ACHIEVA Summer 2016 Newsletter

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Dear Friends of ACHIEVA Each year, as an organization, we reflect on our goals and accomplishments to ensure that we are fostering our mission as ACHIEVA supports and empowers individuals with disabilities and their families. We are pleased that we have been given the opportunity to serve individuals and their families for 65 years, from early intervention to senior programs and trust services, creating lifelong partnerships of caring and support. We see not only the good that has been done in the past year, but the steps that we have taken to ensure ACHIEVA will continue to lead the way supporting and empowering individuals with disabilities and their families.

I am proud to share this Summer Newsletter with you highlighting just some of our many accomplishments during our fiscal year. The past year has been full of success and also change. We are excited for what’s ahead for ACHIEVA. Our advocates are staying focused on legislation and work in state and federal coalitions to support those with disabilities and their families within our communities. Meanwhile, we celebrate the accomplishments we’ve experienced this year, including enactment of The Pennsylvania ABLE Bill and the launch of ACHIEVA’s Vocational Transformation.

ACHIEVA continues to demonstrate sound financial management and accountability measures. Our boards of trustees, staff and stakeholders inspire each and all of us through their professional leadership and vision for ACHIEVA, and most importantly, for those whom we provide support.

We are pleased for your interest in ACHIEVA and thank you for your continued support as we strive to ensure that all individuals with disabilities are fully included in their communities.

With highest regards,

Marsha Blanco President & CEO

“ACHIEVA is setting a clear pathway to increase community contribution and participation through competitive employment opportunities for people with disabilities.”

Marsha Blanco President & CEO Summer

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Content 3 My Life Matters

4 International Advocacy 6 Oral Health 2020 7 ACHIEVA’s Vocational Transformation 11 ACHIEVA’s Charitable Residual 12 ABLE Act Update 14 Playtime with Sensory Activities

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My Life Matters June 2016, as the General Assembly worked to balance the 2016-17 state budget, hundreds of disability advocates rallied at the Capitol, demanding more funding for individuals with disabilities. The 2016 Disability Rally was hosted by the Pennsylvania House Autism and Intellectual Disability Caucus in partnership with 12 non-profit organizations, including The Arc of Pennsylvania. The rally called for an increase in funding for people on the waiting list and increased wages for direct support professionals.

Currently over 13,000 people sit on Pennsylvania’s waiting list for services. In the meantime, their caregivers’ age and concern grows over who will take care of their loved ones. “Parents of children with disabilities hope to outlive their children by just one day, in order to continue to provide the necessary care for their loved ones,” said Nancy Murray, President, The Arc of Greater Pittsburgh.

More funding from the state will give families more options and some security. A funding increase would mean more home and community services for the disability community, including employment, medical and housing assistance and educational programs.

“There are a lot of people in the disability community who are looking for hope and who are looking for opportunity,” said Rep. Dan Miller, D-Allegheny County, co-chair of the caucus. “And, that’s what this caucus is all about.”

The Arc of Pennsylvania and ACHIEVA support a state budget that protects and enhances the rights of people with disabilities to live, learn, work and thrive in their communities. Providing community access to people with disabilities and supporting their families is a core responsibility for our state government.

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International Advocacy This spring, Jeanine Schultz, ACHIEVA’s Director of Advocacy and Family Supports and Nancy Murray, President, The Arc of Greater Pittsburgh, welcomed a group of disability advocates and professionals from Russia. The visitors were part of the International Visitor Leadership Program, invited to the United States under the auspices of the Department of State.

“We are very impressed with the policies and supports that individuals have in the United States.

We will take all of this valuable information back to Russia with us.

It is great to see that individuals are out in their communities, living the life they are choosing with ACHIEVA’s help.”

-Ms. Marina Borisenkova,

Chairperson, Pskov Regional Society of People with Disabilities, Pskov

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The group shared experiences and discussed multiple topics related to people with disabilities and families. Topics of discussion included: special education; integrating students with and without intellectual and physical disabilities; accessibility and facilities accommodations for people with disabilities. The advocates found that, although, most times they are fighting for the same issues on behalf of people with disabilities, often times the barriers are worlds apart.

