DSAW January 2016 Newsletter

ON THE UP WITH DOWN SYNDROME VOLUME 25.1 WINTER 2016

The Down Syndrome Association of Wisconsin Our mission is to provide support to families and individuals with Down syndrome through education, information, programs, services, and the exchange of ideas and experiences.

In this Issue 8 9 10 11 14 16 17 19

2015 Impact DSAW-Family Services Save the Date 2016 Andrew Answers Thank You Partners How Can You Help?

Sustain 21 Member Spotlights

Don’t forget to renew your membership on page 18!

Happy New Year from DSAW’s Executive Director To our amazing families and partners: Greetings & Happy New Year! For those of you whom I have not yet met, my name is Dawn Nuoffer and I would like to introduce myself as the newest Executive Director of the Down Syndrome Association of Wisconsin. I started with DSAW just over a year ago, and wow, has it been an AMAZING first year together! In 2015, we welcomed and supported 250 new families, hosted 7 Down syndrome Awareness Walks across the state, trained more than 2,000 students about how to be a good friend to someone with Down syndrome, and hosted more than 100 riders with special needs at four iCan Shine Bike Camps. To learn more about everything we have done together in 2015, turn to page 8.

2015 was also a year of growth and firsts for DSAW. We welcomed two new chapters to our organization: DSAW-Wausau and DSAW- Kenosha, Racine, & Walworth (KRW). We also launched DSAW-Family Services in 2015, serving 250 individuals with Down syndrome and other special needs with “roadmaps,” transition services, Support Broker Services, Employment Services, and more.

Finally, we launched the “DSAW Presents” Class Series at DSAW-Lakeside, offering Young Leaders Academy, a Junior Chefs in Training Class, and Cooking, Nutrition & Navigating Kitchen Equipment for teens and young adults.

We have more exciting things planned for 2016. We will begin the statewide implementation of the Parent’s First Call Program (PFC), a vital component of our multi-year Prenatal Medical Outreach Program. The objective of PFC is to provide new and expectant parents of babies with Down syndrome and other disabilities an opportunity to connect with other parents who have shared similar experiences in the moments that follow a diagnosis: 24 hours a day, 7 days a week, 365 days each year. (continued on page 2)

(Continued from page 1) We will be implementing a 1-800 number, and parents who call will be given counseling, referrals, and the opportunity to talk with other parents about their concerns and questions. Peer-to-peer support is invaluable during times of confusion, isolation, shock, and sometimes grief. Our Parent’s First Call Program will create lives of hope, exceeded expectations, immeasurable joy, and unconditional love for these families by wrapping networks of support and resources around them to address the complex and yet surmountable challenges facing the Down syndrome community.

Look for more information on how you can get involved with this vital program in the coming months.

In addition to Parent’s First Call, DSAW will be focusing on our new Young Leaders Academy. Young Leaders is a respite program coupled with a unique curriculum that will introduce students to important topics such as work ethic, attitude, communication skills, time management, and more. We are now enrolling for our March 2016 class - turn to page 12 for more information.

And as always, life with DSAW continues to grow, expand, and change. The Marian Center for Nonprofits is closing its doors in the summer of 2016, so DSAW State is looking for a new home (turn to page 12 for more details). We are recruiting leaders to serve on the boards of our new chapters, DSAW-KRW and DSAW-Wausau (more details on page 12), and DSAW continues to advocate and support research and legislation that advocates for individuals with Down syndrome and other special needs (turn to page 13).

Individuals with Down syndrome and their families are more prepared than ever before in history to lead rich and rewarding, meaningful lives... but an agency like DSAW must be at the forefront of cutting-edge programming, individually designed to help them excel at school, at home, in the community, and to prepare them for an independent life with housing, supports, and income. We could not do this incredible work without your historic partnership and dedication. We need you! Because of your support, I am awestruck at all that we have accomplished in 2015, and the bright outlook going forward for individuals with Down syndrome and other special needs in our state.

In 2016, we will also be continuing our best-in-class programs and services. We will train hundreds of students with our Peer Sensitivity Training Program, offer unmatched fraternal support through parent matching and member socials throughout Wisconsin, and our Prenatal Medical Outreach Program will continue to train medical professionals on how to deliver a fair and compassionate Down syndrome diagnosis. Turn to page 5 to learn more about DSAW’s programs and services, and turn to page 10 to “Save the Date” for our biggest events of the year, such as the 20th Annual Tom Pipines Golf Outing and the 20th Annual Down Syndrome Awareness Walk at the Milwaukee County Zoo.

So how can you help? There are endless ways to further the mission of DSAW. A few of them are listed on page 15, such as becoming a DSAW member (application on pg.18), joining Sustain 21 with a monthly or one-time gift (pg. 17), or volunteering your time and talents (pg. 12).

However you choose to give, know that we could not be changing lives without you.

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Thank you, thank you, thank you. Thank you for investing your time, talent and treasure in DSAW’s future. Thank you for believing that with just the right amount of love and supports, individuals with Down syndrome can do amazing things. Thank you for helping Wisconsin to be one of the best-supported states in the country for individuals with Down syndrome. We have big things ahead of us in 2016. With your support, I know that anything is possible.

