.independenceplaceky.org

Kentucky Centers for Independent Living Consortium: Disability Resource Initiative Marilyn Mitchell 624 Eastwood Street, Bowling Green, Ky., 42103 (270) 796-5992, Toll free: (877) 437-5045 initiative@dri-ky.org www.resources4independence.org

Center for Accessible Living Louisville Location Jan Day 501 S. 2nd Street, Suite 200, Louisville, Ky.,40202 Voice: (502) 589-6620; TTY: (502) 589-6690 (888) 813-8497 / www.calky.org Murray Location Jeanne Gallimore 1051 N. 16th Street, Suite C Murray, Ky., 42071 / Voice: (270) 753-7676 TDD: (270) 767-0549;Toll Free: (888) 261-6194 calmur@calky.org / www.calky.org Northern Kentucky Location Rene Thompson P.O. Box 12304, Covington, Ky., 41012 (859) 940-3843; TTY: (502) 589-6690 rthompson@calky.org / www.calky.org The Center for Accessible Living is an innovative leader in empowering all people to achieve their goal of independent living while involving the entire community.

Pathfinders for Independent Living, Inc. Sandra Goodwyn 105 East Mound Street, Harlan, Ky., 40831 (606) 573-5777; (877) 340-7284; TTY: (606) 573-5739 / pathfinders@harlanonline.net www.pathfindersilc.org Pathfinders for Independent Living, Inc. helps individuals become self-reliant and live independently to ensure their full inclusion in their family and the community. Pathfinders promotes the independent living philosophy and equal access for all people with disabilities.

Children’s Home of Cincinnati 5050 Madison Road; Cincinnati, Ohio 45227 (513) 272-2800 Cincinnati, Ohio, 45227 http://thechildrenshomecinti.org The Children’s Home of Cincinnati is a private, non-profit social service agency that improves the lives of children and their families through services in four areas: adoption, early childhood, education and mental health. The Home serves children of all ages and their families, including adoptive children, new parents needing support and guidance, children with special education needs, and children with mental health diagnoses.

Christian Appalachian Project Lexington Location 2610 Palumbo Drive, Lexington, Ky., 40509 (859) 269-0635 / (866) 270-4227 www.christianapp.org CAP is a Kentucky-based, non-profit Christian organization committed to serving people in need in Appalachia by providing physical, spiritual and emotional support through a wide variety of programs and services.

Court Appointed Special Advocates for Children CASA of Kenton County 303 Court Street, Suite 707 Covington, Ky., 41011 / (859) 392 1791 www.casaforkidsnky.org Court Appointed Special Advocates or CASA volunteers are everyday citizens appointed by judges to advocate for the safety and well-being of abused and neglected children. Last year in Kentucky, more

2015 Exceptional Family KY

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Resource List 2015 than 700 CASA volunteers advocated for the best interest of more than 3,000 children in 42 counties.

Easter Seals Kentucky At Cardinal Hill Rehabilitation Hospital 2050 Versailles Road, Lexington, Ky., 40504 (859) 254-5701 / www.cardinalhill.org

Easter Seals West Kentucky 801 N. 29th St. / Paducah, Ky., 42001 (270) 444-9687 / www.eswky.easterseals.com

Handi Capable Guide Services P.O. Box 421, Grand Rivers, Ky., 42045 (270) 559-6876 / www.hadicapable.net

Home of the Innocents 1100 E. Market St., Louisville, Ky., 40206 (502) 596-1000 / www.homeoftheinnocents.org Contact: info@homeoftheinnocents.org Home of the Innocents is the region’s open arms to kids in crisis, providing therapeutic, loving care to children who are victims of abuse, abandonment and neglect. It’s also home to children who have autism and other behavioral health diagnoses; who are medically fragile; and families with exceptional needs. Open Arms Children’s Health is the Home’s healthcare facility offering pediatric medical, dental, hearing, vision and pharmacy.

Hospice of the Bluegrass 2312 Alexandria Drive, Lexington, Ky., 40504 (859) 276-5344 / (800) 876-6005 www.hospicebg.org Hospice of the Bluegrass provides physical, emotional and spiritual care for adult and pediatric patients with life-limiting illness, and their families, at home, in nursing facilities and at Hospice Care Centers. Support and bereavement services extend to family members and anyone in the community experiencing grief. Hospice of the Bluegrass provides care in 32 central, northern and southeastern Kentucky counties.

Human Development Institute University of Kentucky 126 Mineral Industries Building Lexington, Ky., 40506 (859) 257-1714 www.hdi.uky.edu HDI’s mission is to promote the independence, productivity and inclusion of people with disabilities and their families throughout the life span. Established in 1969, HDI is a unit of the Office of the Executive Vice President for Research at the University of Kentucky and part of a nationwide network of University Centers for Excellence. The Centers were 34

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established by federal legislation to promote teambased approaches to provide services for individuals with disabilities and their families.

HDI and its sister agencies, the Commonwealth Council on Developmental Disabilities and the Kentucky Division of Protection & Advocacy, form the state’s Developmental Disability Network.

Independence Place, Inc. Lexington Location 1093 South Broadway, Suite 1218 Lexington, Ky. 40504 (859) 266-2807; (877) 266-2807; TTY: (800) 648-6056 / www.independenceplaceky.org Executive Director: Pamela Roark-Glisson Independence Place is a non-profit, consumer driven, non-residential Center for Independent Living, serving people with disabilities of all ages. The mission is to assist people with disabilities to achieve their potential for community inclusion through improving access and equal opportunity.

www.numotion.com With a strong local focus, NuMotion aims to be the most responsive and innovative complex wheelchair company with which to do business.

Pathways P.O. Box 790 Ashland, Ky., 41105 (606) 329-8588 / (800) 562-8909 www.pathways-ky.org

Project SAFE: Kentucky Association of Sexual Assault Programs, Inc. P.O. Box 4028; Frankfort, Ky., 40604 (502) 226-2704 / erecktenwald@kasap.org.

KASAP’s mission is to speak with a unified voice against sexual victimization. KASAP is funded in whole or in part with public funds. www.kasap.org

Redwood

P.O. Box 911074, Lexington, Ky., 40591 (859) 509-9857 www.kerringtonsheart.org Dedicated to the education, support and encouragement of children with heart disease, their families and caregivers.

71 Orphanage Road Ft. Mitchell, Ky., 41017 / (859) 331-0880 www.redwoodnky.org A non-profit organization funded by United Way, Redwood guides children and adults with multiple and severe disabilities to achieve independence and reach their highest potential throughout their lives, by providing enriching educational, therapeutic and vocational services.

Key Assets Kentucky

Recreation Involvement Fund

Kerrinton’s Heart, Inc.

124 West Main St., Mt. Sterling, K., 40353 (859) 497-3800 www.keyassetskentucky.com Key Assets provides support for specialized foster parents who care for children with developmental delays or autism.

Key Services Kentucky 124 West Main St., Mt. Sterling, Ky., 40353 (859) 497-3800 www.keyassetskentucky.com Key Services was created to support children and adults with disabilities within the community. Key Services helps individuals become involved in their community while conquering their goals.

NuMotion Louisville Location 11380 Bluegrass Pkwy, Jeffersontown, Ky., 40299 (502) 266-9061 Lexington Location 973 Beasley St., Ste. 110, Lexington, Ky., 40509 (859) 225-3624 Bowling Green Location 1017 Shive Lane, Ste. E, Bowling Green, Ky., 42103 (270) 904-4934

Commonwealth Council on Developmental Disabilities 32 Fountain Place Frankfort, KY 40601 (877) 367-5332 / kyccdd.com

ResCare 9901 Linn Station Road Louisville, Ky., 40223 / (502) 394-2100 www.rescare.com Provides supports to people with developmental, cognitive and intellectual disabilities. Services include group homes, supported living, in-home, Telecare, foster or companion care and vocational and habilitation.

Ronald McDonald House Charities of the Bluegrass 1300 Sports Center Dr., Lexington, Ky., 40502 (859) 268-0757 / www.rmhclexington.com This charity exists to create and support programs that directly improve the health and well-being of children and to strengthen families by keeping them together in times of medical need.

Shriners Hospital for Children Spina Bifida Program (Orthopedica clinic only, will refer for pediatric and

Resource List 2015 adult care) 1900 Richmond Road, Lexington, Ky., 40502 (859) 266-2101 www.shrinershospitalsforchildren.org Shriners Hospitals for Children has a mission to provide the highest quality care to children with orthopaedic or neuromusculoskeletal disorders and diseases within a compassionate, family-centered and collaborative care environment.

Social Security Disability Insurance www.ssa.gov

Special Needs Adoption Program DCBS/Adoption Branch 275 East Main Street, 3C-E Frankfort, Ky., 40621 / (800) 928-4303 http://chfs.ky.gov/snap.htm

Special Olympics Kentucky 105 Lakeview Court, Frankfort, Ky., 40601 (502) 695-8222; (800) 633-7403 www.soky.org Special Olympics is the world’s largest program of sports training and competition for children and adults with intellectual disabilities.

Superior Van & Mobility 1180 E. New Circle Rd, Lexington, Ky., 40505 (859) 253-1832 / www.superiorvan.com Superior Van & Mobility provides mobility solutions for the consumer and commercial transportation industry. Member of the National Mobility Equipment Dealers Association and a participant in NMEDAs Quality Assurance Program, which is recognition reserved for the highest quality mobility dealers.

United Way of the Bluegrass 100 Midland Ave., Suite 300 Lexington, Ky., 40508 / (859) 313-5465 (859) 233-4460 / Fax (859) 259-3397 www.uwbg.org

United Way of Kentucky

ministers known as the Crusade Advisory Panel decides how donations are distributed each year.

• autism • The Kelly Autism Program Western Kentucky University Clinical Education Complex 104 Alumni Avenue, Bowling Green, Ky., 42101 kellyautismprogram@wku.edu (270) 745-4KAP (4527) www.wku.edu/kellyautismprogram

Wendell Foster Campus 815 Triplett St., Owensboro, Ky., 42303 kap.owensboro@wku.edu (270) 852-1438 or (270) 663-1460 (270) 683-4517 http://kap.wku.edu/web-forms/contact_us.html

Autism Society of the Bluegrass Support Group 453 Rookwood Parkway, Lexington, Ky., 40505 (859) 299-9000 / sspragens@inbsightbb.com www.asbg.org Autism Society of the Bluegrass ASBG (established in 1991) is a chapter of ASA. Its mission is to provide education, advocacy and support to families, educators and health providers affected by ASD in the Bluegrass.