Although Russia ratified the Convention on the Rights of Persons with Disabilities (CRPD) in 2012, Russia has a long way to go to ensure people with disabilities have access to local, quality, inclusive primary and secondary education, higher education, supplementary services, vocational training and adult education on an equal basis with others. Russian law guarantees everyone the right to education and, as of January 2016, amendments to Russian law ban disability-based discrimination in all spheres of life. However, there is still work to be done.

The Human Rights Watch report, “Left Out? Obstacles to Education for People with Disabilities in Russia”, found that if you are a child living with a disability in Russia, there is a significant chance you will not receive a quality education or any education at all. Many barriers exist that prevent children with disabilities from studying in mainstream schools. These include a lack of ramps or lifts to help children enter and move within buildings and the absence of

accommodations such as large-print textbooks for children with low vision, assistive technology or teachers’ aides. Infrastructure barriers and limited accessible transportation prevent some children from leaving their homes and reaching school at all.

Many children with disabilities remain segregated in specialized schools for children with certain types of disabilities. These schools are often located far from children’s homes and may offer limited academic programs. Other children with disabilities stay isolated in their homes, with very limited interaction with peers and visits from teachers only a few times a week.

The tens of thousands of children with disabilities living in state orphanages in Russia face particularly severe obstacles to obtaining any formal education. Human Rights Watch researchers visited 10 state orphanages for children with disabilities in Russia in 2013-2014 and found that many children suffered serious abuse and neglect on the part of institution staff.

Because of the hurdles the disability community faces in Russia, advocates there search for successful programming to mirror. During their visit to the U.S. there was an in-depth conversation on the policies, programs and financial arrangements used to build workplace accommodations for people with disabilities in the U.S. Advocates from Russia were very interested in the role of social and behavioral research in implementing policies and practices concerning the variety of issues facing individuals, their families and their communities, along with exploring public-private partnerships that provide employment opportunities for people. ACHIEVA’s supports served as a great model for Russian advocates to replicate.

For 65 years, ACHIEVA’s disability advocates have been working with families and self advocates to ensure individuals with disabilities have access to quality educational and community services. ACHIEVA has advocacy offices in Allegheny, Beaver and Westmoreland counties. To contact an ACHIEVA advocate, call 412.995.5000 (x486).

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Oral Health 2020 ACHIEVA’s Disability Healthcare Initiative is making big strides, taking part in the Oral Health 2020 movement. ACHIEVA, along with partners (South Hills Interfaith Movement, Pittsburgh Mercy Health System, Consumer Health Coalition and Pennsylvania Health Access Network), have furthered our understanding of oral health disparities, the public perceptions of oral health and oral health as a social justice issue beyond what we knew from our previous work for those with disabilities.

This year, we completed a landscape assessment survey to gather feedback from the most vulnerable people in the greater Pittsburgh area. We conducted two surveys – one for parents of young children and one for adults. ACHIEVA collected over 1,000 survey responses through food banks, family centers, childhood education programs, health clinics, mobile medical units visiting personal care homes, housing programs for those leaving incarceration, mental health programs, faith groups and low income adults new to health coverage through the Affordable Care Act (ACA) marketplace. From this survey we learned some vital pieces of information to drive our work moving forward.

in the past five years such as a toothache so severe it was hard to carry on daily activities, pain in their gums or loss of teeth. Yet, they often rated their oral health as good.

ACHIEVA’s vision for community health is that we move away from treating oral health as a commodity for those that can buy it. This just can’t be about equality, it must be about equity in those with the greatest health disparities as part of the solution.

We want oral health integrated into education, social services and physical health care for the public at large to have optimal health literacy.

For example, more than half of those that were surveyed have experienced an oral health issue

85% 63% 63% 31% Selected “I have a right to good dental care no matter how much I can pay.”