A special thank you to our corporate sponsors who made our events and so many of our programs and services possible in 2015 (pg.14). Thank you to our amazing donors, and all of DSAW’s members, especially our new members and those who have renewed their membership (pg. 15).

I look forward to serving alongside you in 2016.

Warmly,

Dawn Nuoffer Executive Director Down Syndrome Association of Wisconsin

About DSAW

O u r M iss ion

is to provide support to families and individuals with Down syndrome through education, information, programs, services, and the exchange of ideas and experiences.

O u r V is ion

is that we all understand the value of those with Down syndrome in our lives and our communities. We continually strive toward full acceptance, full access, full life and full potential.

O u r Tea m

DSAW has eight chapters throughout the state. DSAW is now within a 30 minute drive of more than 80% of the individuals with Down syndrome in Wisconsin.

Administrative Staff Dawn Nuoffer, Executive Director

Dawn became DSAW’s Executive Director in December 2014. Her previous experience includes the creation of housing for homeless and disabled veterans, the opening of wrap-around resource centers providing employment and training support, benefits assistance, financial assistance, and a full spectrum of counseling and holistic services for individuals in poverty. She has dreamt big dreams and worked hard with passionate individuals to bring those dreams to fruition for the betterment of some of society’s most vulnerable populations --- dreams like a not-for-profit café which trains veterans in the food service and hospitality industry, or state of the art kitchens training individuals with disabilities and barriers to employment. Dawn has one daughter, Abby, who is 11 years old and has Down syndrome.

Abbey Nicholas, Development & Marketing Associate

Abbey has been with DSAW since February 2015. She graduated from Marquette University in May 2014 with a BA in Social Welfare & Justice, and will graduate from the University of Notre Dame in May 2016 with a MS in Management. She fell in love with working for people with special needs during her time as Administrative Assistant at the Milwaukee Center for Independence. She also has experience in Project Management from her work with InterVarsity Christian Fellowship.

Rebecca Hiegel, Peer Sensitivity and Young Leaders Specialist

Board of Directors

Casey Atkinson, Green Bay Program Manager

Elizabeth Felsheim, La Crosse Program Manager

Mike Knoebel, President Pro Unlimited

Tom O’Day Godfrey & Kahn, S.C.

Pete Loeffel City of Muskego

Andrea Zahn, Treasurer Milwaukee Bucks

Mike Bare Community Advocates Public Policy Institute

Jeff Kallio Racon Capital Partners

Kerry Laurin, CFA, CPA; Secretary Heartland Advisors, Inc.

Liz Streubel Maple Dale-Indian Hill School District

Ellen Trytek Drinker Biddle & Reath LLP

Andrew Gerbitz, Self-Advocate Andrew’s Voice

Sam Wahlen Bode Financial Group

Jim Fackelman Wisconsin Manufacturing Extension Partnership

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Where we’ve been...

1990: DSAW is founded

by Joan Balliet, a nurse and mother of a child with Down syndrome.

2007: The chapter system begins with DSAW’s first chapter, Chippewa Valley.

1995: DSAW hires its first part-time office manager and begins fundraising.

1997: DSAW opens its first office on the northwest side of Milwaukee.

2008: Green Bay becomes a chapter, and DSAW hosts its first “Lose the Training Wheels” event.

2009: DSAW moves state headquarters to the Marian Center in St. Francis.

2000: DSAW launches its first website.

2010: Fox Cities becomes a DSAW chapter. D.A.D.S. group launches. First Peer Sensitivity Trainings are held in schools.

2014: DSAW-Family Services is launched. Dawn Nuoffer becomes DSAW’s new Executive Director.

2012: Prenatal Medical Outreach begins in response to new blood tests that cause record termination rates.

2011: Sheboygan becomes a chapter.

2013: COTH-Greater La Crosse becomes a chapter. Milwaukee becomes a separate chapter.

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2015: Board approves creation of DSAW-Wausau and DSAW-Kenosha, Racine, & Walworth chapters.

...and where we’re going

Programs & Services Fraternal & advocacy support: individuals and families find the support they need right in their local chapter. Families are connected with each other through our member events and family matching programs.

DSAW Family Services provides private, public, and IRIS (Include Respect I Self-Direct) supported services to adults and young adults with Down syndrome, other disabilities and their families to achieve a full and independent life in the community.

Parent’s First Call: information for expectant and new parents, including a support group for fathers (D.A.D.S - Dads Appreciating Down Syndrome).

Ongoing Programming & Support from Birth to Adulthood: whether it’s help in navigating Birth-to-3, advocating for appropriate medical care, support with potty training, developing a robust IEP when entering school, formulating a plan post-high school, or maybe just learning how to ride a bike, DSAW has a program to help.

School Peer Sensitivity Training: typically-abled peers and family members are trained on what Down syndrome is, what it isn’t, and how to be a good friend to someone with Down syndrome.

Medical Outreach: recent advancements in prenatal testing have resulted in skyrocketing termination rates for fetuses with Down syndrome. DSAW conducts trainings for medical professionals around the state on delivering an unbiased, accurate, and compassionate Down syndrome diagnosis.

