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Healthcare Reform and People with Disabilities

FISA’s executive director, Kristy Trautmann, was invited by the Pennsylvania House Democratic Policy Committee to testify about the importance of the Affordable Care Act and Medicaid on the 1.7 million PA residents with disabilities.  She believes strongly that any conversation about health policy should include the perspective of people with disabilities, their families and advocates.
Her remarks are below:
MARCH 29, 2017
My name is Kristy Trautmann and I serve as executive director of FISA Foundation, a charitable grantmaking foundation in Pittsburgh dedicated to improving the lives of women, girls and people with disabilities in a ten-county area of southwestern Pennsylvania.
Thank you for the invitation to provide testimony.  My remarks will focus on the impact of potential changes to the Affordable Care Act and Medicaid could impact the more than 1.7 million people with disabilities who live in Pennsylvania.[1]
The Disability Rights Network of Pennsylvania and numerous other advocacy groups agree that “the Affordable Care Act has been the most significant law to promote health and well-being of people with disabilities since the Americans with Disabilities Act.”
The ACA has clearly improved access to care for people with disabilities and chronic conditions and helped them live healthy and independent lives. The ACA has improved access to essential services. Before the ACA, health plans and Medicaid programs often limited necessary services for people with disabilities or simply did not cover them (for example hearing aids or speech therapy for children). Increased access to mental health and substance use treatment and broader access to prescription medications has been life altering for innumerable individuals and families.[2] Without these services, many would risk isolation, suicide, homelessness, incarceration, or premature death.  A group of grassroots activists recently started a campaign called “Without the ACA #IWillDie”[3] where they share their stories about the life saving treatments that they would otherwise not be able to afford. Each year many of the 1.5 million Americans with disabilities find themselves stuck in a required two year waiting period before they can become eligible for Medicare due to their disability, and through the marketplace and Medicaid expansion many of them now have a low-cost option for health coverage. ACA also strengthens care coordination between Medicare and Medicaid.[4]
In addition to improving healthcare and access to important services for people with disabilities, the ACA has also removed barriers to employment. Before the ACA, many people with disabilities or preexisting health conditions could not get health insurance through their employer and could not afford to purchase it individually.  Many had no healthcare options except for Medicaid and were thus forced to choose chronic unemployment[5]  or underemployment to be poor enough to be eligible for safety net services because they cannot do without prescription drugs, personal care assistance or medical equipment. Per a recent article in The American Journal of Public Health, in states that have opted into Medicaid expansion, more people with disabilities can work and earn higher wages which reduces the need for other cash benefits.[6] In addition, the provision allowing young adults to remain on their parents’ insurance until age 26 provides more time and flexibility for pursuing education and job training opportunities.
Next, I’d like to talk specifically about Medicaid. In PA, People with disabilities account for 25% of Medicaid enrollment but 50% of program spending[7] so block grants and per capita limits will disproportionately affect individuals with disabilities.
Medicaid covers services for people with the most complex needs. Nonelderly adults with disabilities on Medicaid are four times as likely to receive nursing or other health care at home, more than 2.5 times as likely to have three or more functional limitations, and more than 1.5 times as likely to have 10 or more health care visits in a year compared to people with disabilities who are privately insured.[8]
Medicaid provides long-term care services that support people with disabilities’ ability to live independently and safely in the community. These include personal and attendant care services that assist people with disabilities with the tasks necessary for daily living, such as eating, bathing, dressing, preparing meals, and going grocery shopping.  Medicaid also covers habilitative services that help people with disabilities learn independent living skills; assistive technology, such as lifts, wheelchairs, and speech-generating devices; supportive housing services that help people with disabilities obtain and retain community housing; and community-based mental health services, which help people with mental illness remain out of institutions.[9] Many of these services are unavailable through private insurance, and they are too costly for people to afford out-of-pocket.[10]
By paying for these services, Medicaid plays a key role in helping states meet their obligations under the Americans with Disabilities Act and the Supreme Court’s Olmstead decision, which require services to be provided in the community rather than institutions, whenever possible.[11]
Federal discussions to block grant Medicaid or to cap utilization rates would shift the financial burden to states. In that case, it will be up to Pennsylvania legislators to manage the budget implications, and it is likely that cost-reduction strategies will be discussed, including narrowing the list of allowable services, increasing premiums or other ways of shifting the costs to individuals or family members. However, more than half of nonelderly Medicaid adults with disabilities live below the federal poverty level, and most, nearly 85%, have incomes below 200% of poverty ($24,120/year for an individual in 2017).[12] Reductions in Medicaid coverage will weaken community-based services supports for people with disabilities, dramatically increase waiting lists, require even more support from already stretched family members, pulling some of them out of the workforce, and will force many individuals who can live in and contribute to the community back into institutional settings such as nursing homes.