Autism Society of Greater Cincinnati P.O. Box 58385, Cincinnati, Ohio, 45258-0385 (513) 561-2300 / www.autismcincy.org ASGC works to promote awareness and education about autism. ASGC provides information packets, support groups for families and individuals, newsletters and public speakers.

Autism Society of Kentuckiana P.O. Box 21895, Louisville, Ky., 40221-0895 Rebecca Thompson, Kentucky Resident Contact (502) 263-5708 / www.ask-lou.org

P.O. Box 4488, Louisville, Ky., 40204 (502) 583-2821 / Fax (502) 292-5673 www.uwky.org

Families for Effective Autism Treatment

WHAS Crusade for Children

Kentucky Autism Training Center University of Louisville Autism Center at Kosair Charities 1405 E. Burnett Avenue. Louisville, Ky., 40217 (502) 852-4631 or 800-334-8635 ext. 852-4631 http://louisville.edu/education/kyautismtraining/

520 West Chestnut St., Louisville, Ky., 40202 (502) 582-7706 www.whascrusade.org The WHAS Crusade for Children, Inc., established in 1954, raises money for agencies, schools and hospitals to better the lives of children with special needs. An independent board of interdenominational

1100 E. Market Street; Louisville, Ky., 40206 (502) 596-1258 / www.featoflouisville.org

Lexington Adults With Aspergers Meet Up Group Kay Wright / (859) 266-5739 The Church of St. Michael the Archangel 2025 Bellefonte Drive, Lexington, Ky., 40503 sspragens@insightbb.com

Weisskopf Child Evaluation Center 571 South Floyd St., #100, Louisville, Ky., 40202 (502) 588-0907 https://louisville.edu/medschool/pediatrics/clinical/ wcec Provides center-based and outreach diagnostic evaluations and treatment to infants and children with, or at risk for, developmental disabilities, congenital anomalies, genetic disorders, autism, organic behavior disorders (ADHD) and learning disabilities, as well as genetic counseling to adults.

• down • syndrome Down Syndrome Association of Central Kentucky P.O. Box 910516; Lexington, Ky., 40591-0516 (859) 494-7809 / www.dsack.org DSACK exists to celebrate the Down syndrome community, support individuals with Down syndrome and their families, educate the Central Kentucky community and assist in local and national research efforts. DSACK celebrates that all people are beautiful, capable and loved. Serves Central and Eastern Kentucky.

Down Syndrome Association of Greater Cincinnati 4623 Wesley Avenue Suite A, Cincinnati, Ohio 45212 (513) 761-5400 / http://dsagc.com/ By providing families with support, inspiration and information, the Association helps individuals with Down syndrome achieve their maximum potential. Including individuals with Down syndrome in neighborhood schools, community activities and the business world benefits individuals and their respective communities.

Green River Area Down Syndrome Association – Owensboro and surrounding area GRADSA’s mission is to enable families enriched with Down syndrome connection to share resources, build friendships, and advocate together for the future 2015 Exceptional Family KY

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Resource List 2015 of individuals with Down syndrome.

(270) 925-0195 // www.gradsa.org

Down Syndrome of Louisville 5001 South Hurstbourne Parkway Louisville, Ky., 40291 / (502) 495 5088 Down Syndrome of Louisville is a non-profit organization founded in 1977 whose mission is to improve the lives of persons with Down syndrome and their families by providing support, information, education, and advocating for their rights and concerns, enabling individuals to reach their full potential. info@downsyndromeoflouisville.org www.downsyndromeoflouisville.org

Down Syndrome Association of South Central Kentucky PO Box 1611, Bowling Green, Ky., 42101 email: info@dssky.org / www.dssky.org

Down Syndrome Association of Western Kentucky DSAWY promotes public awareness and acceptance of individuals with Down syndrome by providing information, resources and support in our community. Generally, meetings are on the 3rd Monday of the month at the Heartland Worship Center in Paducah.

Holly English: (270) 559-9026 upsandowns@dsawk.com / http://www.dsawk.com

National Down Syndrome Congress (NDSC) The NDSC provides up-to-date information on topics of interest to people with Down syndrome, family members, friends, professionals and interested others. The Center works to promote the availability of and accessibility to a full range of opportunities and/ or resources that meet individual and family needs.

(800) 232-6372 / (770) 604-9500 info@ndsccenter.org / www.ndsccenter.org

National Down Syndrome Society (NDSS) The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

(800) 221-4602 / info@ndss.org www.ndss.org

• epilepsy • Epilepsy Council of Greater Cincinnati 895 Central Avenue, Suite 550 Cincinnati, Ohio, 45202 36

www.lexingtonfamily.com

(513) 721-2905 / (877) 804-2241 efgc@cincinnatiepilepsy.org www.epilepsy-ohio.org

Kentucky Chapter Contact Information: Barbara Washington: bwashington@murraystate.edu www.Kycec.org

Epilepsy Foundation of Kentuckiana

Kentucky Education Agency Rural Representative

Kosair Charities Centre 982 Eastern Parkway; Louisville, Ky., 40217 (502) 637-4440; (866) 275-1078 www.efky.org

• education • Kentucky Adult Education Council on Postsecondary Education 1024 Capital Center Drive, Suite 250 Frankfort, Ky., 40601 (502) 573-5114 V/TTY or (800) 928-7323 V/TTY www.kyae.ky.gov Creative Learning Center Woodland Early Learning Center 575 Woodland Avenue; Lexington, Ky., 40508 (859) 255-3444 www.cclc.com/center/ky/woodland-early-learningcenter

The Council for Exceptional Children The largest international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted.

(888) 232-7733; TTY: (866) 915-5000 www.cec.sped.org

Capitol Plaza Tower 500 Mero Street, Frankfort, Ky., 40601 (502) 564-4474 / www.education.ky.gov

Kentucky Education Rights Center 256 Abbey Road, Versailles Ky., 40383 (859) 983-9222; kerc@edrights.com www.edrights.com

Kentucky State Department of Education Melissa Terrell 500 Mero St., 6th Floor CPT, Frankfort, Ky., 40601 (502) 564-4770 / www.education.ky.gov

The Kidz Club 7140 Preston Highway, Louisville, Ky., 40219 (502) 368-9318 225 N. 25th Street, Louisville, Ky., 40212 (502) 365-2426 527 Watson Road, Erlanger, Ky., 41018 (859) 727-0700 2200 Regency Road, Lexington Ky., 40503 (859) 224-0799 www.thekidzclub.com The Kidz Club is a prescribed pediatric extended care facility that provides skilled nursing care for children who are medically fragile in a day care

Resource List 2015 setting. Kidz Club children range from having highly complex medical conditions to kids that simply need to be monitored or have medication delivered. The Kidz Club provides educational enrichment, therapy follow-through, field trips and activities in a fun and social setting. Transportation can be provided.

Medicaid and private insurance accepted. There are no costs to the child or their family.

Music for Life: Music Therapy and Music Education Patricia Guobis, M. M., MT-BC (502) 767-8308

Northern Kentucky University Office of Disability Services Northern Kentucky University Nunn Drive / University Center Room 101, Highland Heights, Ky., 41099 (859) 572-6373 http://disability.nku.edu/ NKU provides learner-centered assistance and resources to students with disabilities in their transition to Northern Kentucky University.

Public School Parent Resource Centers Nearly all public schools in the state have Parent Resource Centers, which are divided into 11 Regions.

The mission is to remove nonacademic barriers to learning as a means to enhance student academic success. The Centers are also places where families of children with special needs can receive parent-toparent counseling on special education issues and concerns. Families are welcome to visit and preview materials from the lending library, which has many books, videotapes and periodicals related to disability.

The staff can connect parents to resources and support groups and also help with online research.

Region 1: Coordinator Dianne M. Arnett P.O. Box 549, Morganfield, Ky., 42437 5543 State Route 947, Morganfield, Ky., 42437 (270) 285-2553 or (270) 389-0145 Counties Served: Ballard, Caldwell, Calloway, Carlisle, Christian, Crittenden, Graves, Fulton, Hickman, Hopkins, Livingston, Lyon, Marshall, McCracken, Muhlenberg, Todd, Trigg Region 2: Coordinator Dianne M. Arnett P.O. Box 549, Morganfield, Ky., 42437 5543 State Route 947, Morganfield, Ky., 42437 (270) 285-2553 or (270) 389-0145 Counties Served: Butler, Daviess, Hancock, Henderson, Logan, McLean, Ohio, Simpson, Union, Warren, Webster Region 3: Coordinator Naela Imanyara 908 West Broadway, 10 East Louisville, Ky., 40203 (502) 271-7720

Counties Served: Jefferson Region 4: Coordinator Paul Cookendorfer 500 Wilson St., Falmouth, Ky., 41040 (859) 654-3381 Counties Served: Boone, Campbell, Carroll, Gallatin, Henry, Kenton, Oldham, Owen, Shelby, Trimble Region 5: Coordinator Lee Ann Gabbard 3600 Cottage Circle, Lexington, Ky., 40513 (859) 219-3159 or (859) 227-8206 Counties Served: Anderson, Bourbon, Clark, Franklin, Grant, Harrison, Jessamine, Madison, Mercer, Nicholas, Pendleton, Scott, Woodford Region 6: Coordinator Tammy Gay P.O. Box 478, Richmond, Ky., 40476-0478 (859) 200-7777 Counties Served: Bullitt, Boyle, Casey, Clinton, Cumberland, Garrard, Lincoln, Marion, McCreary, Nelson, Pulaski, Russell, Spencer, Taylor, Washington, Wayne Region 7: Coordinator Doug Jones 1750 Eagle Drive, Morehead, Ky., 40351 (606) 207-4287 Counties Served: Bath, Boyd, Bracken, Carter, Elliott, Fleming, Greenup, Johnson, Lawrence, Lewis, Martin, Mason, Menifee, Montgomery, Morgan, Robertson, Rowan Region 8: Coordinator Teresa Combs 821 Belcher Fort Road, Jackson, KY., 41339 (606) 272-7031 Counties Served: Breathitt, Estill, Knott, Lee, Leslie, Letcher, Owsley, Perry, Powell, Magoffin, Wolfe Region 9: Coordinator Maxine Reid P.O. Box 581, Barbourville, Ky., 40906 (606) 546-4767 Counties Served: Bell, Clay, Harlan, Jackson, Knox, Laurel, Rockcastle, Whitley Region 10: Coordinator Mary Ann McKenzie 417 Briarpatch Lane, Frankfort, Ky., 40601 (502) 229-4789 Counties Served: Fayette, Floyd, Pike Region 11: Coordinator Sherrie Baughn Martin P. O. Box 2532, Elizabethtown, Ky., 42702 (270) 505-6533 Counties Served: Adair, Allen, Barren, Breckinridge, Edmonson, Grayson, Green, Hardin, Hart, Larue, Meade, Metcalfe, Monroe.