Grants/Scholarships and Financial Resources for member families: families can access DSAW for financial assistance with therapies, communication devices, or education programs. Individuals with Down syndrome can receive grants to help them pay for school or vocational training, too!

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A LETTER FROM TOM O’DAY, RETIRED DSAW BOARD PRESIDENT When I commenced my role as President of DSAW in 2009, our Board of Directors was a small dedicated group of 4 – 5 leaders. We were confined for the most part to the Southeastern Wisconsin area and did not do any programming out-state. We had just brought on a new executive director, Ron Malloy, to help us get our arms around the organization structurally and to start the process of further developing the suite of services that we could offer to people with Down syndrome and their loved ones. The decisions we made to invest money in infrastructure and staff resources were tough decisions— and I won’t tell you they weren’t controversial within our organization—but we felt they needed to be done.

Now, we have a Board of Directors of 13 strong leaders.

We have a Board of Directors for DSAW—Family Services, our new direct-service organization for people with Down syndrome. We have state committees that are driving the important programming that we do as an organization. We have Advisory Boards of Directors in each of the chapters across the state focused on providing programming and services in their local areas. Within our state and chapter organizations, we have hundreds of day-to-day and eventspecific volunteers. We are a strong organization, one of the best Down syndrome associations in the country, thanks in large part to that group of almost 60 dedicated leaders and our additional day-to-day volunteers. We are making strides toward our goal of becoming the bestsupported state for people with Down syndrome and their loved ones.

It’s hard to believe I left my role as Board President one year ago. I look forward to continuing in my new role where I help our chapters take that next step in organizational development that we, as a state organization, took seven years ago. I look at the place we were at six years ago—a relatively small (but dedicated!) band of leaders with grand vision—and see each of our chapters at that same stage in the process. We are all volunteers, and we want to make the most of our time, talent and treasure. I look forward to working with our chapter leaders to continue establishing a foundation of

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good governance practices. We are continuously looking to recruit new leaders to chapter advisory boards and local committees. Each of our chapters are doing amazing things in their local community; I look forward to helping them continue their good work while growing our programming, reach, and impact.

-Tom

A LETTER FROM MIKE KNOEBEL, ACTING BOARD PRESIDENT Hi, My name is Mike Knoebel and I would like to introduce myself as the president of DSAW’s board of directors. I would first like to thank my predecessor, Tom O’Day, for his continued years of service. I would also like to thank the countless others: board members, committee members, family, and volunteers that have built DSAW into the great organization it is today. I hope to continue your work and vision of transforming Wisconsin into the best supported state for families and individuals with Down syndrome.

In writing this note, I took a look back through some of the history and old newsletters on DSAW’s website. Something struck me: even though we have grown from a purely volunteer organization in the greater Milwaukee area to a statewide group with a full-time executive director, we are still focused on the mission: To provide support to families and individuals with Down syndrome through education, information, programs, services, and the exchange of ideas and experiences. The passion to support our loved ones with Down syndrome is the same today as it was when DSAW started almost 25 years ago.

A little bit about myself: I was introduced to DSAW when our middle child, Matthew, was born in January 2007. We were shocked when we received his postnatal diagnosis of Down syndrome. I’m grateful we received a packet of information from DSAW in the hospital to help us start this journey. We signed up for the DSAW mailing list, and attended a DSAW picnic that summer. I vividly remember the conversation with a mother whose child was in diapers at age 6. I thought to myself, we just potty trained our 2 year old, this must be an exception to the rule. Little did I know that DSAW would help us through the same hurdle in life 6 years later by putting on a professional (and effective) behavioral seminar on potty training.

How I got to the DSAW board: Five years ago, I was searching for DS information on the internet, and came across D.A.D.S. (Dads Appreciating Down Syndrome).

I contacted them, and the founder told me DSAW was in the process of setting up a chapter in the Milwaukee area. I was excited to work with Ron Malloy and the other fathers who made DSAW D.A.D.S. a reality. After chairing the organization for two years, I was honored to be invited to the DSAW board of directors to serve the larger group of our members.

In my professional life I have been a business owner, and today I manage the contingent workforce program for a large local manufacturer. I feel my leadership skills will help me to serve DSAW well over the next few years of my term. I currently volunteer on the stewardship committee at my church, and understand making the most with the limited resources we receive.

I look back, and am so grateful for the pioneers who fought for inclusion for our children, and built DSAW into a solid network of support. I also look to the future with the great things we are doing, or thinking of doing. I am so excited to continue to work with you to provide the great programming, support, and services that truly make an impact on the lives of the people we serve. I invite anyone with a passion for our mission to contact the DSAW office and get involved, join our Sustain 21 campaign, or feel free to contact me with any ideas you think may improve upon our great organization. I appreciate the trust you have placed in me, and I look forward to meeting you.

Over the years my family and I have attended DSAW social events, which helped us develop a network consisting of parents who understood the same but unique challenges we faced. It gave us a support system, but I honestly didn’t even realize the breadth of work DSAW was undertaking.