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Respondents said access to health care is the community issue that matters most

Our children are drinking bottled water on a daily basis, which is not fluoridated

Respondents reported they only go to the dentist when they have a toothache

ACHIEVA’s Vocational TransformaACHIEVA is transforming its vocational programming to focus solely on providing community based, person-centered supports for the individuals with disabilities that we serve. Over the next several years, ACHIEVA will divest itself from providing workshops and training facilities.

This means, ACHIEVA’s vocational supports model will move away from a congregate, facility-based approach to a truly person-centered way of providing supports that promote competitive employment opportunities and/or inclusive community experiences for people with disabilities.

ACHIEVA’s goal is to help individuals make informed decisions, contribute to their communities and experience the benefits that come with gainful employment.

Vocational supports will focus solely on community opportunities and three of the businesses ACHIEVA currently operates: cleaning and janitorial, property maintenance and pallet manufacturing. These three businesses will be integrated and pay at or above the minimum wage.

There will be three key components to this Vocational Transformation: Employment; Creative Arts and Community Experiences.

Employment: ACHIEVA will transition individuals from sheltered settings into community employment, social ventures and entrepreneurships. ACHIEVA will promote individuals gaining real work, for real pay, in the real world.

Creative Arts: ACHIEVA proposes a new model, one that identifies and responds to an individual’s passion and interests. Through this program, individuals with intellectual and developmental disabilities, who are passionate about creating art, can actively pursue art as a career. This program will provide instruction and skills training for adults with disabilities to become professional artists.

Community Experiences: ACHIEVA will build upon the relationships we already have with other community organizations and will seek new relationships to provide volunteer opportunities, community engagement and informal educational opportunities.

If you have questions or would like more information regarding ACHIEVA’s Vocational Transformation efforts, please feel free to contact Shayne Roos, Vice President, ACHIEVA Support at 412.995.5000 (x488) or Eric Welsh, Vice President, Vocational Support at 412.995.5000 (x520).

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Win ,Win, Win Relationship!

ACHIEVA’s Partnership with Rivers Casino started over seven years ago.

At the time, Rivers Casino was focusing on increasing its community partnerships. Since then, Rivers Casino has conducted mock interviews and community experiences for ACHIEVA customers and has employed multiple individuals with disabilities through ACHIEVA. Currently, ACHIEVA has a mobile workforce of people with intellectual and developmental disabilities working at the casino. They make above minimum wage processing marketing gifts and giveaways. Their productivity has been eye-catching. Since February, the group has prepared over a half million dollars worth of materials. Their supervisor is so impressed with their work ethic that she is already exploring more ways to link ACHIEVA customers with future opportunities within the casino.

“I feel that it’s a win, win, win relationship. It’s a win for the casino, a win for the team, and a win for the individuals with disabilities. It is an opportunity for inclusion of people from all walks of life,” - Marne Deithorn, Rivers Casino HR Employment Manager

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At Rivers Casino, they believe 80 percent of a person’s hiring qualifications lie in their personality. If a person is outgoing, positive and hard-working, then that hits most of the requirements for employment in an entrylevel position. On ACHIEVA’s end, staff works to find and recommend people who are a good fit to the Rivers’ friendly and welcoming work culture.

Community Partners, like Rivers Casino, help to serve the more than 520 ACHIEVA customers in ACHIEVA’s Vocational services.

We need more Community Partners to give individuals with disabilities a chance at meaningful employment. For more information on how you or your company can become an ACHIEVA Community Partner, contact ACHIEVA at 412.995.5000 (x583) or employmentfirst@achieva.info.

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Duquesne University & ACHIE-

This year, Duquesne University and ACHIEVA partnered for a 12-week community inclusion pilot program. In collaboration with various schools and departments at Duquesne University and ACHIEVA’s Vocational Department, the program provided choices and opportunities to individuals with disabilities to more fully participate in their community.

The partnership included six key areas: • Volunteerism: Teamwork and Cooperation • Self Advocacy: Rights Education and Being Assertive • Social Skills: Physical Presentation • Education: Employability and Resume Building • Arts & Creative: Exploration and Art as a Vocation • Health and Wellness: Self Care and Positive Self Esteem

The partnership successfully accomplished its goal of exploring new and different ways to promote diversity and inclusion. Community and campus activities were made available to give ACHIEVA customers a fully integrated community experience.