SHEP Supported Higher Education Project Human Development Institute 1525 Bull Lea Rd Suite #160 Lexington Ky., 40511 (859) 977-4050 The Supported Higher Education Project of Kentucky is based on the understanding that education for all students is a lifelong endeavor. For

too long, students with intellectual disabilities have been overlooked as their peers have graduated from high school and moved on to postsecondary settings. www.shepky.org

VSA Arts of Kentucky 1126 Russell Cave Road, Lexington Ky., 40505 Mary Clare O’Neal (859) 381-4226 www.vsartsky.org

• schools • Child Development Centers of the Bluegrass 290 Alumni Drive, Lexington, Ky., 40503 (859) 218-2322 / www.cdcbg.org Four-Star rated preschool for children with and without disabilities. Services provided include assessment, evaluations, and speech, physical and occupational therapy.

Academy for Individual Excellence 3101 Bluebird Lane, Louisville, Ky., 40299 (502) 267-6187 / www.aiexcellence.com The dePaul School 1925 Duker Avenue; Louisville, Ky., 40205 (502) 459-6131 / www.depaulschool.org

Growing Together Preschool, Inc. 599 Lima Drive, Lexington, Ky. 40511 (859) 255-4056 www.GrowingTogetherPreschool.org Growing Together Preschool, Inc. has been offering nurturing child care and early childhood education to children with and without disabilities in an inclusive environment since 1982. Services include developmental assessment, health screening, evaluations, IEP and IFSP. Staff members have experience working with children of varying abilities and advantages, and integrating recommended therapeutic practices into the classroom. Program is accredited by the National Association for the Education of Young Children. Preschool pioneered the first Kentucky Proud preschool program in the state.

KORE Academy Porter Memorial Church 4300 Nicholasville Road, Lexington. Ky., 40515 (859) 971-7129 / www.koreacademy.org School for children with learning differences: Grades 3-12.

The Langsford Center 9402 Towne Square Ave, Cincinnati, Ohio, 45242 2015 Exceptional Family KY

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Resource List 2015 (513) 531-7400 2520 Bardstown Road, Louisville, Ky., 40205 (502) 473-7000 2805 N. Hurstburn Pkwy. Ste. 103, Louisville, Ky., 40223 (502) 245-1706 / www.langsfordcenter.com

spaces for medically fragile children and children in traditional day care or preschool. Staffed by Registered Nurses, Certified Nursing Assistants, Teachers and Teacher Aides and caring for a wide variety of medical conditions. Medicaid and private insurance is accepted.

The Learning Connection

Stewart Home School

“Where the Right Brain is Visited” Catherine Nagle Senn, Director 2233 Alta Ave.; Louisville, Ky., 40205-1105 (502) 451-8011 / Email: naglesenn@aol.com

4200 Lawrenceburg Road, Frankfort, Ky., 40601 (502) 227-4821 / www.stewarthome.com Discover a residential school that offers lifelong learning, a postsecondary experience, the opportunity to attain a GED, vocational training and countless social and recreational activities among friends from all around the world.

The Lexington School’s The Learning Center 1050 Lane Allen Road, Lexington, Ky., 40504 (859) 278-0501 / www.thelexingtonschool.org The Learning Center provides a unique and essential service to children with language-based differences by offering an alternative to traditional classrooms. By creating a teaching environment that eliminates the major obstacles to learning, students are able to close the gap between achievement and their potential. Teacher-student ratios of 1:4 allow for individualized instruction in the core areas of greatest need. In addition, low student teacher ratios will be maintained in other subjects such as science, social studies, computer skills, specials and social skills.

Meredith Dunn School 3023 Melbourne Avenue, Louisville, Ky., 40220 (502) 456-5819 / www.meredithdunnschool.org

Pitt Academy 6010 Preston Hwy; Louisville, Ky., 40219 (502) 966-6979; http://pitt.com/

Sharon School 200 Oak Tree Lane, Nicholasville, Ky., 40356 (859) 509-6892 / sharonschool@msn.com Homeschool for students with attention deficit disorders, aspergers and learning disabilities.

The Sphinx Academy 1591 Winchester Road #101 Lexington, Ky., 40505 (859) 309-6372 / www.sphinxacdemy.com New and innovative secondary school for grades 7-12. Combines Montessori, homeschooling and special education.

Sproutlings Pediatric Day Care & Preschool Kosair Charities Center 3800 Tom Larimore lane, Masonic Home, Ky., 40041 (502) 753-8222 / www.SproutlingsDayCare.com Sproutlings is a dual-licensed program and has 38

www.lexingtonfamily.com

Summit Academy of Louisville 11508 Main Street; Louisville, Ky., 40243 (502) 244-7090 / apedersen@summit-academy. org www.summit-academy.org

• kentucky • resources Cabinet for Health and Family Services Commission for Children with Special Health Care Needs http://chfs.ky.gov/ccshcn/staff.htm The Commission for Children with Special Health Care Needs has received a grant from the federal Health Resources and Services Administration to create Family to Family Health Information Centers throughout the commission offices. The centers will be staffed by mentors who are parents of children with special needs and will provide support to families of individuals with special needs. Parents and caregivers have the opportunity to connect with another parent or caregiver with a similar situation or special health care need.

Locations: Central office / Louisville 310 Whittington Parkway, Louisville, Ky., 40222 (502) 429-4430 / Toll Free: (800) 232-1160 Serving Bullitt, Carroll, Gallatin, Henry, Jefferson, Oldham, Owen, Shelby, Spencer, Trimble counties and statewide.

Ashland 5850 US 60, Summit Plaza, Box 11 Ashland, Ky., 41102 / (606) 929-9155 (800) 650-1329 Serving Boyd, Carter, Elliott, Floyd, Greenup, Lawrence and Magoffin counties.

Barbourville 110 Johnson Lane, Barbourville, Ky., 40906

(606) 546-5109 / (800) 348-4279 Serving Bell, Clay, Harlan, Jackson, Laurel, Rockcastle, Knox and Whitley counties.

Bowling Green 2040 Louisville Road, Bowling Green, Ky., 42101 (270) 746-7816 / (800) 843-5877 Serving Allen, Barren, Butler, Christian, Edmonson, Hart, Logan, Metcalfe, Monroe, Simpson, Todd and Warren counties.

Elizabethtown 580 B Westport Road, Elizabethtown, Ky., 42701 (270) 766-5370 / (800) 995-6982 Fax: (270) 769-5121 Serving Breckinridge, Grayson, Hardin, Larue, Marion, Meade, Nelson and Washington counties.

Hazard 103 Town and Country Lane, Suite M Hazard, Ky., 41701 (606) 435-6167 / (800) 378-3357 Serving Breathitt, Knott, Lee, Leslie, Letcher, Owsley, Perry and Wolfe counties.

Lexington 333 Waller Ave., Suite 300, Lexington, Ky., 40504 (859) 252-3170 / (800) 817-3874 Serving Anderson, Bourbon, Boone, Boyle, Clark, Estill, Fayette, Franklin, Garrard, Grant, Harrison, Jessamine, Kenton, Lincoln, Madison, Mercer, Nicholas, Powell, Scott, and Woodford counties.

Morehead 214 W. First St., Morehead, Ky., 40351 (606) 783-8610 / (800) 928-3049 Serving Bath, Bracken, Campbell, Fleming, Lewis, Mason, Menifee, Morgan, Montgomery, Pendleton, Robertson, and Rowan counties.

Owensboro 1600 Breckenridge St., Suite 1200, Owensboro, Ky., 42303 (270) 687-7038 / (877) 687-7038 Serving Daviess, Hancock, Henderson, Hopkins, McLean, Muhlenber, Ohio, Union and Webster counties.

Paducah 400 Park Ave., Bldg. D, Paducah, Ky., 42001 (270) 443-3651 / (800) 443-3651 Serving Ballard, Caldwell, Calloway, Carlisle, Crittenden, Fulton, Graves, Hickman, Livingston, Lyon, Marshall, McCracken, and Trigg counties.

Prestonsburg 5000 Ky. Route 321, Prestonsburg, Ky., 41653 (606) 889-1761/ (800) 594-7058 Serving Floyd, Johnson, Magoffin, Martin and Pike counties.

Somerset Professional Plaza, 401 Bogle St., Suite 104, Somerset, Ky., 42503 (606) 677-4120 (800) 525-4279 Serving Adair, Casey, Clinton, Cumberland, Green,

Resource List 2015 McCreary, Pulaski, Russell, Taylor and Wayne counties.

Children’s Law Center Covington Office: 1002 Russell Street Covington, Ky., 41011 (859) 431-3313/ (866) 386-8313 Email: info@childrenslawky.org Lexington Office: c/o Imani Family Life Center 1555 Georgetown Road, Lexington, Ky., 40511 (859) 253-3357 Provides free legal services for children with educational disabilities, and performs research and policy work, training and education in this area.