I was amazed when I found out there was someone on staff who could help walk me through my child’s IEP for school. Or the fact that DSAW brings in one of the world’s leading geneticists to hospitals throughout Wisconsin, to train doctors accurately on Down syndrome diagnoses and medical updates.

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DSAW’s 2015 Statewide Impact 1. Supported 250 new families with information about having a child with Down syndrome.

Provided on-going support and programming to 4,000 supported-families across the state.

2. Added two additional Chapters to our six existing Chapters with replicable service models, strong local leadership, and active participation by members.

3. Directly combated the rapidly increasing termination rates for fetuses with Down syndrome as a result of advancements in prenatal testing by training more than 600 medical professionals in three major health systems across the state. (Green Bay, La Crosse, & Marshfield trained in 2015, Madison and Milwaukee trained in 2014).

4. Launched DSAW-Family Services, serving 250 individuals with Down syndrome and other special needs with “roadmaps,” transition services, Support Broker Services, Employment Services, the creation of 5-year plans...just about anything families need across their lifespan in a 1:1 setting.

5. Hosted 7 Down syndrome Awareness Walks across the state with more than 6,500 walkers, runners, racers, rollers, and strollers...WOW!!!..Combine that with the thousands more volunteers, donors, and supporters...well, you have a person for every 8,000 people with Down syndrome in Wisconsin!!! (Chippewa Valley, Fox Cities, Green Bay, La Crosse, Milwaukee, Racine, and Sheboygan - WE LOVE YOU!!).

6. Hosted 4 iCanShine Bike Camps in 2015 with more than 100 riders with special needs. This week-long camp has an 80% success rate in teaching kids with special needs how to ride a 2-wheel bike. Families and volunteers are truly overwhelmed by the experience. (Chippewa Valley, Green Bay, La Crosse, and Milwaukee).

7. Launched “DSAW Presents” Class Series at DSAW-Lakeside offering Young Leaders Academy; a Junior Chefs in Training Class; and Cooking, Nutrition, & Navigating Kitchen Equipment for teens and young adults. 2016 will bring exciting new programs to the Greater Milwaukee Area and communities across the state.

8. Hosted Member Events and Socials across Wisconsin such as: a statewide celebration of World Down Syndrome Day, Holiday Parties, Halloween Dances, D.A.D.S. Support Groups, Brewer Outings, Summer Picnics, Valentines Socials, Family Resource Nights, Family Bowling Parties, Pool Parties, and so much more. We had a BLAST creating fraternity and raising awareness of the value of individuals with Down syndrome in our lives!

9. Hosted, and partnered to host, educational seminars on a variety of topics including: Potty Training, Behavior, IEP planning, Dual Diagnosis - Autism & Down syndrome, “Sensational Brain,” “Parent’s First Call” Training, “Talk Tools,” Puberty/ Sexuality, and MORE! (A HUGE thank you to our partners who join us in this work).

10. Through DSAW’s Peer Sensitivity Training, we trained students at 7 different elementary schools in La Crosse, Fox Cities, Madison, Milwaukee and in Racine. Upwards of 2,000 children were trained on what Down syndrome is, what it isn’t, and how to be a good friend to someone with Down syndrome.

11. Donated thousands of “Spread the Word to End the Word” Campaign t-shirts to schools all over the state to end the use of the “R” word.

12. Advocated for rich futures for individuals with Down syndrome through the passing of the ABLE Act in Wisconsin, a campaign to save the I.R.I.S long-term care program, AND legislation that would encourage medical professionals to deliver up-to-date, unbiased information and support resources to expectant and new parents of babies with Down syndrome immediately at the time of diagnosis.

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S Po tlight on ds aw-fam i ly s ervi ce s In January 2015, Ron Malloy left his position as the Executive Director of the Down Syndrome Association of Wisconsin to become the first Executive Director of the Down Syndrome Association of Wisconsin-Family Services, Inc (DSAW-FS).

DSAW-FS partners with families to help our loved ones with Down syndrome (and other disabilities) achieve full access, full acceptance and a full life in their community. We are experts in helping individuals who want to self-direct their services and reach their full potential.

Many in Wisconsin self-direct their adult services by hiring individuals instead of agencies to support their life in the community. DSAW-FS writes the job descriptions for these employees, recruits the employees, pre-screens the candidates and helps as much as necessary to support the delivery services. Sometimes we will find others to provide the services and sometimes DSAW-FS will provide the services directly.

So what does “self-direction” mean for me? And, how can I lead an amazing life?

Well, here are just a couple of examples of how DSAW-FS can help you!

Example - One-on-One Roadmap Sessions: After Roadmap Sessions with Ron, a mom in Fox Cities wrote this letter to Debbie Merkel, Fox Cities President:

DSAW offers roadmap sessions funded by the local DSAW chapters to help families plot out a plan of action to overcome the obstacles in their loved one’s life.

DSAW helps individuals with disabilities take advantage of opportunities to live a full, included life. Roadmaps give you a set of detailed action steps that you can take to make your dreams for your loved one come to life.

Families can take the plans and implement them or enlist the help of DSAW for plan implementation.

