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How can I affect bigger issues regarding individuals with Down syndrome?
Major issues for persons with disabilities include getting a quality education, access to community-based quality residential living services (including housing and transportation) and getting a meaningful job, which offers some economic self-sufficiency.
These are daunting tasks, but the good news is you can make an impact.
Politicians campaigning for elected offices today will determine future public policy. Public policy is important to all citizens. Who we elect to represent us and our concerns matter — to members and families of the National Down Syndrome Congress.
As you decide who will get your vote in November, learn where candidates stand on these important issues by asking questions. Start by asking candidates if they have a written position statement on disability policies. If they don’t have one, ask why and offer to share your expertise as a parent or family member of a person with Down syndrome on critical issues that your family faces.
Additionally, one of the most effective ways to have an impact on federal legislation is to contact your senator or representative when an issue of importance is at the front of the legislative agenda. NDSC governmental affairs will often issue “calls for action” to our members letting them know when to contact their elected congressional representatives about issues affecting individuals with Down syndrome. You can stay up to date on these calls to action by liking our Governmental Affairs Facebook page.
- Questions for political candidates on important issues
- Questions for Candidates on Education and EmploymentPrior to 1971, public schools had no obligation to educate children with disabilities and many did not. The Education for All Handicapped Children Act of 1975 (later renamed the Individuals with Disabilities Education Act — IDEA) guarantees all children the right to a free and appropriate public education in the school they would otherwise attend if they did not have disabilities. The goal of education for all individuals is to prepare them for a meaningful career, economic self-sufficiency and a meaningful life in the community. Despite the fact that this law was passed more than 30 years ago, the unemployment rate for individuals with disabilities remains at about 90 percent.
Questions for candidates
- Should schools provide the same opportunities (academic and non-academic) for students with disabilities as they do for non-disabled students?
- When parents disagree with schools and need to utilize due process procedures, do you think the burden of proof should be on the parents or the schools?
- Should parents be required to pay expert witness fees when they use an expert witness in a due process hearing?
- Do you think transition services (for ages 18-21) to prepare students with disabilities for jobs and other post-secondary opportunities should be real jobs in the community with people who are not disabled?
- Do you think the Individuals with Disabilities Education Act should be fully funded at the federal level as was promised when initially passed?
- Do you think that all people with disabilities should have the opportunity to work at a real job with competitive wages?
- What would you do to increase work opportunities for people with disabilities?
- Questions for Candidates on Community Living ServicesThe federal/state Medicaid program funds most adult services such as housing, transportation and support staff who provide assistance to individuals with disabilities with the activities of daily living. It also provides services to some children with disabilities. It is a funding stream that is biased towards costlier institutional care and under siege at the federal and state levels.
If you want those safety net services to be in place when your child grows up — or to remain in place if your family member with Down syndrome now uses them — then you need to know where candidates stand on funding adult services.
Question for Candidates
- What would you do to ensure that federal and state budget shortfalls do not harm programs and support services for individuals with disabilities to live in their community?
- What do you see as the role of the federal government in disability policy?
- What do you think of the trend to limit the role of the federal government in disability policy?
- What do you see as the role of disability advocates as states move to managed care systems to deliver Medicaid (community-based support services) to adults with disabilities?
- What would you do to ensure that federal and state budget shortfalls do not harm programs for individuals with disabilities?
This list is not exhaustive – feel free to develop your own questions. You can always ask a follow-up question.
- Questions for Candidates on Education and Employment
- Self-Advocates in Action
- Benjamin 'Jamie' Veerhoff
Benjamin “Jamie” Veerhoff – Kensington, MD 20895
My name is Jamie Veerhoff. I love working on political campaigns, studying history, and watching classic movies and plays. I am an actor and an athlete. I like to stay in touch with my family and friends by chatting on the phone, visits, and Facebook and texting. I have cousins and friends in Toronto, New Zealand and Beijing, and from all over the world. I have an identical twin, Will, who also has Down syndrome.
We count on support services paid for by Medicaid. My support counselors help me stay active and physically fit. They help my brother and me take care of ourselves and our home, and let my parents take breaks. They give us rides and support when we work. I want independence and I need Medicaid money for counselors so I can live like everyone else.