Email: rbdiloreto@childrenslawky.org www.childrenslawky.org

Kentucky Department for Behavioral Health, Developmental and Intellectual Disabilities Preadmission Screen and Resident Review 100 Fair Oaks Lane, 4E-B Frankfort, Ky., 40621 (502) 564-4527; Benita Jackie: (502) 782-6217 PASRR mandates a preadmission screening and resident review for all persons applying for admission to or residing in a nursing facility. http://dbhdid.ky.gov/kdbhdid/

Commonwealth Developmental Disabilities Planning Council Department for Health Services 275 East Main Street; Frankfort, Ky., 40601 (Cabinet address) The Commonwealth Council on Developmental Disabilities, the Kentucky University Center for Excellence (the Interdisciplinary Human Development Institute), and Kentucky Protection & Advocacy collectively gather input from consumers, family members, service providers, and policy makers to determine the primary issues affecting the lives of people with disabilities in Kentucky. www.autismlink.com/listing/kentucky-developmentaldisabilities-planning-council

Disability Specific Web Resources www.disabilityresources.org The web site has a listing of several services available on the Internet.

Family to Family Health Information Centers Western Region Sondra Gilbert / Sondra.GIlbert@ky.gov (270) 852-2918 / (877) 687-7038, ext. 2123

Eastern Region (Including Louisville) Debbie Gilbert / DebbieA.Gilbert@ky.gov (502) 429-4430 / (800) 232-1160 www.kyf2f.com Located at the offices of the Commission for Children With Special Health Care Needs, Family to Family HICs are family-run centers that assist families of children and youth with special health care needs and the professionals who serve them. The goal is to help keep children healthy by promoting regular medical care. F2F HICs help families make more informed choices by providing support, information,resources and training. F2F HICs promote access to community based, self-directed services that are available to children with special needs.

Hart-Supported Living Program (502) 564-6930 www.chfs.ky.gov/dail/hartsupportedliving.htm The Hart-Supported Living program is for Kentuckians with disabilities to request grants so they can live in, contribute to and participate in their communities. Any Kentuckian with a disability recognized under the Americans with Disabilities Act (ADA) is eligible to apply for a Hart-Supported Living grant.

Homecare Program Department for Aging and Independent Living 275 E. Main St., 3E-E Frankfort, KY 40621 Phone: (502) 564-6930; www.chfs.ky.gov/dail/homecare.htm The Homecare Program helps older adults who are at risk of institutional care to remain in their own homes by providing supports and services to ensure daily needs are provided. This is accomplished primarily by coordinating the help of caregivers and provider agencies.

Kentucky ADA Office 500 Mero Street, Capital Plaza Tower, Frankfort, Ky. 40601 (502) 564-3850 or (877) 423-2933.

The State Office of the Americans with Disabilities Act provides technical assistance, consultations and training to government agencies and programs regarding the Americans with Disabilities Act. Technical assistance and training areas include: employment, programs, services, and facilities.

The Office also responds to inquiries by local governments, businesses and individuals throughout the Commonwealth. www.ada.ky.gov

KATS (Ky. Assistive Technology Service Network Coordinating Center)

200 Juneau Drive, Suite 200, Louisville, Ky., 40243 (502) 489-8285 / Toll Free (800) 327-5287 www.katsnet.org The KATS Network is the Kentucky Assistive Technology program operating within its lead agency, the Office for the Blind, Education Cabinet. It consists of a statewide network of organizations and individuals connecting to enhance the availability of assistive technology devices and services to improve the productivity and quality of life for individuals with disabilities. In addition to the Coordinating Center located in the McDowell Center in Louisville, there are four regional AT resource centers and two partner satellite centers that are participating members of the KATS Network serving Kentucky.

Project CARAT CARAT enables underserved individuals with disabilities in the Appalachian region of Kentucky by collecting, refurbishing and redistributing assistive technology (AT) and durable medical equipment (DME) through a collaborative network of partners.

The goal of Project CARAT is to make Assistive Technology and Durable Medical Equipment more accessible to those who need it in rural Kentucky.

In order to make this happen, Project CARAT is partnering with agencies across the state. www.katsnet.org/projectCARAT/

Kentucky Assistive Technology Loan Corporation 275 East Main Street, Mail Stop 2 E-K Frankfort, Ky. 40621 1-877-675-0195 (Toll Free) 1-502-564-6745 (Fax) / www.katlc.ky.gov The Kentucky Assistive Technology Loan Corporation (KATLC) offers low interest loans for qualified applicants with disabilities who need assistive technology. Working with its lending partner, Fifth Third Bank, KATLC can provide loans for modified vehicles, hearing aids, adapted computers, mobility devices, augmentative communication devices or any other type of equipment or home modification that will improve the quality of life or increase the independence of Kentuckians with disabilities.

Kentucky Cabinet for Workforce Development Connecting Kentucky to employment, workforce information, education and training. http://kcc.ky.gov

Supported Employment Assists persons with disabilities to find and maintain employment. www.ovr.ky.gov/programservices/se/ 2015 Exceptional Family KY

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Resource List 2015 Kentucky Children Insurance Program (K-CHIP) (877) 524-4718 / chfs.kchip@ky.gov K-Chip’s mission is to provide free health insurance coverage to low income, uninsured children in Kentucky. The K-CHIP staff understands that access to health care is very important and that preventive care is a large part of health care. www.kidshealth.ky.gov/en/

Kentucky Comprehensive Care Centers http://dbhdid.ky.gov/cmhc/centers.aspx Four Rivers Behavioral Health 425 Broadway, Paducah, Ky., 42001 (270) 442-7121/ 24-hour Line (800) 592-3980 Serving Ballard, Calloway, Carlisle, Gallatin, Graves, Hickman, Livingston, McCracken and Marshall counties.

Pennyroyal MH / MR Board 1507 South Main Street, Hopkinsville, Ky. 42241 (270) 886-2205 Serving Caldwell, Christian, Crittenden, Hopkins, Lyon, Muhlenburg, Todd, Trigg counties.

River Valley Behavioral Health, Inc. 1100 Walnut Street, P.O. Box 1637 Owensboro, Ky 42301 / (270) 689 6500 Serving Davies, Hancock, Henderson, McLean, Ohio, Union, Webster counties.

Lifeskills P.O. Box 6499, Bowling Green, Ky., 42102 (270) 901-5000 Serving Allen, Barren, Butler, Edmonson, Hart, Logan, Metcalfe, Monroe, Simpson, Warren counties.

Communicare, Inc. 107 Cranes Roost Court, Elizabethtown, Ky., 42701 (270) 765-2605 http://www.communicare.org Serving Breckinridge, Grayson, Hardin, Larue, Marion, Meade, Nelson, Washington counties.

Seven Counties Services, Inc. 101 W. Muhammad Ali Blvd., Louisville, Ky., 40202 (502) 589-8600 Serving Bullitt, Henry, Jefferson, Oldham, Spencer, Shelby, and Trimble counties.

NorthKey Community Care 502 Farrell Dr., PO Box 2680; Covington, Ky., 41011 (859) 578-3200 / 877-331-3292 toll-free www.northkey.org Serving Boone, Campbell, Carroll, Gallatin, Grant, Kenton, Owen and Pendleton.

Comprehend, Inc. 611 Forest Avenue, Maysville, Ky., 41056 (606) 564-4016 Serving Bracken, Fleming, Lewis, Mason, Robertson counties.

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www.lexingtonfamily.com

Pathways, Inc. 1212 Bath Avenue, Ashland, Ky., 4105-0790 (606) 329-8588 Serving Bath, Boyd, Carter, Elliott, Greenup, Lawrence, Menifee, Montgomery, Morgan, Rowan counties.

Mountain Comprehensive Care Center 104 South Front Avenue, Prestsonburg, Ky., 41653 (606) 886-8572 Serving Floyd, Johnson, Magoffin, Martin, Pike counties.

Ky. River Community Care P.O. Box 794, 178 Community Way, Jackson, Ky., 41339 / (606) 666-9006 Serving Breathitt, Knott, Lee, Leslie, Letcher, Owsley, Perry, Wolfe counties.

Cumberland River Comprehensive Care PO Box 568, Corbin, Ky., 40702 (606) 528-7010 Serving Bell, Clay, Harlan, Jackson, Knox, Laurel, Rockcastle, Whitley counties.

Adanta MH / MR Board 259 Parkers Mill Road, Somerset, Ky., 42501 (606) 679-4782 Serving Adair, Casey, Clinton, Cumberland, Green, McCreary, Pulaski, Russell, Taylor, Wayne counties.

Bluegrass.org 1351 Newtown Pike; Lexington, Ky., 40511 (859) 253-1686 / www.Bluegrass.org Serving Anderson, Bourbon, Boyle, Clark, Estill, Fayette, Franklin, Garrard, Harrison, Jessamine, Lincoln, Madison, Mercer, Nicholas, Powell, Scott and Woodford counties.

Kentucky Council for Children with Behavior Disorders karen.frohoff@madison.kyschools.us http://kycec.org/ccbd_about.htm

Kentucky Department of Education: Division of Exceptional Services 500 Mero Street, 18th floor; Frankfort Ky., 40601 (502) 564-4970 johnny.collett@education.ky.gov http://education.ky.gov/specialed/excep/Pages/ default.aspx Oversees funding, special education programs, data collection, personnel development, monitoring of school districts, curriculum development and more.

Kentucky Coalition against Domestic Violence 111 Darby Shire Circle Frankfort Ky., 40601 (502) 209-5382 In addition to providing a safe, secure environment for victims/survivors and their children, programs now

also offer a variety of support services to residents and non-­residents including legal/court advocacy, case management, safety planning, support groups, individual counseling, housing assistance, job search and children’s groups. www.kdva.org/victim_services/kydvcenter.html

Kentucky Education Rights Center, Inc 1323 Moores Mill Road; Midway, Ky., 40347 (859) 983-9222 kerc@edrights.com / www.edrights.com

Kentucky First Steps State Lead Agency 275 E. Main St., HS2W-C, Frankfort, Ky., 40621 (877) 417-8377 http://chfs.ky.gov/dph/firstSteps/How+to+Contact+L ocal+Point+of+Entry+Offices.htm First Steps is a statewide intervention system that provides services to children with developmental disabilities from birth to age 3 and their families.