Example - Helped Someone Find Reliable Transportation: Another young man with Down syndrome in Waukesha County was unable to find transportation home from his job which ended at 6:15pm, and it was becoming more difficult for his parents to provide for his daily transportation. No traditional providers were interested in providing transportation. DSAW Family Services created a job posting, pre-screened drivers, scheduled interviews, and for the last 12 months this young man has for the first time in his life had two reliable drivers not named “Mom and Dad” to help him go shopping, get to Special Olympics and most importantly get home after work.

Example - Helped Someone Find an Amazing Job: We helped a young man find an amazing permanent job at Federal Express SmartPost in New Berlin.

Example - Found an Unpaid Mentor: We helped another young lady whose mom passed away four years ago find another “mom” (unpaid volunteer) to talk with her once a week about mother – daughter things.

DebbieI wanted to thank you so much for getting me in contact with Ron Malloy. He has been a large asset for myself in Gavin’s IEP and BIP. As a single parent I needed support and navigation through these very important things in my son’s life and he has done just that! He was able to meet with me on Sunday, November 1st and again for Gavin’s IEP meeting with the school on Friday, November 6th. I am looking forward to meeting with him in the future to continue to support me in my difficult decisions and helping navigate the most important things that come up with Gavin in the future. I know that he is funded by the Fox Cities Chapter and I am very thankful for them!

Thank you again for all of your support.

Kristy Schleitwiler

For more information or to schedule a consultation: Find us at: http://www.dsaw.org/dsaw-family-services Email us at: info@dsawfamilyservices.org Or call: 414-327-3729

 DSAW-FS is a provider paid by private parties, DSAW Chapters, the County Family Support Programs, the Wisconsin IRIS Program (Include Respect I Self Direct) and the Wisconsin Department of Vocational Rehabilitation (DVR).

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save the date 2016 June 4, 2016 Kenosha/Racine/Walworth Awareness Walk

June 27 - July 1, 2016 Milwaukee iCan Shine Bike Camp

September 17, 2016

Green Bay Awareness Walk

August 17, 2016 20th Annual Tom Pipines Golf Outing

September 25, 2016

La Crosse Awareness Walk

20th Annual State Awareness Walk

September 25, 2016

October 1, 2016

Chippewa Valley Awareness Walk

October 15, 2016 Sheboygan Awareness Walk Page 10

June 11, 2016

Fox Cities Awareness Walk

Check our website (dsaw.org) for upto-date information on each of our walks, as well as information about registration!

Andrew Answers My name is Andrew Gerbitz. I am 33 Years old, work at the YMCA in childcare, live independently in my own apartment, and just started my own business: Andrew’s Voice. I also serve on the DSAW Board of Directors. Oh, and I have Down syndrome.

Each issue in this column, you will have an opportunity to ask me questions.

You may feel like you would like more friends, maybe a special friend. You may feel that people your age who don’t have Down syndrome have more fun than you do.

Maybe you want to be more physically fit, live on your own, drive a car, or get a job.

Write to me c/o DSAW, 3211 South Lake Drive, #113, St. Francis, WI 53235, Attn: Andrew Answers or email info@dsaw.org. Please put “Andrew Answers” in the Subject Line. Your letter will be considered for the next newsletter. Even if your letter is not printed, I will still answer it.

Dear Andrew, In a few weeks I will start my first job. I am really excited, and I want to do my best. Please tell me what it was like when you started your job.

Danielle

Dear Danielle, Congratulations! I hope everything goes well for you. One of the hardest parts is to remember all the instructions you will get. I had to try hard to listen and stay focused. Once we (people with Down syndrome) get into a routine we usually stick to it, and our bosses are pleased. It can get a little tricky if the routine changes. It helped me to have instructions written so I could take the list home and study it. Smile, listen, listen, listen, and ask. Let me know how it goes.

Andrew

More about my new business, Andrew’s Voice Andrew’s Voice allows me the opportunity to make a job out of something I love to do; speak in public on behalf of those with Down syndrome. I have incorporated three aspects into Andrew’s Voice; Down syndrome Awareness, mentoring, and self-advocacy.

Through Andrew’s Voice, I hope to reach large and various audiences in order to raise awareness of Down syndrome, mentor others who have intellectual disabilities, and inspire everyone I meet by sharing my zeal for life and passion in everything I do.

I am working with DSAW-Family Services, DSAW, the Division of Vocational Rehabilitation, and my family to make my new business a success. Learn more at www.andrewsvoice.com.

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Announcements Help Us Find a New Home DSAW State will be leaving the Marian Center this summer, and we are looking for a new home! Can you help? Our ideal space would be centrally-located (near Children’s Hospital might be ideal!), on public transit routes, and easilyaccessible. A dream location would include communal kitchen space, a large gathering area, and perhaps even a retail storefront for future programming growth. If you own real estate, know someone who does, or are willing to partner with DSAW to help us find economical space to lease, please send us an email!

Help Us Get Ready to Move We have an abundance of beautiful walk t-shirts in green, black, and hot pink. We are selling them for $3 each. We are also selling Golf Outing polos for $7 each. First come, first serve. Most sizes are available! Please email Abbey (abbey@dsaw.org) with your order and desired pick-up date.

