NDSC has an active voice in Washington, D.C. to ensure rights of individuals with Down syndrome are protected and opportunities are made available. We focus on services and supports that touch every aspect of an individual’s life – infant and toddler services, preschool, education, employment, community living and health.
Federal laws such as the Individuals with Disabilities Education Act (IDEA), Elementary and Secondary Education Act (ESEA), Medicaid, and the Workforce Investment Act are federally funded. These are the sources of funding for virtually all disability services. Consequently, the challenges faced by individuals are impacted greatly by the federal and state funding deficits we are now facing. We need to address the issues related not only to availability but to quality services and protection of rights.
NDSC’s governmental affairs activity is determined by priorities established by the organization and, to a large extent, current Congressional activity. While we continually research and monitor all areas of relevant Congressional and Administration action, our primary focus is determined by issues and laws that are being developed and/or changed. This summary focuses on NDSC legislative priorities and activities.
The federal and states’ budgets are under great stress because of entitlement expenditures. A debate over spending and entitlement cuts looms large over the country.
These issues continue to be, and will for many years to come, be one of the most important issues facing the quality of life for individuals with Down syndrome.
Most services for adults and many for children, including health insurance are funded through direct Medicaid and Medicaid waiver programs. There are hundreds of thousands of individuals nationwide on waiting lists for community based services, many of whom are living at home with aging caregivers. Therefore, it is vitally important to continue efforts to provide adult support services to individuals with Down syndrome for the following reasons:
- Most adult community residential and employment support services are funded by the Medicaid waiver program.
- Most adults with Down syndrome, if they do not have employer-funded health insurance, receive their insurance through Medicaid.
- Private insurance does not offer long-term support services for individuals.
- Many children with Down syndrome receive important support services through state Medicaid waiver programs.
- Many children with Down syndrome receive health insurance through the Medicaid-funded State Children’s Health Insurance Program (S-CHIP).
- States are implementing measures to cut Medicaid spending throughout the states, many through the use of managed care. Managed care organizations generally are health oriented and unfamiliar dealing with the issues related to funding long-term support services.
- Expand opportunities for direct consumer/family control over their own funding through individual budgets with fiscal intermediaries embraced by state and federal government.
- Continue efforts to shift the institutional bias in Medicaid to community supports and services.
- Eliminate waiting lists for community based services.
- Ensure that programs are not cut in a way that diminishes services for individuals with Down syndrome and other disabilities.
One of the few mandated services for individuals with disabilities is education. In addition to special education services for students ages 5-21, the Individuals with Disabilities Education Act (IDEA) also includes provisions for Infant and Toddler and preschool services. There are also explicit provisions in IDEA that address transition services from school to work/post-secondary opportunities.
Another issue that has received a great deal of attention in the past year is the increase of abusive practices against students in schools including the use of restraint and seclusion. Reports continue in the media that portray the abuse that continues against students with disabilities.
Additionally, in the past few years, disability advocates have been involved in efforts around No Child Left Behind (NCLB). This law, at one time, promised high quality education for all students and that teachers and leaders would be better prepared to meet the needs of diverse learners through a high quality curriculum. However, the Administration has allowed states to waive provisions of this law to the detriment, many claim of students with disabilities.
We have identified six issues that are barriers to implementing quality education laws.
- Most schools avoid being held accountable for lack of appropriate progress for students with disabilities.
- Curriculum for students with disabilities often is not based on high expectations and an attitude that students can progress with an academic curriculum.
- Use of abusive practices against students is being reported with more frequency and reflects widespread use of these practices.
- It’s increasingly difficult for parents to recover attorney’s fees and expert witness fees that makes the legal remedy, as promised by law, unaffordable for many families.
- More and more, parents must prove that their child is not receiving adequate education services instead of schools needing to prove that services are adequate. Lack of time, money and energy are obstacles that families face as they advocate to provide quality education for their children.
- Parents are often intimidated when schools use the “mandatory resolution session” and this delays the right to due process.
Therefore, the following priorities have been identified consistent with the barriers identified and potential Congressional opportunities.
- Promote high quality instruction and access to the regular curriculum and ensure accountability measures are available for students and teachers.
- Promote efforts to ban the use of restraint and seclusion.
- Promote state and federal efforts to shift the burden of proof in IDEA cases to the school district instead of parents.
- Promote bills which would enable parents to recover expert fees and costs when they are the prevailing party in litigation against the school district.
Current federal employment programs offer few opportunities for individuals with significant disabilities. The Workforce Investment Act (WIA) and the Rehabilitation Act (VR) are the primary sources of funding for employment services for individuals with disabilities and are currently due for reauthorization. This program is not designed to provide ongoing support to help individuals get and keep meaningful employment.
- Federal funding is biased toward providing services to individuals in day programs or sheltered workshops as opposed to community employment.
- Funding for supported employment programs has been curtailed in the past several years.
- Long waiting lists exist to receive services.
- Schools are not including transition services in student’s Individual Education Program (IEP) as mandated by law.
- Support services such as job coaches are only available through very limited VR funding for a short period of time.
- Promote inclusion of quality transition services including work internships, real jobs and other employment services for students who are eligible for IDEA transition services.
- Promote integrated employment opportunities at minimum wage or better.
- Promote entrepreneurial opportunities for individuals with significant disabilities.
- Support various coalitions “employment first” activities to improve opportunities for individuals with disabilities.
Other Legislative Efforts
Most adults with disabilities, even if they are working part-time receive public benefits through the Social Security, primarily SSI, health insurance and long-term support services through the Medicaid program. Individuals receiving public benefits lose eligibility for benefits and services if they hold more than $2000 in assets in their name.
Currently, families and individuals with disabilities may protect assets through the use of various savings vehicles. The special needs trust, another tool available to people with disabilities, enables an individual to have funding set aside in excess of $2000.
NDSC and other disability advocates continue to push for passage of the Achieving a Better Life Experience (ABLE) that would allow individuals with disabilities to have a savings account similar to a special needs trust with funds restricted to the use for disability related expenses.
- Promote passage of the ABLE bill.
- Promote use of person-centered planning when preparing for the future of children and adults with disabilities.
- Promote appropriate use of a variety estate planning vehicles.
According to the Trisomy 21 Research Resource Act of 2011, “Individuals with Down syndrome are more susceptible to diseases including Alzheimer’s disease, leukemia, congenital heart disease, seizures, and diabetes. However, people with Down syndrome may be protected from other common diseases including atherosclerosis, hypertension, and solid tumors such as brain, gastrointestinal, and breast tumors. Therefore, the study of Down syndrome may lead to novel treatments of common diseases that affect millions of Americans.”
Despite the benefits to individuals with Down syndrome and the population at large, federal funding for Down syndrome research has lagged that of other disabling conditions in recent years. Therefore, NDSC supports efforts of various Down syndrome organizations to advocate for an increase in federal funding in this area and reach funding parity with other disabling conditions.
NDSC supports research activities that promote improved quality of life for individuals with Down syndrome and their families and/or have research objectives consistent with those contained in the Trisomy 21 Research Resource Act of 2011. We also support efforts that promote inclusion of Down syndrome in Alzheimer’s research.
• Support efforts to pass the Trisomy 21 Research Resource Act of 2011
• Support efforts to pass the Trisomy 21 Research Centers of Excellence Act of 2011
• Support efforts to reach parity in federal government funding with other disabling conditions.
• Support efforts to include Down syndrome in Alzheimer’s research.