Administered by the Department for Public Health in the Cabinet for Health and Family Services, First Steps offers comprehensive services through community agencies and service disciplines.

Children who participate in early intervention have significant improvement in development and learning. Helping to decrease the problems early in a child’s development can reduce or prevent costly educational programs in the future.

Barren River District Point of Entry P.O. Box 6499 / 380 Suwannee Trail Bowling Green, Ky., 42103 (859) 901-5749 or (800) 643-6233 Counties served: Allen, Barren, Butler, Edmonson, Hart, Logan, Metcalfe, Monroe, Simpson, Warren Big Sandy District Point of Entry 104 South Front Ave., Prestonsburg, Ky., 41653 (606) 886-4417 or (800) 230-6011 Counties served: Floyd, Johnson, Magoffin, Martin, Pike Bluegrass District Point of Entry 343 Waller Ave., Suite 201 Lexington, Ky., 40504 (859) 271-9448 or (800) 454-2764 Counties served: Anderson, Bourbon, Boyle, Clark, Estill, Fayette, Franklin, Garrard, Harrison, Jessamine, Lincoln, Madison, Mercer, Nicholas, Powell, Scott, Woodford Buffalo Trace District Point of Entry 611 Forest Ave., Maysville, Ky., 41056 (606) 564-3919 or (800) 335-4249 Counties served: Bracken, Fleming, Lewis, Mason, Robertson Cumberland Valley District Point of Entry P.O. Box 568, Corbin, Ky., 40702 (606) 523-0229 or (800) 509-9559

Resource List 2015 Counties served: Bell, Clay, Harlan, Jackson, Knox, Laurel, Rockcastle, Whitley.

FIVCO District Point of Entry 5850 U.S. 60 / Box 11 Summit Plaza Ashland, Ky., 41102 (606) 929-9155 or (800) 650-1329 Counties served: Boyd, Carter, Elliott, Greenup, Lawrence Gateway District Point of Entry P.O. Box 290, Owingsville, Ky., 40360 (606) 674-3204 or (800) 942-4358 Counties served: Bath, Menifee, Montgomery, Morgan, Rowan.

Green River District Point of Entry 1501 Breckenridge St., Owensboro, Ky., 42301 (270) 852-2905 or (888) 686-1414 Counties served: Daviess, Hancock, Henderson, McLean, Ohio, Union, Webster.

Kentuckiana District Point of Entry Seven Counties Services, Inc. 3717 Taylorsville Road, Louisville, Ky., 40220 (502) 459-0225 or (800) 442-0087 Counties served: Bullitt, Henry, Jefferson, Oldham, Shelby, Spencer, Trimble Kentucky River District Point of Entry Morton Blvd. Hazard, Ky., 41701 (606) 439-1325 or (800) 328-1767 Counties served: Breathitt, Knott, Lee, Leslie, Letcher, Owsley, Perry, Wolfe.

Lake Cumberland District Point of Entry 259 Parkers Mill Road, Somerset, Ky. 42501 (606) 678-2821 or (800) 378-2821 Counties served: Adair, Casey, Clinton, Cumberland, Green, McCreary, Pulaski, Russell, Taylor, Wayne.

Lincoln Trail District Point of Entry 108 New Glendale Road, P.O. Box 2609 / Elizabethtown, Ky., 42702 (270) 737-5921 or (800) 678-1879 Counties served: Breckinridge, Grayson, Hardin, Larue, Marion, Meade, Nelson, Washington.

Northern Kentucky District Point of Entry 401 East 20th Street, 2nd Floor Covington, Ky., 41014 (859) 655-1195 or (888) 300-8866 Counties served: Boone, Campbell, Carroll, Gallatin, Grant, Kenton, Owen, Pendleton.

Pennyrile District Point of Entry 735 North Drive, Hopkinsville, Ky., 42240 (270) 886-5186 or (800) 609-0047 Counties served: Caldwell, Christian, Crittenden, Hopkins, Lyon, Muhlenberg, Todd, Trigg.

Purchase District Point of Entry 425 Broadway, Suite 204 Paducah, Ky., 42001 (270) 442-6223 or (800)648-6599 Counties served: Ballard, Carlisle, Calloway, Fulton,

Graves, Hickman, Livingston, Marshall, McCracken.

Kentucky IMPACT Program 275 E. Main St., 4W-G Frankfort Ky., 40621 Phone: (502) 564-4456 Kentucky IMPACT is a statewide program which coordinates services for children with severe emotional disabilities and their families. IMPACT serves children and youth of all ages.

Kentucky Division of Protection and Permanency 275 E. Main St., 3E-A, Frankfort, Ky., 40621 (502) 564-6852 / Fax: (502) 564-4653 http://chfs.ky.gov/dcbs/dpp/ If you believe a child is being abused, neglected or is dependent, call the Protection and Permanency office in your county or the Toll Free Child Protection Hot Line. 1-877-KYSAFE1 or 1-877-597-2331.

Kentucky Office of Victims Advocacy The Office of Victims Advocacy works to ensure crime victims are treated with respect and dignity as their case proceeds through the criminal justice system.

(800) 372-2551 http://ag.ky.gov/criminal/victims/pages/mission.aspx

Kentucky Protection & Advocacy 100 Fair Oaks Lane, Third Floor Frankfort, Ky., 40601

(800) 372-2988/ (502) 564-2967 www.kypa.net Mission is to protect and promote the rights of Kentuckians with disabilities through legally based individual and systemic advocacy, and education.

Staff includes professional advocates and attorneys.

Kentucky PTA P.O. Box 654, Frankfort, Ky., 40602-0654 (502) 226-6607 kentuckypta@bellsouth.net / www.kypta.org

Kentucky Self-Advocates For Freedom State Coordinator: Adrienne Grizzell PO Box 23555, Lexington, Ky., 40523 (859) 245-0717 / ajgrizzell@insightbb.com Funded by the Commonwealth Council for Developmental Disabilities, KSAFF is a statewide organization directed by Kentuckians with disabilities and committed to working in partnership with all interested parties to promote equal rights, inclusion, self-advocacy, support and education in all realms of life. The goals are: Speak Up: Self-Advocates speak up for themselves and teach, coach and support others to speak up for themselves.

Your Rights: Self-Advocates are encouraged to know and exercise their rights.

Education: Self-Advocates are encouraged to inform and educate the general public about rights, needs and issues regarding people with 2015 Exceptional Family KY

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Resource List 2015 developmental disabilities.

Involvement: Participate in decision-making forums regarding policies that impact people with developmental disabilities.

Raise Funds: Advocate for funding for services and supports on behalf of people with developmental disabilities.

Kentucky Special Parent Involvement Network, Inc. (KY-Spin) 10301-B Deering Rd.; Louisville, Ky., 40272 (502) 937-6894 / (800) 525-7746 Fax (502) 937-6464 / www.kyspin.com KY-SPIN, Inc. is a non-profit organization dedicated to promoting programs that enable persons with disabilities and their families to enhance their quality of life. Fully 85% of all program income goes to direct services to families.

The Kentucky Office of Vocational Rehabilitation http://ovr.ky.gov/ Office of Vocational Rehabilitation Central Office Cabinet for Human Resources Building 275 E. Main St., Mail Stop 2E-K, Frankfort, Ky., 40621 / (502) 564-4440 Bowling Green (270) 746-7489 / (800) 443-6055 (800) 246-6193 (TTY) Elizabethtown (270) 766-5121 / (866) 883-0001 Florence (859) 371-9450 / (877) 371-9451 Bluegrass/Lexington (859) 246-2537 / (888) 211-7276 Middletown/Louisville (502) 254-3195 / (866) 304-1958 Whitesburg (606) 633-2568 West Liberty (606) 743-7978 / (800) 440-2530 Louisville (502) 595-4173 / (800) 456-3334 Madisonville (270) 824-7549 / (888) 640-2713 Owensboro (270) 687-7308 / (800) 241-5821 (TTY) (888) 640-2811 Paducah (270) 575-7304 Ashland (606) 920-2338 Carl D. Perkins Center (800) 443-2187

Kentucky Youth Advocates 11001 Bluegrass Parkway, Suite 100 42

www.lexingtonfamily.com

Jeffersontown, KY 40299 (502) 895-8167 / (888) 825-5592 http://kyyouth.org

The Charles W. McDowell Rehabilitation Center Kentucky Office for the Blind 8412 Westport Road, Louisville, Ky., 40242 (502) 429-4460 / www.blind.ky.gov

Pathways to Careers and Special Programs Donnalie Stratton, Program Consultant Capitol Plaza Tower, Room 2113 500 Mero Street, Frankfort, Ky., 40601 (502) 564-3775 / www.education.ky.gov

Personal Care Attendant Program Department for Aging and Independent Living 275 E Main St., 3E-E, Frankfort, Ky. 40621 (502) 564-6930 Ext 3477 www.chfs.ky.gov/dail/pcap.htm Attendant services are provided for people 18 and older with functional loss of two or more limbs and who have the ability to hire and supervise an attendant. Services include assistance with personal care, housekeeping, shopping, travel, self-­care procedures, meal preparation, and other daily activities.

Programs for Children with Disabilities (Ages 3 through 5) Division of Extended Learning Office of Academic and Professional Development 500 Mero Street, Capitol Plaza Tower, 17th Floor; Frankfort, Ky., 40601 / (502) 564-7056 www.kde.state.ky.us (Ages Birth through 2) First Steps Program 3717 Taylorsville Road, Louisville, Ky., 40220 (502) 459-0225; (800) 442-0087 (502) 452-9079 (fax) http://chfs.ky.gov/dph/firststeps.htm Early Intervention Program for Infants and Toddlers with Developmental Delays: Ages Birth to 3.

R.E.A.C.H of Lousiville 501 Park Ave. Louisville, Ky., 40208 (502) 585-1911 / http://reachoflouisville.com

Seven Counties Comprehensive Care Services Appointments: (502) 589-1100 (800) 264-8799/ TDD / www.sevencounties.org A community behavioral health and developmental services center serving Bullitt, Henry, Jefferson, Oldham, Shelby, Spencer and Trimble counties. The

vision of Seven Counties Services is that all persons affected by mental illness, developmental disabilities, addictions and abuse live satisfying, productive and valued lives. Website includes a 93-page Resource Book called “Build Your Future.”