The project ended with participants demonstrating more independence in making decisions and seeking out new relationships. They also showed improved self-advocacy by participation in discussions, exercising the right to choose activities and overall self determination. By being open to different things, participants found an interest in activities they had never experienced.

ACHIEVA is currently exploring similar partnerships throughout Allegheny and Westmoreland counties, with hopes of expanding the partnership with Duquesne University in the Fall of 2016.

“The support we received from the Duquesne University community was exceptional over the course of the 12 weeks. We saw our participants engage in meaningful relationships with students and faculty alike.”

- Eric Welsh, ACHIEVA’s Vice President of Vocational Services 10

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ACHIEVA’s Charitable Residual ACHIEVA Family Trust has offered quality trust services for individuals with disabilities and their families for more than 17 years. Recognizing the financial hardships many individuals with disabilities face and the significant challenges that arise when planning for their financial stability, ACHIEVA Family Trust serves as trustee of several kinds of trusts benefiting individuals with disabilities.

To meet the growing financial needs that families face, ACHIEVA Family Trust also distributes funds for items and services to improve the quality of life of individuals with disabilities through the Charitable Residual Program. People with disabilities generally rely on state or federal funds for healthcare and financial needs; however, those funds are limited and include income caps. ACHIEVA’s Charitable Residual Program gives individuals the opportunity to get supplies and services they desperately need without exhausting their personal funding.

The Program’s goal is to assist those with intellectual, physical and behavioral disabilities who don’t have other resources to obtain a needed product or service. Categories for funding include: Camp & Recreation; Medical; Products or Supplies; Disability-Related Modifications and Caregiving.

Luke

Luke is five years old and has Down syndrome. He’s very energetic and loves to be outdoors. Unfortunately, Luke wasn’t able to get outside as much as his family liked because his home sits very close to a local road, lake and woods. Upgrades to make the home more Luke-friendly were well out of the family’s means.

In March 2016, Luke’s family reached out to ACHIEVA Family Trust and ultimately received $4,950 for home modifications.

Now there is a safe and open outdoor space for Luke to safely play for hours.

“Luke thanks all of you for his new fence!! What a wonderful gift from all of you at ACHIEVA to help keep him safe.”

Applications for the Charitable Residual Program are reviewed on a quarterly basis, with deadlines in January, April, July and October. For information, including details on how to apply visit, www.achievafamilytrust.org.

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What You Need To Know About The Steven Beck Achieving a Better Life Experience Act (ABLE Act) was signed by President Obama and became law on December 19, 2014. Governor Wolf signed Pennsylvania’s ABLE legislation, Act 17 of 2016, on April 18, 2016.

ACHIEVA has been at the table from the beginning by helping to draft one of the original ABLE bills in Pennsylvania and currently have Nancy Murray, President, The Arc of Greater Pittsburgh and Amy Dolan Strano, President, ACHIEVA Family Trust, serving on the Pennsylvania Department of Treasury’s ABLE Advisory Committee. As information becomes available from the PA Treasury regarding PA ABLE accounts, ACHIEVA will be a resource for people with disabilities and their families.

The ABLE Act, creates a new provision under Section 529 of the Internal Revenue Service Code, which allows states to create a new option for eligible people with disabilities to save money in a tax-exempt account that may be used for qualified disability expenses while still keeping their eligibility for most federal benefits such as Social Security Income (SSI) and Medicaid. SSI payments will be suspended if the ABLE account balance exceeds $100,000, but SSI eligibility will not be terminated. Nor will Medicaid benefits be suspended if the ABLE account balance exceeds $100,000. ABLE assets do not impact state benefits.

To be eligible for an ABLE account, a person must have developed a disability prior to the age of 26; have been found eligible for Supplemental Security Income (SSI) or Social Security Disability Income (SSDI) benefits and are receiving benefits or have obtained a signed “disability certification” from a physician that states the person’s diagnosis and that the person meets the functional disability criteria, according to the ABLE Act. Contributions to ABLE accounts are made with post tax dollars. Therefore, distributions from ABLE 12

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accounts for qualified disability expenses are exempt from federal taxation. However, distributions not used for quality disability expenses are taxable and subject to an additional 10% tax.