Now Enrolling: Young Leaders Respite Programming Our Young Leaders Class is a respite program coupled with a unique curriculum that will introduce students to important topics such as work ethic, attitude, communication skills, time management, and more. Caregivers can relax and unwind with other caregivers by attending pre-arranged gatherings during the class at local restaurants! The class is geared towards transition-aged students with any developmental disability that want to work in a community-based setting, or individuals that were previously employed that want to re-enter community-based employment. Classes will be held on the Second and Fourth Thursdays of the month (March 2016 - March 2017) from 6pm to 8pm at the Infinity Healing Center (3305 N 124th St., Brookfield).

For more information, visit dsaw.org and click the Young Leaders icon on our homepage, or email Rebecca: rebecca@dsaw.org.

We need Volunteers We are looking for volunteers to help with the Racine/Kenosha Walk Committee, Golf Outing Committee, Zoo Walk Committee, and also reoccurring programming volunteers. If you are interested in helping out, please fill out our volunteer application at www.dsaw.org.

DSAW is Looking for Interns Are you looking to gain valuable experience for your resume or to earn class credit? DSAW is looking for interns that can work for the summer, a semester, or a full academic year. Hours and schedule are flexible. We are accepting applications for interns in Marketing/Communications, Development, and Social Work/Case Management. This is an opportunity you won’t want to pass up! Find full position descriptions on our website.

DSAW is Hiring DSAW State is looking to hire an Office, Program and Event Assistant. This exciting three-quarter time position (.8FTE) works directly with the Executive Director, the Greater Milwaukee Chapter Advisory Board, and the Kenosha, Racine and Walworth County Chapter Advisory Board to execute programs, special events and services for people with Down syndrome and their families in the Greater Milwaukee, Kenosha, Racine and Walworth County Chapter coverage areas. To read the full job description and apply, visit http://www.dsaw.org/employment-opportunities.aspx Page 12

Resources & Research Plaque Control in Children with Down syndrome

A randomized clinical trial by the Special Care Dentistry Association has found that plaque index improved among children with Down syndrome who used a “Digital Brush” for their daily brushing routines.

Long-Term Care Update from Disability Rights Wisconsin

On Friday, December 18 several members of the Assembly Aging and Long-Term Care Committee issued a letter to the Department of Health Services outlining their suggestions for the redesign of the Family Care and IRIS systems that support individuals with disabilities and older adults. Family Care/IRIS 2.0 is scheduled to go live after January 2017.

The letter suggests various performance measures and other quality indicators for the Department of Health Services to consider. The letter was issued following a November 18 informational hearing in which committee members heard from various national and state-level experts. To read the main points of the letter or find a link to the fulllength letter, visit http://www.disabilityrightswi.org/archives/5739.

Down Syndrome Clinic

The Down Syndrome Clinic at the Children’s Hospital of Wisconsin is an excellent resource for you and your family.

They are able to address each patient’s unique health and wellness concerns at every age. They are connected to local and nationwide networks and resources that can benefit your whole family. They can also offer support and information for your primary care physician. Appointments are available monthly, usually the first or second Friday of the month. For more information, visit www.chw.org/medical-care/down-syndrome-clinic/

AHLA Publishes Free Handbook on Individuals with Disabilities Education Act

The American Health Lawyers Association has published a free handbook for parents about the Individuals with Disabilities Education Act. The handbook covers the laws effects on children from infants to college-aged students, and gives tips about financial aid, IEPs, parents’ rights, and more. For a digital copy of the handbook, visit www.healthlawyers.org.

Ruby’s Rainbow Scholarships

Ruby’s Rainbow will be awarding scholarships to individuals with Down syndrome seeking higher education or postsecondary enrichment classes. Scholarships are up to $3,000 per awarded individual, subject to available funds for 2016. The Maudie’s scholarship is up to $5,000 and is awarded to one select applicant per year. This individual is co-selected by Maudie’s after reviewing all scholarship applications. For more information and to apply, visit their website today.

Connect with our Partners

Our National Partners include the National Down Syndrome Congress, National Down Syndrome Society, Global Down Syndrome Foundation, Down Syndrome Affiliates in Action, Ruby’s Rainbow, and the National Down Syndrome Adoption Network, to name just a few. Please check out these organizations for more resources.

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Thank you to our 2015 Corporate Sponsors:

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Thank you dsaw supporters!