United Partners in Kentucky UP in Kentucky is a functional, non-compensated partnership to enhance each other’s work on behalf of children, youth and young adults with disabilities and their families. The intention is to collaborate with each other, reduce duplication of effort and help determine and influence policies. www.up-in-ky.com

• learning • differences The Curious Edge – The Reading Room Working with children with dyslexia (859) 899-EDGE (3343) 401 Lewis Hargett Circle, Suite 120 Lexington, Ky. 40503 www.thecuriousedge.com

Learning Disabilities Assn. of Kentucky 2210 Goldsmith Lane, Suite 118 Louisville, Ky., 40218 (502) 473-1256 / (877) 587-1256 www.LDAofky.org This comprehensive mental health professional program includes the “co-morbid” disorders often found with individuals with learning disabilities, including Anxiety, Depression, Obsessive Compulsive Disorder, Anger Control/Bipolar Disorder, and ADHD.

The International Dyslexia Assn. – Ky. Branch P.O. Box 255, Wittensville, Ky., 41274 (859) 263-3631 / http://idakentucky.org/

Dyslexia Solutions Inc. (502) 499-2744 / cbaumert@readfluent.com www.readfluent.com

Dyslexia Association of the Pennyrile 3000 Canton, Suite 4 D, Hopkinsville, Ky., 42240 (270) 885-5804 / www.hopkinsvilledyslexia.org

LD Online The world’s leading website on learning disabilities and ADHD. www.ldonline.org/ldresources/local_org/kentucky. html

Resource List 2015

317 East Fifth Street; Cincinnati, Ohio 45202 (513) 651-4747 http://cincinnatidyslexia.org/ A non-profit, scientific and educational organization dedicated to the study and treatment of dyslexia. This Branch was formed to increase public awareness of dyslexia in the Southern Ohio, Southeast Indiana, Kentucky and Huntington, West Virginia areas.

Cardinal Hill Home Care 2050 Versailles Road, Lexington, Ky., 40504 (859) 367-7133 Cardinal Hill Rehabilitation Center/Easter Seals of Louisville 9810 Bluegrass Parkway, Louisville, Ky., 40299 (502) 584-9781 Cardinal Hill of Northern Kentucky 31 Spiral Drive, Florence, Ky., 41042 (859) 525-1128

Progressive Educational Program, Inc.

Charles L. Shedd Kentucky Association

Ohio Valley Branch of the International Dyslexia Association

Joni Strickland, Director of Tutoring Service and Karen Cress, Certified Dyslexia Tester.

212 Venture Way, Somerset, Ky., 42503 (606) 677-2514 www.progressiveeducationalprogram.com Specializing in tutoring children with Dyslexia

• medical • Associates in Pediatric Therapy 1900 Midland Trail, Suite 1 and 2 Shelbyville, Ky.,40065 Louisville Area: (502)-633-1007 Lexington Area: (859)-899-2022 Indiana Area: (812)-542-2771 http://www.kidtherapy.org/ ATP’s unique appeal is that it offers a family approach with multiple pediatric services including Occupational Therapy, Speech Therapy, Physical Therapy, Nutrition, Developmental Intervention, Audiology, and Mental Health Services with Family Therapists and Psychologist’s to the patient and family in a team approach. ATP strives to provide therapy in a variety of locations that is appealing to the patient and family. Offices are located in Bullitt County, Shelby County, Jefferson County, Fayette County, & Oldham County. ATP partners with other pediatric facilities such as All About Kids to provide therapy in a fun and rewarding environment where the child can feel normal.

Brain Injury Alliance of Kentucky 7321 New LaGrange Road, Suite 100 Louisville, Ky., 40222 / (502) 493-0609 www.biak.us

Cardinal Hill Rehabilitation Hospital http://www.cardinalhill.org Cardinal Hill Rehabilitation Hospital 2050 Versailles Road, Lexington, Ky., 40504 (859) 254-5701 Cardinal Hill Center for Outpatient Services 2050 Versailles Road, Lexington, Ky., 40504 (859) 367-7125

4801 Sherburn Ln. LL1 Louisville, Ky. 40207 / (502) 893-0309 www.sheddtutoring.org The Shedd Program provides educational remediation through highly structured teaching methods and materials utilizing a multisensory approach and one-to-one instruction.

Cincinnati Children’s Hospital Center for Infants and Children with Special Needs Cincinnati Children’s Hospital Medical Center; MLC 7009 3333 Burnet Avenue, Cincinnati, Ohio 45229 (513) 636-4200/ (800) 344-2462 TTY: (513) 636-4900 www.cincinnatichildrens.org/svc/alpha/c/specialneeds/default.htm

Dental Care in Northern Kentucky for Special Needs Donated Dental Services / (888) 765-6789

Early Periodic Screening Diagnostic and Treatment Special Services (EPSD) Department of Medicaid Services, Children’s Health Services (800) 635-2570; TTY: (800) 775-0296 www.chfs.ky.gov/dms/epsdt.htm The EPSDT Screening Program provides routine physicals or well child check-ups for Medicaid eligible children at certain specified ages. EPSDT can also provide speech/language, physical and/or occupation therapy, and specialized durable medical equipment for children who qualify and need those services.

Health Point Family Care, Covington 1401 Madison Ave., Covington, Ky., 41011 (859) 655-6100

Home and Community-Based Waiver (HCB Waiver) (502) 564-5707 www.chfs.ky.gov/dms/hcb.htm

The Home and Community-Based Waiver program provides Medicaid coverage to eligible persons who are aged or disabled, who would otherwise require nursing facility level of care.

Services include but are not limited to the following: assessment and reassessment, case management, homemaker services, personal care services, respite care, minor home adaptations, attendant care, and adult day health care.

Horn and Associates in Rehabilitation Greatstone Office 2412 Greatstone Point, Lexington, Ky., 40504 Todds Road Office 4127 Todds Road, Lexington, Ky. 40509 (859) 224-4081 / (859) 224-4261 www.horntherapy.com HRA offers assessments and intervention from a multi-disciplinary team including physical therapy, occupational therapy, speech-language pathology, psychology, developmental intervention, social work and case management. HRA provides independent evaluation and intervention services. HRA addresses concerns of the individual, family and referral sources including physicians, schools and other agencies.

Families are encouraged to participate through evaluations and therapy, and a focus is placed on providing services that can generalize into academics, home, community and job settings.

Kentucky Children’s Hospital University of Kentucky, 800 Rose Street, Lexington, Ky., 40536 (859) 257-1000 / (800) 333-8874 www.ukhealthcare.uky.edu/KCH Established in 1957, UK HealthCare consists of the medical, nursing, health sciences, public health, dental and pharmacy patient care activities of the University of Kentucky, and in several off-site locations.

Kentucky Transitions (Money Follows the Person Demonstration Grant) Kentucky Department for Medicaid Services Division of Community Alternatives KY Transitions 275 East Main, 6 W-B, Frankfort, Ky., 40621 (502) 564-0330 www.chfs.ky.gov/dms/MFP.htm Using funding from the Money Follows the Person Demonstration Grant, the Department for Medicaid Services assists eligible individuals to transition from institutional settings back into the community.

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Resource List 2015 http://chfs.ky.gov/dms/mpw.htm A Medicaid program that helps people live in the community, or go back to the community after living in an institution. The Michelle P. Waiver is for anyone with an intellectual or a developmental disability who is eligible to receive services at an ICF/ID (Intermediate Care Facility – Intellectual Disability), like Oakwood, Hazelwood, or Cedar Lake Lodge.

The Kidz Club 7140 Preston Highway, Louisville, Ky., 40219 (502) 368-9318 225 N. 25th Street, Louisville, Ky., 40212 (502) 365-2426 527 Watson Road, Erlanger, Ky., 41018 (859) 727-0700 2200 Regency Road Lexington, Ky. 40503 (859) 224-0799 www.thekidzclub.com The Kidz Club is a prescribed pediatric extended care facility that provides skilled nursing care for children who are medically fragile in a day care setting. Kidz Club children range from having highly complex medical conditions to kids that simply need to be monitored or have medication delivered. The Kidz Club provides educational enrichment, therapy follow-through, field trips and activities in a fun and social setting. Transportation can be provided.

Medicaid and private insurance accepted. There are no costs to the child or their family.

Julie Kraska, OTR/L Kraska & Associates, Inc. 437 Lewis Hargett Circle Suite 120 Lexington, Ky. 40503 / (859) 219-0956 Private practice providing occupational and speech therapy services. Family-centered approach.

Areas of specialty include sensory integration, sensory processing disorder, fine motor/handwriting, dyspraxia, autism, Asperger’s, articulation, phonological disorders, reading programs.

Marshall Pediatric Therapy 105 Windhaven Drive, Suite 1 Nicholasville, Ky., 40356 Phone: (859) 224-2273, Fax: (859) 224-4675 www.mptcares.com Offers occupational and speech therapy for Lexington and surrounding counties. The practice accepts EPSDT, most private insurance plans, participates with Kentucky First Steps, and offers payment plans and provides need-based scholarships from ages birth to 21.

NorthKey Community Care 502 Farrell Dr., PO Box 2680; Covington, Ky., 41011 44

www.lexingtonfamily.com

(859) 578-3200 / 877-331-3292 toll-free www.northkey.org Serving Boone, Campbell, Carroll, Gallatin, Grant, Kenton, Owen and Pendleton.

Paving the way to a community healthy in mind and spirit – that’s what NorthKey Community Care is working toward in the Cincinnati and Northern Kentucky areas with a comprehensive continuum of mental health, developmental disability and substance abuse care.

Passport Health Plan 5100 Commerce Crossings Drive, Louisville, Ky., 40229 / (800) 578-0603 EST TDD (800) 691-5566 Member Services 7 a.m.-7 p.m. (EST), MondayFriday / www.passporthealthplan.com Passport Health Plan is a Medicaid managed care plan that has been coordinating health services to qualified members since 1997. Passport is community-based and provider-sponsored, and the only non-profit Medicaid health plan available to members in Kentucky. The mission is to “improve the health and quality of life of our members,” which Passport follows every day through exceptional customer service, a large provider network, and case and disease management programs. To learn more about Passport Health Plan, please visit our website, www.passporthealthplan.com., or call our Member Services department at 1-800-578-0603. TDD users should call 1-800-691-5566.

