Special Laws for Special Needs,

a federal reform initiative

To Prevent Institutionalism of Medically Fragile

Children and Young adults
(CSHCN - Children with Special Healthcare Needs)
Change in Medicaid/Medicare Law to Amend the Social Security Act
Issue:
Exists are various reasons why a child or young adult may be deemed as a CSHCN (Child with Special
Healthcare Need). Currently, each state operates a number of Medicaid home and communitybased services (HCBS) waiver, under the authority of 1915(c) of the Social Security Act (SSA) which
propose a complex web of stratified and often perplexing solutions if you are a parent of a CSHCN
who also has a medical disability which requires a life-sustaining intervention or otherwise deemed
medically fragile and technology dependent.
Proposed Action:
Amend section 42 U.S. Code Chapter 7 of the SSA follows:
SUBCHAPTER - SPECIAL LAWS FOR SPECIAL NEEDS
Allow special benefits for those who are at an institutional level of care to be afforded a private
duty skilled nursing benefit from federal benefits, or a mandate to private health insurance policies
to extend this insurance benefit, to fully support state Medicaid costs of skilled nursing to keep the
children and young adults safe at home.
Rationale:
"Waivers are optional programs, so the state is not required to offer them". States are engaged in
high cost litigations concerning the care for CSHCN that are medically fragile but stable at home
due to lack of funding for neccessary nursing care as uncompliant with 42 U.S.C. 1396d(r)(5). "An
amendement to the SSA would comply with the dedication to in-home support as a cost savings
measure and support advances and opportunities to those with permanent disabilities as stated in
legal decisions, including the Americans with Disabilities Act, the Supreme Court action of
Olmstead vs. L.C.(1999), and the Affordable Care Act, which support the right of citizens to be
cared for at home and not in institutions". Source: MFTD Waiver. N.d. Save the MFTD Waiver.
Retrieved on July 20, 2016 at www.savemftdwaiver.com
PLEASE SUPPORT AN AMENDMENT of TITLE 42 of the SSA SUPPORTING SPECIAL LAWS FOR
SPECIAL NEEDS.