Please make sure my Medicaid support services don’t go away. Thank you.
- Steve Sabia
Steve Sabia – Rockville, MD 20851
My name is Steve H. Sabia. I am an intern in the Project Search program at the National Institutes of Health (NIH). Each Project Search intern is working towards getting paid employment. Medicaid funds are used to pay for the job support I get at NIH through Project Search. I love working in the cafeteria in Building 31. I stock items, keep everything clean and do some food preparation. I hope the hiring freeze will be lifted at NIH so they can hire me when the program ends in June.
I also use Medicaid funding to pay for personal support staff who help me live independently in the community with my friend Eli Lewis. We have an apartment in Rockville, Maryland. I can do a lot on my own but I need some help with cooking dinner, going grocery shopping and keeping the apartment clean and safe.
Changes in Medicaid funding will prevent people like me from living good lives. Without my Medicaid waiver services, I may not be able to get a paid job, keep a job and or become more independent in my apartment. I may not even be able to stay in the apartment at all without these services. Congress can make a big impact on people with disabilities by keeping Medicaid community services funded the way they are now.
Please help me. I want to be an active member of the community and a hard-working, tax-paying citizen. Thank you.
- Eli Lewis
Eli Lewis – Rockville, MD 20851
Join me in my journey! I’m Eli Lewis – when I dream, I dream Big! I am successfully employed with the training received through Project Search. Each Project SEARCH intern is working towards a successful outcome in competitive employment in an integrated setting. This national program is about employment in an integrated setting, year-round work, 20 hours/week or more and minimum wage or higher. I hope you will learn more about it.
I have been employed at NIH since June 2014 as a supply clerk. I am part of a team that is responsible for refilling and maintaining the hand sanitizers throughout the 13 floors of the clinical center. I received training for this job through Project Search with the help of Maryland Division of Rehabilitation Services and SEEC. I travel to the movies using metro & I compete in Special Olympics Basketball & Power Lifting. I am an actor with Art Stream, an inclusive acting troupe. I am live independently with my friend Steve Sabia. I am a constituent who pays taxes in Montgomery County, MD.
As you can see, I am very active at work and in my community. My Medicaid services help me to do this. I receive Medicaid waiver services for people with developmental disabilities. My services allow me to develop job skills and living skills to live safely and be a good self-advocate. Cuts in funding for the Medicaid program will prevent people with disabilities from reaching their full potential. Without my Medicaid waiver services, I won’t grow in my job and become more independent. Congress can make a big impact on people with developmental disabilities by not cutting funding of Medicaid waiver services.
Please do not cut funding of Medicaid waiver services and help me continue to be an active and helpful member of the community that I live and work in. Thank you.
Self-advocates are speaking up to Members of Congress and their staffs to protect Medicaid, which provides critically important health, employment, home and community-based services for individuals with Down syndrome. Jamie, Steve, and Eli shared the statements they are using in speaking to Members of Congress and staff about this important topic. If you write your own statement, be sure and include your email and your home address so it will be clear you are a constituent!
- Benjamin 'Jamie' Veerhoff
- Policy Documents
ESSA State Plan Review Guide & Advocacy Tips – June 2017 (by NDSC and The Advocacy Institute)
Analysis of Draft ESSA State Plans (by NDSC and The Advocacy Institute)
Click here to get the most updated plans for each state
- Webinar Archives
Post-Election Analysis (Jan 24, 2017)
ESSA 3-Part Series ~ What You Can Do to Impact Implementation
Presented by NDSC, NDSS & DSAIA
The Every Student Succeeds Act (ESSA)
What YOU Can Do to Impact ESSA Implementation
Presented by Ricki Sabia, NDSC Senior Education Policy Advisor and Heather Sachs, NDSS Vice President of Advocacy & Public Policy on October 25, 2016
Slides – joint-ndsc-ndss-essa-overview-webinar-final
Webinar video – https://www.youtube.com/watch?v=t8C5f93A9_Y&feature=youtu.be
Strategies for Successful Public Policy Advocacy
Powerpoint – NDSC policy webinar 2015