State tax consequences will vary. In Pennsylvania, the earnings and contributions made to an ABLE account are exempt from state taxation.

An ABLE account is owned by the person with a disability (the designated beneficiary); each person may have only one ABLE account and may open the account in whichever state the person chooses.

Multiple individuals may contribute to the account, but total annual contributions may not exceed the federal gift tax limit, which is currently $14,000.

The total amount of contributions to an ABLE account may not exceed the state limit for 529 plans. Pennsylvania’s limit is currently $511,758.

Additionally, in Pennsylvania, upon the death of a designated beneficiary, proceeds from an ABLE account may be transferred to the estate of the designated beneficiary. The Commonwealth is prohibited from seeking payment from an ABLE account for Medicaid benefits provided while the person was living.

Money in the ABLE account may be made for qualified disability expenses related to the individual’s disability or blindness that help the person maintain health, independence and quality of life. They include basic living expenses and not just expenses for items for which there is a medical necessity, including: education; housing; transportation; employment training and support; assistive technology and personal support services; health, prevention and wellness; financial management services; legal fees; and funeral and burial expenses.

ACHIEVA will continue to provide information about PA ABLE as it becomes available from the PA Treasury.

Federal Representatives and Senators, including Senator Bob Casey (D-PA), have recently introduced three bills to raise the age limit for eligibility for ABLE accounts from 26 to 46; to allow families to rollover savings from a 529 college savings plan to an ABLE account and to allow an ABLE beneficiary who earns income from a job to contribute an extra $11,700 (federal poverty level) into their ABLE account each year.

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Playtime with Sensory ActiviPlaytime with sensory activities is easy for families to do on their own at home!

Have some fun with these activities this Summer!

ACHIEVA Early Intervention therapists are highly trained in child development and use the best tools to help a child reach their fullest potential. For nearly 30 years, ACHIEVA Early Intervention has mastered making learning fun. Our highly trained therapists, specialists and experts support over 750 families each year by incorporating therapeutic techniques in the child’s daily activities and their family’s routine so that the child is continually working towards meeting milestones even during the time the therapist is not present in the home.

Each year, ACHIEVA Early Intervention hosts a Sensory Picnic featuring developmentally appropriate sensory activities, including water play, bubbles, an obstacle course and even a ‘make your own sensory bottle’ station. All children who receive services, through ACHIEVA Early Intervention, are invited.

This year, the picnic incorporated the STEM (science, technology, engineering and math) concepts into the sensory activities. Focus on STEM concepts at a young age is achieved by encouraging exploration, curiosity and learning about the way the world works.

The additional focus on the STEM approach resulted in a very positive experience for the families in attendance.

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Sensory Bottles: Sensory bottles encourage creativity and exploration and generally are popular with the toddler aged child. To make the sensory bottle, gather a variety of objects that will fit inside a plastic water bottle and allow your child to place a selection of them inside.

The possibilities are endless, but some great inclusions are: uncooked pasta, rice, beads, glitter, pom poms and buttons. If you like, you can fill the bottle with water and your child will delight in the objects floating around inside. Be sure to use super glue to secure the cap onto the water bottle!

Homemade Play dough: Play dough is always a fun sensory activity for young children. They can mold the dough into shapes, make impressions with cookie cutters or small toys or bury objects inside and dig them out. Making homemade dough is fun and certainly less expensive than store bought. To make the dough, combine one cup of scented hair conditioner with two cups of cornstarch and mix, then mold with your hands until the dough forms.

Save the Dates August 15, 2016 Million Dollar Golf Outing

Each year, golfers return to Valley Brook Country Club in McMurray for its beautiful and pristine 27-hole course. The day includes brunch, dinner, prizes and gifts, including a chance at the Million Dollar Hole-in-One prize.