Medicaid also funds services for children with disabilities in schools. Children under age 21 are required to receive Early and Periodic Screening, Diagnostic, and Treatment services, or EPSDT, which pays for screenings and treatment for medical, mental health, dental, vision, and hearing problems. Many of these services are not covered or limited under private insurance.[13] Many schools receive funding through Medicaid to provide speech therapy, hearing and vision screenings, behavioral health treatment, personal care and aide services to students with disabilities.
While my remarks have intentionally focused on the impact of health care reform on individuals with disabilities, I would be remiss if I did not mention that the ACA and Medicaid expansion have also been important in helping women be healthier and safer.  Others have offered testimony about basic health services, including family planning, contraception, and maternity care.  I would like to offer specific comments on the importance of the ACA and Medicaid to victims of domestic violence.[14]  I have worked on the issue of violence against women for nearly thirty years and know that physicians can play an important role in screening women and in supporting victims of abuse to take steps to be safer. However, it has been incredibly difficult to get physicians to ask effective screening questions. For the first time, the ACA mandated reimbursement for domestic violence screening and brief counseling as a billable service, providing a financial incentive to healthcare providers to address these issues.
Before the ACA, state insurance laws allowed[15] insurance companies to charge victims of domestic violence more for the same benefit package—or even deny them coverage outright[16] because they had experienced abuse. Prior to the ACA, only 22 states had limited protections against plans using domestic violence as a pre-existing condition. Should the law be repealed, survivors could be financially penalized for wanting to access the same benefits at the same cost as their peers.
Women are more likely than men to be covered as dependents (39% of women between the ages of 19 and 25 are covered as dependents under a parent’s or a spouse’s plan). Many victims of domestic violence have been forced to stay in abusive relationships to maintain health insurance particularly if they or a child have a disability or chronic medical issue.[17]  By providing access to more good health insurance at a reasonable cost, the Affordable Care Act removed one of the barriers keeping women trapped in violent marriages.[18]
To avoid the disastrous consequences, I have outlined, I am certain that you, your colleagues on both sides of the aisle and other elected and appointed leaders will seek every resource and idea to close the gap and allow Pennsylvania to continue to provide essential, life-saving services to people with disabilities. At some point, you may be tempted to think that philanthropy might be counted on as the safety net.  I want to provide a little context to explain why this cannot and will not work.
First, while there are more than 6500 charitable grantmaking foundations in PA, and total foundation giving is $2.7 billion, that is a small fraction of the PA budget.  Individuals contribute more than twice as much to charity, at $6.74 billion annually, also still dwarfed by government spending.[19] Philanthropy cannot replace public sector funds.  The numbers don’t work.
However, there are important ways that foundations can be good partners in strengthening access to healthcare, improving the lives of Pennsylvania’s most vulnerable citizens, and fine tune legislative solutions. Foundations can commission nonpartisan research and analysis to inform decision-making; as a neutral convener, foundations can bring together experts and community leaders to discuss problems and offer solutions; and foundations can partner with government to pilot test and evaluate model programs.[20]
Thank you.
[1] Prevalence (2015) using the American Community Survey.
[2] Excerpted from National Health Law Program factsheet: Ten Ways the Affordable Care Act Helps Older Adults and People with Disabilities.
[4] Excerpted from National Health Law Program factsheet: Ten Ways the Affordable Care Act Helps Older Adults and People with Disabilities.
[5], refers to: Effect of Medicaid Expansion on Workforce Participation for People with Disabilities. JP Hall, et al. American Journal of Public Health:
[6] Ibid
[7] Estimates of the Kaiser Commission on Medicaid and the Uninsured and Urban Institute
[8] Kaiser Family Foundation.  Medicaid Restructuring Under the American Health Care Act and Nonelderly Adults with Disabilities” March 16, 2017.
[9] Ibid.
[10] Ibid.
[11] Ibid.
[12] Kaiser Family Foundation.  Medicaid Restructuring Under the American Health Care Act and Nonelderly Adults with Disabilities” March 16, 2017.
[13] Health Services in Schools: Medicaid and Special Education Services
[14] Futures Without Violence.
[17] Futures Without Violence.
[18] Kaiser Family Foundation Fact Sheet on Women’s Health Insurance Coverage.
[19] Philanthropy Fast Facts March 2017, prepared by Grantmakers of Western Pennsylvania
[20] How Philanthropy helps build a better Southwestern Pennsylvania, prepared by Grantmakers of Western Pennsylvania

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