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Statement Regarding Healthcare Legislation in the US

ASF Advocacy Statement
September 18, 2017

Statement Regarding Healthcare Legislation in the US

The Angelman Syndrome Foundation is issuing the following statement regarding healthcare legislation in the US because of its impacts on the lives of people with Angelman syndrome and their families.

Statement from Angelman Syndrome Foundation Board of Directors:

The healthcare proposals currently being debated in Congress include provisions that could have potentially devastating impacts on people with Angelman syndrome (AS) and their families. In support of people with AS and their caregivers, the Angelman Syndrome Foundation (ASF) strongly opposes any effort to cut or cap Medicaid, a program that provides vital services to children and adults with AS. Without sufficient Medicaid funding for home and community-based services, institutionalization would be the only viable option available to many of our loved ones with AS. Proposals to cut funding for school-based services funded by Medicaid and to eliminate affordable healthcare options for caregivers would have major impacts on our community as well. The Angelman community, including the ASF, is fighting for our loved ones with every tool we have. Please stand with us and contact your members of Congress to let them know why Medicaid and affordable healthcare are important to your family.

Facts:

  • Major national organizations including The Arc[1], The National Organization for Rare Disorders[2] and the National Down Syndrome Society[3] all oppose cuts and caps to Medicaid.
  • “Medicaid is the main source of funding for over 77% of the supports and services that individuals with intellectual and/or developmental disabilities (I/DD) use to live in the community.” (Source: ARC)[4]
  • “In 2017, 68 percent of school superintendents reported using Medicaid funds for school nurses, counselors, speech therapists, and other health professionals.”[5]

 


[1] http://www.huffingtonpost.com/entry/why-you-should-care-about-looming-medicaid-cuts_us_58a33332e4b0cd37efcfed80

[2]https://rarediseases.org/wp-content/uploads/2014/11/NORDs-Principles-for-Health-Coverage-Reform-Final.pdf

[3] https://www.ndss.org/About-NDSS/Newsroom/Recent-News/ndss-statement-on-bcra/

[4] https://blog.thearc.org/2017/05/11/passage-ahca-real-life-consequences-people-disabilities/

[5] https://blog.thearc.org/2017/05/11/passage-ahca-real-life-consequences-people-disabilities/