Every July, Disability Pride Month reminds us of the people who fought for the right to be included in our schools, workplaces and communities. These victories matter. More than 25 years ago, the U.S. Supreme Court issued its landmark decision in Olmstead v. L.C. The Court’s ruling affirmed a principle that people with disabilities had fought to have recognized for decades: people with disabilities belong in their communities and should not be segregated from them. It made clear that living in and contributing to the community is not a privilege but a fundamental right that cannot be taken away.
Much progress has been made in turning the principles of Olmstead into reality. Disability-informed public policies and investments in community-based services have made it possible for people with disabilities to live, work and participate in their communities. Medicaid has been central to that progress.
Medicaid is much more than health insurance for people with disabilities. Medicaid helps disabled people live vibrant, independent lives instead of being hidden away in institutions. Medicaid-funded services and supports make it possible for people with disabilities to work, go to school, raise families and be active in their communities.
Medicaid pays for assistance with bathing, dressing and eating. It pays for transportation to medical appointments, community activities and work. It helps families keep a loved one at home instead of forcing them into an institution because of a lack of in-home services. Medicaid is also a vital source of health insurance coverage for many direct support professionals who provide the services people with disabilities rely upon to remain in their communities.
This is why impending changes to the Medicaid Expansion Program, New Hampshire’s Granite Advantage Program, are alarming and deserve our attention. These changes, required under both federal and state law, will make it challenging for Granite Staters, including those with disabilities, to secure and retain health insurance.
Beginning in January, with few exceptions, people who are currently eligible for Granite Advantage will need to prove they completed 80 hours of work/community engagement per month. Recipients will need to re-establish their eligibility for the program twice a year. Currently, Granite Advantage members’ eligibility is re-determined once per year.
These changes are going to create practical and technical barriers to coverage that will likely result in thousands of New Hampshire residents losing their health insurance.
Recipients with disabilities might qualify for an exemption if they are considered “medically frail,” but the state has not finalized the criteria for determining “medical frailty.” Nor has it designed a clear, accessible and user-friendly way for people to prove they qualify for this exception. If people cannot clearly understand the criteria to qualify for an exemption, or if they struggle to secure proof from a medical provider, they risk losing their health insurance.
The new reporting requirements assume people can easily access technology and complete complicated forms, understand the ever-changing rules and that they are able to find someone to help when they have questions. However, many people with disabilities or their caretakers already face barriers doing these very things. Many struggle to find trained professionals who can help them navigate the system or provide consistent support and services. Many people enrolled in Granite Advantage care for an adult child, spouse, sibling or even a parent with a disability. Their days are full. They must manage appointments, medications, transportation, paperwork and unexpected challenges while also trying to balance their own personal, work and family life. The labor is real, time consuming and challenging.
So, this really isn’t just a conversation about Medicaid. It is about whether New Hampshire continues to move toward the promise of Olmstead or rebuilds the very barriers that we have spent decades trying to tear down. Disability Pride Month reminds us that disability is a natural part of being human; and that ensuring people with disabilities have equal opportunities to live, work and be included in our communities is worth fighting for. Inclusion also requires policies that value every person and systems that are designed to support success.
As New Hampshire implements changes to Granite Advantage, it is important for policy makers to ensure that the program works for the people it exists to serve. Information concerning the changes and new reporting requirements must be communicated in multiple formats that are accessible to people with different abilities. Our state must ensure trained staff are available to help individuals secure and submit necessary documents to gain and retain their health insurance.
We must build a system that protects access to health care and community living while recognizing the realities of disability. This is what Disability Pride means — not simply celebrating disability one month each year, but building communities where everyone has the support they need to contribute, live and belong every day of the year.
Louis Esposito is the executive director of ABLE NH. Stephanie Patrick is the executive director of Disability Rights Center-NH.