Professional Home Health Care Agency 141 Prosperous Place, Suite 24 Lexington, Ky., 40509 / www.phhca.com Professional Home Health Care Agency, Inc., a non-profit organization, is one of the oldest and largest providers of comprehensive and compassionate home healthcare services in Southeastern Kentucky and Central Tennessee.

Serving: Fayette, Knox, Laurel and Whitley counties in Kentucky and seven counties in Tennessee.

Safe Kids Fayette County Coalition Kentucky Children’s Hospital 800 Rose St., Lexington Ky. 40536 (859) 323-1153 http://ukhealthcare.uky.edu/safekids/ Safe Kids Fayette County is a program of Kentucky Children’s Hospital in Lexington and one of more than 650 grassroots coalitions in all 50 states and 17 countries, the District of Columbia and Puerto Rico that brings together health and safety experts, educators, corporations, foundations, governments and volunteers to educate and protect families. Safe Kids Fayette County Coalition is a member of Safe Kids Worldwide, a global network of organizations dedicated to preventing accidental injury. Efforts are

needed because as many as 90% of accidental injuries can be prevented.

Safe Kids Coalition Kentucky Led by Kentucky Department of Health 333 Waller Ave, Lexington, Ky., 40504 (859) 323-6194 / www.safekids.org Barren County Barren River District Health Department 318 West Washington, Glasgow Ky., 42141 (270) 651-8321, ext. 136 Louisville and Jefferson County Kosair Children’s Hospital 315 E. Broadway, Louisville, Ky. 40202 (502) 629-7335 River Cities Communities King’s Daughters Medical Center 1701 Central Ave., 5th Floor Ashland, Ky., 41101 / (606) 408-9301

SKY Pediatric Dentistry Dr. Mandy Ashley DMD, MsEd, MS 727 US-31 W. Bypass, Suite 101 Bowling Green, Ky., 42101 / (270) 715-5437 www.skypediatricdentistry.com Dentistry for children and teens with special needs.

Square One Specialists in Child and Adolescent Development 6440 Dutchmans Parkway, Louisville, Ky., 40205 (502) 896-2606 / info@squareonemd.com www.squareonemd.com Comprehensive Evaluations: Medical, psychological, psychiatric, educational, and speechlanguage evaluations are offered to help understand differences that impact children’s and adolescents’ development, behaviors, and emotions.

Robert A. Underwood, Ph.D. & Byron White, Psy.D: Edelson and Associates, PSC 7511 New LaGrange Rd. Louisville, Ky., 40223 (502) 423-1151 www.edelsonandassociates.info Neuropsychological, ADHD, Learning Disability, Autism and Psychological Disorder Evaluations.

University of Kentucky School of Psychology Clinic 641 Maxwelton Court, Lexington, Ky., 40506 (859) 257-1381 Psychoeducational assessments, intervention and consultation services to address behavioral, academic, and social-emotional concerns which impact an individual’s learning and development.

University of Louisville Kosair Children’s Hospital

Resource List 2015 231 E. Chestnut Street, Louisville, Ky., 40402 (502) 629-6000 / www.kosairchildrenshospital.com Kosair Children’s Hospital is a 253-bed teaching facility and serves as a referral center for central and western Kentucky, and southern Indiana. The hospital is also the primary pediatric teaching hospital for the University of Louisville health sciences program.

Each year there are approximately 8,000 admissions, 50,000 Emergency Department visits and 10,500 outpatient clinic visits.

Dr. F. Allen Walker Creative Psychiatry P.L.L.C. 10200 Forest Green Blvd. Suite 401 Louisville, Ky. 40223 (502) 384-ADHD (2343) / www.louisvilleadhd.com drwalker@louisvilleadhd.com

• mental health • 360 Mental Health Services Dr. Tim Houchin 1096 Duval Street, Suite 210 Lexington, Ky., 40515 (859) 948-9471 / tim@360mentalhealth.com www.360mentalhealth.com Dr. Tim is one of only 203 physicians triple board certified in child/adolescent psychiatry, general psychiatry and forensic psychiatry. He believes in a holistic, 360-degree approach to evaluating and treating both children and adults.

Acquired Brain Injury (ABI) Waiver (502) 564-5198 or toll free: (866) 878-2626 Acquired Brain Injury Kentucky Branch 275 E. Main Street, 6W-B Frankfort, KY 40621 www.chfs.ky.gov/dms/Acquired+Brain+Injury.htm This program is designed to provide intensive services and support to adults with acquired brain injuries as they work to re-enter community life.

bluegrass.org 1351 Newtown Pike, Lexington, Ky., 40511 (859) 253-1686 24-hour crisis line: (800) 928-8000 www.bluegrass.org Bluegrass.org has served the 17-county Bluegrass Area for more than 45 years, assisting individuals and families in the enhancement of their emotional, mental and physical well-being by providing behavioral health, intellectual/developmental disabilities and substance abuse services.

The Kentucky Assn. of Regional Programs 152 West Zandale Drive, Suite 201, Lexington, Ky.,

40503 / (859) 272-6700

https://sites.google.com/site/kentuckycmhcs A state association whose members are 11 of the 14 community mental health centers in Kentucky.

KARP can connect citizens to their local community mental health center for information about services and support.

Cedar Lake 7984 New LaGrange Rd., Louisville, Ky., 40222 (502) 327-7706 / www.cedarlake.org Cedar Lake is a private, not-for-profit association that incorporated out of common concern for persons with mental retardation and the lack of adequate residential facilities within the area. Cedar Lake was founded in 1970 by Louisville-area parents of persons with intellectual disabilities. Cedar Lake Lodge began providing campus services in 1974, and added “community-based” service options, Cedar Lake Residences, in 1989. Collectively, Cedar Lake operations employ more than 300 staff members and have an annual operating budget in excess of $15 million, providing services to approximately 200 individuals with intellectual and developmental disabilities.

Division of Developmental and Intellectual Disabilities 100 Fair Oaks Lane 4W-C, Frankfort, Ky., 40621 (502) 564-7702; TTY: (502) 564-5777 www.dbhdid.ky.gov/ddid It is the mission of the Division of Developmental and Intellectual Disabilities to empower each person to realize his or her place in the community as a citizen of Kentucky. To accomplish this mission, DDID will partner with and support persons with intellectual or developmental disabilities, families, advocates, stakeholders and government agencies.

Mental Health America of Kentucky 120 Sears Avenue, Suite 213, Louisville, Ky., 40207 (502) 893-0460 / (888) 705-0463 mhaky@kih.net / www.mhaky.org

Mental Health Association of Northern Kentucky 912 Scott Street, Covington, Ky., 41011 (877) 361-4518 / (859) 431-1077 www.mhanky.org

NAMI Kentucky (National Alliance for the Mentally Ill) c/o Somerset Community College 808 Monticello St., Somerset, Ky., 42501 (606) 451-6935 / (606) 451-6936 (800) 257-5081 / namiky@bellsouth.net http://ky.nami.org

NAMI Bowling Green Larry Gregory (270) 303-8232 gregnamibgky@hotmail.com NAMI Buffalo Trace (Maysville) Sharon Darnell (606) 759-4010 ndarnell@maysvilleky.net NAMI Cumberland River Wayne Bullock (606) 256-9250 NAMI Danville Cherine Clark (859) 412-1886 namidanville@gmail.com NAMI Hazard Donia Shuhaiber (859) 537-6869 Namihazard@yahoo.com NAMI Heartland Steve Alexander (270) 351-3730 steve.alexander@hardin.kyschools.us NAMI Henderson/Webster County Beverly Jones (270) 854-6264 bjones.nami@att.net NAMI Hopkinsville Marcia and Jerry Bell (270) 719-0648 namihopkinsville@bellsouth.net NAMI Lexington Adriane Holloway (614) 354-0058 hollowayky@earthlink.net Phill Gunniing Executive Director pgunning@namilex.org NAMI Louisville Michael Gray, Executive Director (502) 588-2008 michael.gray@namilousville.org NAMI Madisonville Mary Poole, President (270) 824-8673 mary.poole@kctcs.edu April Schmitt, Greenville (270) 338-5211 aschmitt@pennyroyalcenter.org NAMI Morehead Carol Mauriello (606) 356-9194 / c.mauriello@ morehead.st.edu NAMI Nelson County Gary Barr, President (502) 471-4064 Gary.barr@ge.com NAMI Northern Kentucky Kathy Keller (859) 392-1730 dbest@namiky.org NAMI Owensboro Frannie Griffith (270) 689-1999 griffdog17@bellsouth.net NAMI Paducah Balinda Hudson (270) 443-3448 bghudson@comcast.net NAMI Somerset Beverly Gaddis (606)-305-5702 NAMI Winchester Brenda Harrington (859) 737-3384 bebe1@bellsouth.net

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Resource List 2015 Traumatic Brain Injury (TBI) Trust Fund (502) 564-6930 http://chfs.ky.gov/dail/braintrust.htm toniaawells@ky.gov This program offers flexible, funding and support for people with traumatic brain injuries. The fund supports supplemental community based efforts to meet the special needs of individuals with brain injury.

• parent support • Kentucky Partnership for Families and Children, Inc. 207 Holmes Street; Frankfort, Ky., 40601 (502) 875-1320 / (800) 369-0533 kpfc@kypartnership.org www.kypartnership.org KPFC’s vision is that all families raising youth and children affected by behavioral health challenges will achieve their fullest potential. KPFC’s mission is to empower families affected by behavioral health challenges to initiate personal and systems change.

The Council on Developmental Disabilities 1151 South Fourth Street, Louisville, Ky., 40203 (502) 584-1239 / Fax: (502) 584-1261 info@councilondd.org / www.councilondd.org The mission of The Council is to initiate positive change on behalf of individuals with developmental disabilities. The Council serves people with developmental disabilities of all ages through all stages of life, connecting families to resources and services and providing training and support.