Thank you to our 2015 Contributing Foundation Partners: Allen Foundation Bader Philanthropies, Inc. Marjorie L. Christiansen Foundation Community Fndn of North Central Wisconsin

Endries Family Foundation Evan and Marion Helfaer Foundation GMAR Youth Foundation Green Bay Packers Fndn JJ Keller Foundation Ladish Company Fndn

Otto Bremer Foundation Potawatomi Foundation PPC Foundation Racine Community Foundation Stackner Family Foundation

2015 Top Donors George & Julie Aguilar Allcox & Associates S.C. Allen Foundation Allstate Allcox Insurance Group American Society For Quality Joanne Angelici Anonymous Angel Associated Bank Bader Philanthropies, Inc. Ballard Marine Construction Batteries Plus Bulbs Linda Black Brillion Elementary School Cardinal Capital Management CCB Technology Cedar Ridge Elder Services LLC Anne Chapman Bradley & Katlyn Cherek Children’s Dental Health Center Marjorie L. Christiansen Foundation J.C. Christensen & Associates Community Fndn of North Central WI Jack & Nicole Cook Cream City Construction Curative Care Network The Dentists Amanda Deschane Amy Difiore Grandma & Grandpa Duehring The Dwyer Family East Wisconsin Bank Elcano Dental Endries Family Foundation Erie Insurance Evan and Marion Helfaer Foundation

Everyauto.Com James Fackelman** First National Bank Fox Valley Cheri Fredrickson Jo Freier Paul Freit Gwen Frohmader Gardtec, Inc. John Goeden GMAR Youth Foundation Green Bay Packers Fndn John Heden Andy Hiegel Curtis Hinz The Home Depot The Irwin Family JJ Keller Foundation Mr. & Mrs. John Jung Jr.** Mr. Jeff Kallio** Kidz Town Play and Party Center Gregory Klitgard The Knoebel Family** Ladish Company Fndn Ms. Kerry Laurin** Ned and Jill Lenhart David & Rosemarie Lenz Ms. Rose Levendoski** Mr. Ron Malloy** Mathfab MCS Laura Michaelis Mrs. Celina Mandli Arthur & Mary Ellen Nennig NFL Alumni - Green Bay Chapter Dawn Nuoffer**

Mr. Tom O’Day** David Olson Otto Bremer Foundation Marilyn Parise Lori Paulin Potawatomi Foundation QBS Law S.C. Racine Community Foundation Laurie Rathsack Reason 2 Ride Rust-Oleum Corporation Schmidt Family Foundation Mr. Brad Schoening** Shepherds Ministries Sitzmark Ski Club of Milwaukee, Inc. Steven Smith CnD Specialties Ellen and Allison Spoor Stackner Family Foundation Timothy J Tikalsky Enterprises Time Warner Cable Tranquility Way LLC The Trytek Family United Heartland Valley Custom Fence Phyllis Verhaalen Mr. Samuel Wahlen** Natalie Weber The Westcott Family** Raven Williams Lora & Stuart Wilson Robin Wilson Wisconsin State Council Knights of Columbus Zelko Aesthetics **Denotes Sustain 21 Member

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How can you help?

1

Become a member.

Members are invited to special member-only events and get exclusive access to resources across the State. Plus, annual membership dues are an easy way to support DSAW! Turn to page 18 to fill out an application. Not sure if you’re still a member? Email abbey@dsaw.org to find out your renewal date.

2

Join Sustain 21

3

Volunteer

4

Make a One-time Gift

5

Other Ways to Give

YOU can “Sustain 21” and dramatically impact the lives of our friends with Down syndrome and their families by joining our monthly giving program. Check out the next page to learn more about Sustain 21!

Giving financially is NOT the only way to help! Gifts of time and talent are just as powerful. Turn to page 12 to learn more about our current volunteer needs.

Every bit helps DSAW to increase programming, services, and resources for people with Down syndrome and their families across Wisconsin. Give online at www.dsaw.org.

Give through nontraditional methods like 401K distributions, gifts of stock, and estate planning & bequests. For more information about one of these, email Dawn: executivedirector@dsaw.org.

DSAW also participates in several employee giving campaigns. Look for us in: Combined Federal Campaign, Community Health Charities of Wisconsin, Wisconsin State Employee Combined Campaign, Thrivent Financial’s Thrivent Choice, United Way (write us in!), and any employer-specific giving campaigns (write us in!).

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Share DSAW with your Friends and Coworkers

Would your workplace sponsor a DSAW event, give a grant through their foundation, or volunteer for a special event? Do you have friends looking to get involved in the community? We would LOVE to meet them!

Quality of life begins with you.

Thanks to the supporters and members of the Down Syndrome Association of Wisconsin, DSAW replaces fear with love, confusion with education, and anxiety with opportunity.

There are more than 8,000 people in the State of Wisconsin with Down syndrome.

Over the course of the year, DSAW touches the lives of more than 4,000 of those individuals and their family members through the provision of services, education, resources and support. Whether it’s the scared young couple who having just received the news, fear the unknown; or the families who need support with potty training, learning how to ride a bike, navigating the public school and benefits systems, or those who need help transitioning from high-school to adulthood – the Down Syndrome Association of Wisconsin (DSAW) is there. Visit page 8 to get a peek at our programming.

Our innovative, lifelong, quality programming, and diverse opportunities for individuals with Down syndrome and their families, ensure that individuals with Down syndrome will thrive with full acceptance in their communities, and lead full, happy and meaningful lives.

That opportunity comes in the form of your participation in Sustain 21.

Sustain 21 is a new monthly giving program where supporters like YOU can dramatically impact the lives of our friends with Down syndrome and their families by effortlessly making a monthly gift. This regular financial support shifts focus away from endlessly raising funds, to building stronger relationships with our supported families and enhancing current programming. Sustain 21 allows the true heroes of the programs to get the full attention they deserve.