For additional information, contact Jamie Rhoades at 412.995.5000 (x526) or jrhoades@achieva.info.

December 5, 2016 Awards of Excellence The ACHIEVA Awards of Excellence, at Station Square Pittsburgh, honors a group of extraordinary individuals, organizations and community groups, each year, who go above and beyond on behalf of people with disabilities.

For more information or to nominate someone, contact Peggie Watson at 412.995.5000 (x420) or pwatson@achieva.info.

March 2017 Pittsburgh Promenade

This annual event, at the Westin Convention Center Hotel, benefits children and adults and their families who turn to ACHIEVA each year for supports and services. The evening includes a live and silent auction, as well as a $10,000 raffle drawing.

For additional information, contact Jamie Rhoades at 412.995.5000 (x526) or jrhoades@achieva.info.

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ACHIEVA Boards of TrustACHIEVA Board of Trustees Chair: Michael L. Dever, Esq. Vice Chair: Chaz R. Kellem Trustees:

Sean J. Carmody, Esq. Lou Dinardo Greg Fajt, Esq. Beth Fulena Meghan Gannon Anderson Mary Lou Gegick

Chair Elect: Mary D. Richter, CPA Past Chair: Robert McDowell

Gary Grysiak Jennifer C. Johnson, Esq. Michael G. Meyer Jeremy Shapira Lisa G. Silverman, Esq. Stephen B. Spolar, Esq.

Gary Teti Ronald Toncini Rob Unkovic Dr. Reed Van Deusen Honorable William Ward James Woll

ACHIEVA Support Board of Trustees Chair: Mary D. Richter, CPA Vice Chair: Thomas M. Lee Trustees:

Joanne Christopher Nancy Gannon Raymond Giarrusso Jerry Goodrick

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Chair Elect: Paul Long Past Chair: Chaz R. Kellem John S. Lynch John B. Matlak Matt Oxenreiter Alexandra Robinson

Gary Scalise Josh Scott Cheryl Simchak

2016 - 2018

ACHIEVA FamilyBoard Trust Board of Trustees ACHIEVA of Trustees Chair: Jennifer C. Johnson, Esq. Chair, RobertHolly McDowell Vice Chair: Hoff Vice Chair, Mary D. Richter CPA Trustees: Trustees, James Calhoun

Chair Elect: Stephan P. Hubbard, CLU,ChFC Chair Elect,Beth Michael L. Dever Esq. Past Chair: Fulena Past Chair, William E. Westitian, Esq. CPA

LeeAnn A. Fulena, Esq. Mark Brown Mary Gegick Jr., Esq. Bernard C. Caputo, Esq. FosterLou S. Goldman, Sean J. Carmody, Esq. John Haglund Julie Dever Kimberly Jackson Louis DiNardo Dorothy M.Lee Horvath Phoebe Downey Honorable Mazur Greg Fajt., Esq. Chaz Kellem

Beth Fulena Suzanne Parks

Suzanne Parks Edward W. Price Jeremy Shapira Joan Shoemaker, Esq. Lisa G. Silverman, Esq. Kristen Stokes, Esq. Stephen B. Spolar, Esq. Scott Yochum Gary Teti Martha Zatezalo, Esq. James Woll

The Arc of Greater Pittsburgh Board of Trustees

Chair: Michael G. Meyer Vice Chair: Dr. Nina Butler Trustees:

Robie Bruesewitz Fran Carter Carla Devlin

Chair Elect: Jillian F. Zacks, Esq. Past Chair: Meghan Gannon Anderson

Stacey Diaz Robert L. Kelley Ted Meyer

Dan Morgan Elizabeth Powers Kitty Williams

The Arc of Westmoreland Board of Trustees Chair: Ronald Toncini Vice Chair: Jerry Moschetti, Jr. Trustees:

Gregory C. Moore, Esq Edward W. Price

Chair Elect: James M. Duffy, Esq. Past Chair: Gary Teti

Gary L. Sellers David Tilstone

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ACHIEVA NEWS 711 Bingham Street Pittsburgh PA 15203 www.achieva.info 412.995.5000 1.888.272.7229