Resources focus on lifelong education and empowerment of constituents. The Council provides support, resources and information to families; advocates on behalf of people of all ages with intellectual and developmental disabilities; initiates changes in laws and regulations that improve public policies, funding and perceptions of people with ID-DD; provides specialized trainings to families (Medicaid waiver, financial planning, guardianship); and offers six-week LEAD (Leadership Education & Advocacy Development) training for parents on special education laws, Individualized Education Plans and principles of advocacy.

Weber Gallery Weber Gallery specializes in bringing professional artists and artists with disabilities together in integrated exhibitions. Weber Gallery, a program of The Council on Developmental Disabilities, provides an inclusive art venue for talented local, regional and national artists, with a vision toward the inclusion and empowerment of artists with developmental disabilities. Hours: 10 a.m.-4 p.m., Monday-Friday or 46

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by appointment.

The Molly Johnson Foundation P.O. Box 215 / Fisherville, Ky., 40023 (502) 724-0067 www.themollyjohnsonfoundation.org The Molly Johnson Foundation was created two years ago to assist families of children with special needs in a variety of ways, including financial help, supplying medical equipment, home accommodations and travel expenses for services.

The Molly Johnson Foundation desires to make a difference in the lives of these families in the best way possible.

• speech • hearing & language Lexington Hearing and Speech Center 350 Henry Clay Blvd. Lexington, Ky., 40502 (859) 268-4545 / www.lhscky.org Provides diagnostic, therapeutic and educational services for individuals with hearing, speech and language impairments.

audiology by promoting the highest standards for service providers.

St. Rita School for the Deaf 1720 Glendale Milford Road Cincinnati, Ohio, 45215 (513) 771-7600 / http://srsdeaf.org

• service dogs • 4 Paws for Ability University of Kentucky Info: UK4PAWS@gmail.com www.wix.com/lmbrig2/4-paws-at-uk

Kentucky Working K-9 Academy Service Dogs for the Disabled 2856 Lilac Road, Leitchfield, Ky., 42754 (270) 259-3647 www.kentuckyworkingk9.com

• spina bifida •

Kentucky Association of the Deaf

Cardinal Hill Rehabilitation Hospital

PO Box 463 Danville, Ky., 40423-463 www.kydeaf.org

2050 Versailles Road, Lexington, Ky., 40504 (859) 254-5701 Cardinal Hill Center for Outpatient Services 2050 Versailles Road, Lexington, Ky., 40504 (859) 367-7125 Cardinal Hill Home Care 2050 Versailles Road, Lexington, Ky., 40504 (859) 367-7148 Cardinal Hill Rehabilitation Center/Easter Seals of Louisville 9810 Bluegrass Parkway, Louisville, Ky., 40299 (502) 584-9781 Cardinal Hill of Northern Kentucky 31 Spiral Drive, Florence, Ky., 41042 (859) 525-1128

Kentucky Commission on the Deaf and Hard of Hearing 632 Versailles Road, Frankfort, Ky., 40601 (502) 573-2604 (V/TTY); (800) 372-2907 (V/TTY, in Kentucky only) kcdhh@mail.state.ky.us / www.kcdhh.org

Kentucky School for the Deaf 303 South Second St., Danville, Ky., 40422 (859) 239-7017 www.ksd.k12.ky.us/ Ensures that deaf and hard of hearing children and youth have educational opportunities to develop their potential to become educated, life-long learners and productive citizens.

Kentucky Speech-Language-Hearing Association (KSHA) 838 E. High St., Suite 263, Lexington, Ky., 40502 (800) 837-2446 / www.ksha.info The mission is to enhance the provision of quality services to persons with communication disorders and their families. KSHA provides broad-based education opportunities, public awareness and policy development initiatives, and by supporting professionals in speech-language pathology and

Spina Bifida Association of Kentucky Kosair Charities Centre 982 Eastern Parkway, Box 18, Louisville, Ky., 40217 (502) 637-7363 / (866) 340-7225 sbak@sbak.org / www.sbak.org SBAK is a resource center that provides free services and programs to children and adults with Spina Bifida and their families. The mission is to promote the prevention of Spina Bifida and to enhance the lives of all affected. Have you had your recommended daily dose of Folic Acid? Remember, 400mcg of Folic Acid taken before pregnancy can reduce the risk of having a child with Spina Bifida by 70%.

Resource List 2015 Shriners Hospital for Children Spina Bifida Program (Orthopaedic clinic only) 1900 Richmond Road, Lexington, Ky., 40502 (859) 266-2101 www.shrinershospitalsforchildren.org

• vision • Silver Circles, Inc. Catherine C. Barnes, Director & Irlen Diagnostician 2396 New Shepherdsville Road Bardstown, Ky., 40004 / 502-348-7551 www.silvercirclesinc.com The Irlen Method uses colored overlays and precision tinted filters, worn as glasses, to reduce or eliminate perceptual difficulties and light sensitivity.

Department for the Blind 275 E. Main St., Frankfort, Ky., 40601 (800) 321-6668 / (502) 564-4754 http://blind.ky.gov

Family Eyecare Associates & Children’s Vision and Learning Center Dr. Rick Graebe 105 Crossfield Drive, Versailles, Ky., 40383 (859) 879-3665 / (855) 686-2020 www.myfamilyvision.com Family Eyecare Associates and Dr. Rick Graebe offer the best available eyecare for the entire family.

This includes computerized exams for children and adults; and quality eyeglasses, sunglasses and contact lenses. In addition to general optometric services, Family Eyecare offers unique programs such as Vision Therapy for children experiencing difficulty with reading and/or underachievement at school.

Children in these programs average more than a 3-year improvement in performance in 10 to 15 weeks.

Kentucky School for the Blind Division of the Kentucky Department of Education Office of Special Instructional Services 1867 Frankfort Avenue, Louisville, Ky., 40206 (502) 897-1583 / www.ksb.k12.ky.us/ A K-12 public school serving Kentucky students who are blind and visually impaired, offers Short Course program (1-12 weeks) of specialized instruction available to students throughout the school year. Summer school programs are offered in June and July.

Visually Impaired Preschool Service (VIPS) Greater Louisville

1906 Goldsmith Lane; Louisville, Ky., 40218 (502) 636-3207 / (888) 636-8477 www.vips.org VIPS-Central Kentucky P.O. Box 23961 Lexington, Ky. 40523 (859) 276-0335 / (888-254-8477) www.vips.org The mission of Visually Impaired Preschool Services, Inc. is to offer appropriate services to infants, toddlers and preschoolers who are visually impaired or blind and to their families; and to maximize each child’s development potential through direct services, advocacy and community education.

VIPS staff includes certified teachers who specialize in early childhood education, visual impairment, O&M, and special education. Several staff members are also parents of visually impaired children.

• other • organizations Toyota Bluegrass Miracle League Plays at Shillito Park in Lexington North Lexington YMCA / (859) 258-9622 www.ymcacky.org/main/toyota-bluegrass-miracleleague/ Facebook: Toyota Bluegrass Miracle League A baseball program for youth and adults with special needs. The leagues play on a specially designed field located at Shillito Park in Lexington.

The all-accessible field is the only one of its kind in Kentucky with leagues in both spring and fall.

LYSA’s TOPSoccer Program P.O. Box 24844 Lexington, Ky. 40524-4844 (859) 223-5632 www.lysa.org/tops TOPSoccer (The Outreach Program for Soccer) is a community-based soccer program designed to meet the needs of athletes with physical, developmental, and/or intellectual disabilities. Player participation and development are key elements of the program.

TOPSoccer is designed to improve the overall fitness, self-esteem and social skills of your athlete.

Legacy All Sports 261 Ruccio Way, Lexington, Ky., 40503 (859) 977-8862 www.legacy-gymnastics.com Carousel Kidz is a program to meet your child’s special needs with one-on-one gymnastics and dance lessons.

Central Kentucky Riding for Hope PO Box 13155, Lexington, Ky., 40583

(859) 231-7066 lauriston@ckrh.org / www.ckrh.org Operated at the Kentucky Horse Park Under the guidance of trained teachers, volunteers and medical people, disabilities are challenged and new abilities are created. The program has proved successful in helping people with a wide range of disabilities develop self-esteem, confidence, coordination and a sense of achievement while learning horsemanship and track riding principles.

Cerebral Palsy K.I.D.S. Center Kids Center for Pediatric Therapies 982 Eastern Parkway, Louisville, Ky., 40217 (502) 635-6397 www.kidscenterky.org Since 1959, the Kids Center has served families of children with Down syndrome, spina bifida, cerebral palsy, autism, seizure disorders, and a number of other developmental conditions.

Crohn’s & Colitis Foundation of America Kentucky Chapter P.O. Box 573, Prospect, Ky., 40059 (877) 283-7513 / Kentucky@ccfa.org www.ccfa.org/chapters/kentucky/

National Multiple Sclerosis Society Kentucky-Southeast Indiana Chapter 1201 Story Avenue, Suite 200 Louisville, Ky., 40206 / (502) 451-0014 Nationalmssociety.org

TASH Disability Advocacy Worldwide An international association of people with disabilities, family members, other advocates and professionals working for a society in which inclusion of all people in all aspects of society is the norm.

(202) 540-9020 www.tash.org

TASH, Kentucky Chapter Located in Louisville Leslie Lederer: (502) 239-4805 http://tash.org/get-involved/find-a-local-chapter/ ky-tash/

Tourette Syndrome Association Lexington Support Group (859) 223-9007 / hollymaec@gmail.com Louisville Support Group (718) 224-2999 / ermark01@louisville.edu www.tsa-usa.org

YMCA of Central Kentucky (859) 254-9622 www.ymcaofcentralky.org t 2015 Exceptional Family KY

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Associates in Pediatric Therapy Advancing Patients to Their Next Therapeutic Level

Speech Therapy, Occupational Therapy, Physical Therapy & Mental Health Offices located in Louisville, Lexington, Southern Indiana & the surrounding areas.

502.633.1007 or 859.899.2022

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www.lexingtonfamily.com

Kidtherapy.org