Health Policy Landscape for People with Developmental Disabilities

This is Claudia Center.

As Clarissa said, I'm a legal director at DREDF, Disability Rights Education and Defense Fund.

And we are a disability-led organization with large majorities of our staff and board being people with disabilities and also parents of children with disabilities.

I'm here to talk a little bit about the health policy landscape for people with intellectual and developmental disabilities.

At DREDF and at prior jobs, I've represented many people with developmental disabilities, in part because the legal services system in California automatically qualifies people with developmental disabilities for legal services.

And I hope that that's true in other states as well.

I should have done a trigger warning here, but a lot of the federal policy is pretty dark.

We all are going to work together and fight for good policy for people with developmental disabilities and all kinds of disabilities, but it's not a bright time in health policy.

So my friend and colleague Maria Town of AAPD is going to talk in more depth about what's going on with Medicaid, but I'm sure you all heard that there will be massive and there are massive cuts to Medicaid from the federal bill, H.R. 1, with new requirements designed to shrink the people who are eligible for the expansion population, in other words, people who get Medicaid because of expansion.

So that's based on income rather than disability.

And so I just want to flag that that will affect people with developmental disabilities, but most adults with IDD qualify for Medicaid based on disability, so not subject to the new requirements.

um but it is something to watch out for um and what we are advocating to our states who have to imp that have to implement these requirements is that there's an exemption to the work requirements for medically frail quote unquote or has special medical needs quote unquote and we're wanting those states to apply those very broadly to exempt for example, people who are getting in California services from the regional center.

And that's not because we don't think people with developmental disabilities should participate in work.

It's because these requirements have been shown to eliminate people from health insurance coverage and not to promote, you know, employment.

So, and Maria will speak more about this.

We also, of course, if you've been reading the news, which is probably not a healthy activity these days, there have been massive staff cuts at HHS, the Department of Health and Human Services, which is the agency which implements federal health policy.

So about 18% of the workforce has been cut, including a large number of staff, over 1,000 from the Centers for Medicare and Medicaid Services.

and and that's the agency which handles things like waivers or benchmark plans like very important things about how health care is delivered the administration for community living which is the federal center for policy on aging and disability obviously critical to us here has been slashed by about half and the office for civil rights has also had staff cuts And so this is a very challenging situation, and we have to work together even more, you know, lawyers, doctors, healthcare providers, because we have to reach solutions, at least for right now, outside of any help from the federal HHS.

We have several challenges to Olmstead, and Olmstead is the case by the Supreme Court that talked about something we call the integration mandate.

And this is the idea that people with disabilities, including developmental disabilities, have the right to live in the community with supports like in-home support care or supported employment or whatever it is, home and community-based services, if they want to, and they can do that.

If people are forced into institutions to receive needed care, That's a violation of disability rights because those services can be provided in the community successfully and people can live in the community with supports.

So we have nine states right now who have brought a case against the federal government.

claiming that some new rules that clarified and detailed the integration mandate are unconstitutional.

They're basically saying they shouldn't have an obligation to provide services in the community unless the person seeking services is already in the institution.

So it's really terrible.