PCPID Quarterly Meeting: September 26–27, 2011

Healthcare/Medicaid

Lisa Ekman, Senior Policy Advisor, Health and Disability Advocates

Ms. Ekman stated that Medicaid is the backbone of services that allow people with ID to live independently in the community. That independence needs to be maximized through a spectrum of publicly and privately funded healthcare services and supports. Healthcare services should always include informed consent so that people with ID and their families can make decisions about their own healthcare. Getting good information to people with ID and their families is vital, as healthcare services need to be consumer-directed and based on informed choice. She added that Medicaid is very expensive for states. There is a misperception that the Affordable Care Act (ACA) will not affect people with disabilities who are eligible for Medicaid, but this only applies to those who receive SSI. In the ACA, there are risks regarding the new Medicaid expansion, what will go into exchanges and what is in the essential benefit package. The ACA created a new Medicaid eligibility group, often referred to as the adult only group, for people between the ages of 19 and 65 who make up to 133% of the poverty level for their family size. The first time a childless adult without a disability is eligible as a mandatory category, states must cover under Medicaid. The risk is that people with disabilities are being put into the new adult category and will not have access to what is required for independence. In next few weeks, the Institute of Medicine will send back a framework for essential benefits to Health and Human Services (HHS), and HHS will develop the minimum set of benefits for anyone offering a qualified health plan through the new state level exchanges. Another risk is the lack of a clear federal policy on outcomes for Medicaid investments, especially related to employment.

Opportunities available under the ACA include the Community First Choice option and Money Follows the Person. The Community First Choice is an option that states can adopt, which provides funding for people to live independently in the community. The Super Committee need to knows about the importance of Medicaid for people with disabilities, as well as the importance of federal standards and guidelines for people with disabilities in Medicaid, which protect gains in independence for people with disabilities. Dr. Spitalnik stated that the policymakers in New Jersey are looking to comprehensive waivers not only to improve care, but also to deal with shortfalls in state budgets, particularly around Medicaid. We do not know how many new people will be eligible, their service needs or what their utilization of basic healthcare will be because many have been uninsured long-term. Ann Hardiman stated that the state of New York is working on 1115 waiver for people with ID and is moving towards personalized services.