Advocates are bracing themselves for a rollback of community-based supports provided to individuals with disabilities. Regardless of your political affiliation, there are currently a number of challenges facing advocates of persons with disabilities in Washington, with several bills and policy changes that threaten the future of persons with disabilities and their families. The purpose of this article is to call attention to proposed legislation that could have long-term negative impact on the delivery of services. While families are struggling to survive, they may not have heard of some of the less-known attacks on our lifeline to services. Knowledge is power and the more informed we are of legislation and regulations being proposed, the more effective we can be in blocking attempts to tear down years of hard-fought gains in the field of special education, health care, community supports, nutrition and housing programs. It is critical that families advocate for themselves by letting their elected officials know how these cuts to services affect their lives.
The attention given to the repeal of the ACA has overshadowed other legislation the GOP has introduced that will harm families of persons with disabilities. Since the early ‘70s we have gradually increased the help persons with disabilities and their families have received from the federal government. We made progress chipping away at the institutional bias in federal programs and expanded supports to those families who wanted to keep their special-needs children at home and live more ‘normal’ lives within the community. The progress from 1970 to 2016 has been slow but steady. For the first time in this author’s 50 years as an advocate, I fear the loss of many of the gains we have made and a slipping back in help families can expect to receive from the federal government. Under a GOP-controlled House, Senate and White House, we see the introduction of legislation that appears to target families for discrimination and roll back funding for education, housing assistance programs, nutrition programs and Medicaid.
The press has focused on the GOP proposal to repeal the Affordable Care Act (aka Obamacare) and replace it with the American Health Care Act (aka Trumpcare). The Arc and other advocacy groups claim that Trumpcare will cause thousands of low-income individuals to lose their eligibility for Medicaid and will change Medicaid from an entitlement benefit to a program with long waiting lists, copays and a limited number of services covered. If the American Health Care Act passes, it will change Medicaid as we know it. This legislation proposes a dramatic change in funding, from assisting states in paying for the actual cost of providing Medicaid services to a “Per Cap” formula. The “Per Cap” reimbursement will completely undermine the Medicaid program and transfer the burden of providing adequate health services and community-based support services to the states and eventually to the individuals who need these services through possible copays or loss of eligibility.
Until now, Medicaid has been an entitlement benefit funded with matching state and federal funds. If a person meets the financial and program criteria, he received the services, and the cost of providing those services was split between the state and federal governments. Under a Medicaid cap funding formula, the federal government sets a limit on how much it reimburses the state for each person served. Rather than pay a percentage of the actual costs, it would pay a fixed amount, and if the actual cost of care is higher than that, the state will have to make up the difference or in the alternative, drop or decrease services. This has a disproportionately negative impact on the elderly and the disabled, who are more expensive to care for than are typically healthier persons. Families who rely on Medicaid should anticipate the likelihood of waiting lists and a decrease in services. Nicole Jorwic, at the Arc, says “Let there be no doubt about it - caps mean cuts. This will lead to cuts in services and longer waiting lists.” We are at risk of losing home- and community- based services, coverage for mental health services, personal care assistance, rehabilitative services, prescription drug assistance, respite care and other benefits if Trumpcare is passed and replaces the ACA.
It is too soon to know what cuts await SSI, SSDI, Medicare, the Supplemental Nutrition Assistance Program (SNAP, aka food stamps), Fuel Assistance, Section 8 and other HUD housing programs that enable persons with disabilities to afford to live in the community.
It is important that families partner with the Arc and other disability groups to educate our legislators as to the important role Medicaid and other benefits play in our lives and the lives of our children. If we do not take a strong stand to fend off proposed cuts to services, it may be too late for an entire generation of persons with disabilities. Nicole Jorwick from the Arc says, “It is very important for advocates to speak up and tell their stories.” Now is the time for action.