Any and all support is welcome, with additional value provided at every level of participation. Your monthly gift of $10, $21, $50, or $121 changes not only one person’s life, but so many across the state of Wisconsin. Please consider making as generous a gift as you can – every little bit helps! It starts with a ripple, and when combined with the collective support of thousands of individuals across the State, it becomes a tidal wave of impact.

Visit dsaw.org/sustain21 to learn about the different levels you can participate in and what your contribution would provide an individual with Down syndrome.

Thanks to YOUR support, DSAW is able to provide sustainable, long-term programming. In turn, this means greater opportunity and success for the individuals and their families that rely on the efforts of the Down Syndrome Association of Wisconsin.

It’s about sustaining and improving lives — together. Ready to join Sustain 21? Want to learn more?

Visit dsaw.org/sustain21 TODAY!

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Become a DSAW Member!

The Down Syndrome Association of Wisconsin is a membership-based organization. We do not charge for the majority of our programming, services, and resources. Instead, we ask that families become members of DSAW to help us cover our costs, and promote fraternity amongst our community. Thank you in advance for joining DSAW for the first time, or renewing your membership for the new year!

DSAW Membership Application (or go to dsaw.org and click on membership)

Name_______________________________________________________________________________ Address_____________________________________________________________________________ City_________________________________________State_________Zip________________________ Home Phone_______________________________ Cell Phone________________________________ Email________________________________________________________________________________ Name of loved one with Down syndrome_________________________________________________ Parent

Grandparent

Aunt/Uncle

Sibling

Other

If this is a gift membership, write recepient’s informaton about and write your name here: ____________________________________________________________________________________ Membership Level: $20 one year $30 two years

Additional donation enclosed: $___________________________ Do you know others who would benefit from DSAW programs and services? Include their names and addresses too!

Mail this application with your check to: DSAW | 3211 South Lake Drive, Suite 113 | St. Francis, WI 53235 Checks can be made payable to DSAW Page 18

DSAW Stories

As a community of individuals with Down syndrome and their families, we have a TON of stories to share about overcoming obstacles, achieving dreams, and exceeding expectations. We don’t want these amazing stories to go unheard! We KNOW that your tales will inspire our community, the state of Wisconsin, and the world to dream BIG dreams for individuals with Down syndrome. That’s where our new project, “DSAW Stories” comes in. We want to share your stories with the world. Here are a few from 2015:

We would like to highlight DSAW members Carrie and her son Logan! Carrie & Logan were awarded a technology grant from DSAW to purchase an iPad to help improve Logan’s speech and fine motor skills at home. Pictured here is Logan with his new iPad. Thanks for sharing with us, Carrie!

Nick hired DSAW Family Services as an IRIS (Include Respect I Self Direct) Support Broker to customize a support infrastructure specifically for him. The end goal being the development of employment and independent living skills, which would help him achieve his dreams. One by one, all of the barriers or challenges began to be removed. Transportation challenges were removed.

Professionals to help Nick learn independent living skills were in place. Nick began volunteering in the community and got engaged in a weekly workexperience and summer supplemental programming at the DSAW offices.

Nick started making money and loves having money of his own to spend!!

Nick was learning new things at an amazing pace, things no one thought possible.

Everyone could see the amazing differences in Nick. Because of the generosity of DSAW’s donors, Nick was even awarded a grant which helped him realize his dreams of taking a date to Prom. Nick had an amazing end to high school.

Here’s a picture of Ben at therapeutic horseback riding. He enjoys all aspects, including caring for the horse and the equipment. Look at that pride! The DSAW grant helped make this opportunity possible.

How has your son/daughter/friend/neighbor/sibling (OR YOU) overcome obstacles? How has DSAW helped you on this journey? If you have received a grant from DSAW, we’d especially love to hear about how this grant has changed your life. Send your story and a picture to stories@dsaw.org.

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Down Syndrome Association of Wisconsin 3211 South Lake Drive, Suite 113 Saint Francis, WI 53235 www.dsaw.org | info@dsaw.org Phone: 414.327.3729 | Fax: 414.327.1329 connect with us:

DSAW IS A NON-PROFIT “exceeding expectations every day in every way”

ON THE UP WITH DOWN SYNDROME is published quarterly by the Down Syndrome Association of Wisconsin.

DSAW’s mission is to provide support to families and individuals with Down syndrome through education, information, programs, services, and the exchange of ideas and experiences.

DSAW’s vision is that we all understand the value of those with Down syndrome in our lives and in our communities. DSAW continues to strive towards full acceptance, full access, full life, and full potential.

Update your Contact Information Please fill out this form to update your contact information. Or, email abbey@dsaw.org.

NAME_______________________________________ EMAIL_______________________________________ LOCAL CHAPTER______________________________ ADDRESS____________________________________ CITY___________________STATE_____ZIP________ NAME OF LOVED ONE WITH DOWN SYNDROME ____________________________________________

Please add me to DSAW’s email list Send me information about volunteering

Mail this form to DSAW: 3211 S Lake Drive, Suite 113 St. Francis, WI 53235