Advocacy Letter:

July 12, 2016

Senator Mark Kirk
John C. Kluczynski Federal Building
230 S Dearborn St #3900
Chicago, IL 60604
RE: AMENDMENT, Social Security Act, Special Laws for Special Needs
Dear Senator Mark Kirk,
The members of your Illinois constituency respectfully ask that you support the
amendment to 42 U.S. Code Chapter 7, Social Security Act(SSA) to provide a federal
waiver option to alleviate States current funding crises, prevalent in current
programs designed to help children who are medically fragile and dependent. These
children reliant on a life-sustaining technology (ventilator-dependence,
tracheostomy-dependent and/or gastronomy-dependent) that are otherwise at risk
for institutionalization but can be cared for safely at home through current stratified
HCBS (home and community based) waivers with matching state and federal
dollars.
Subchapter XVIIIHealth Insurance for the Aged and Disabled, administered by the
Centers for Medicare and Medicaid Services (United States Code, 1395-1395ccc,
subchapter XVIII, chapter 7, Title 42) allows for hospital insurance benefits for the
aged and disabled. The implementation of law to create Special Laws for Special
Needs, a federal initiative to control the states expenses toward private duty
nursing benefits and equipment needs of the medically fragile participants whom
are disabled children and young adults as an alternative to long-term
institutionalism would provide cost-saving measures toward this growing population
of Medicare and Medicaid dependent persons with disabilities.
This bill allows programs to be deployed and developed which will support children
with specialized healthcare needs (CSHCN) that are medically fragile with aspects of
the ACA (Affordable Care Act), Title II of the American with Disabilities Act (ADA),
The Rehabilitation Act, 29 U.S.C. Sec. 794, and SSA, across levels of socio-economic
status.
Your backing of Special Laws for Special Needs in form of the establishment of an
amendment to the Subchapter XVII of the SSA, regarding policy concerning CSHCN,
that are dependent on technology would ensure measures of best practices which
would alleviate excess costs, eliminate unnecessary long-term hospitalization,
expand insurance benefit availability, and provide rehabilitative opportunities.
Further linking families with better outcomes to support a medical plan of care at
home is dedication to control federal costs that are associated with current highcost Medicaid support services provided to individual States.
We truly attribute your thoughtful review of this action to be willful of the majority
support for this matter.

Sincerely,
Katrina Moore

References:
Mooney, C. & Van Dyke-Brown, B. 2003. Lobbying Illinois. Phillip Brothers Printing.
Springfield, IL.
Compilation of the Social Security Laws. N.d. Social Security Administration.
Retrieved on July 19, 2016 at https://www.ssa.gov/OP_Home/ssact/title18/1800.htm.