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Independent Living News & Policy from the National Council on Independent Living

Information Alert: HCBS and Medicaid Waivers

Some States are requesting the Centers for Medicare & Medicaid Services (CMS) to approve new Medicaid Waivers and/or amend existing Medicaid Waivers that potentially undercut (1) the Supreme Court’s Olmstead decision; (2) the federal regulation’s “most integrated setting” mandate, and (3) the DOJ’s Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C.

The following information is intended to help disability advocates fight Medicaid Home and Community Based changes that States might seek, via a Medicaid Waiver, which will harm people with disabilities.

First, the Medicaid federal regulations, 42 C.F.R. § 304(f), requires notice of waiver changes:

“(f) The [State] agency must establish and use a public input process, for any changes in the services or operations of the waiver.

(1) This process must be described fully in the State’s waiver application and be sufficient in light of the scope of the changes proposed, to ensure meaningful opportunities for input for individuals served, or eligible to be served, in the waiver.

(2) This process must be completed at a minimum of 30 days prior to implementation of the proposed change or submission of the proposed change to CMS, whichever comes first.

(3) This process must be used for both existing waivers that have substantive changes proposed, either through the renewal or the amendment process, and new waivers.”

Second, the ADA federal regulations require that all services and programs, which include Medicaid Waivers, be provided “in the most integrated setting.” The U.S. Supreme Court in the Olmstead decision relied on this regulation and that decision is still good law. This is a very strong handle. 

Third, in the DOJ “Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C.,” DOJ wrote:

“To comply with the ADA’s integration mandate, public entities must reasonably modify their policies, procedures or practices when necessary to avoid discrimination. The obligation to make reasonable modifications may be excused only where the public entity demonstrates that the requested modifications would “fundamentally alter” its service system.

“The ADA’s integration mandate is implicated where a public entity administers its programs in a manner that results in unjustified segregation of persons with disabilities. More specifically, a public entity may violate the ADA’s integration mandate when it: (1) directly or indirectly operates facilities and or/programs that segregate individuals with disabilities; (2) finances the segregation of individuals with disabilities in private facilities; and/or (3) through its planning, service system design, funding choices, or service implementation practices, promotes or relies upon the segregation of individuals with disabilities in private facilities or programs.

“The ADA’s integration mandate does not require a showing of facial discrimination. In the Olmstead context, an individual is not required to prove facial discrimination. In Olmstead, the court held that the plaintiffs could make out a case under the integration mandate even if they could not prove “but for” their disability, they would have received the community-based services they sought. It was enough that the state currently provided them services in an institutional setting that was not the most integrated setting appropriate. Additionally, an Olmstead claim is distinct from a claim of disparate treatment or disparate impact and accordingly does not require proof of those forms of discrimination.

“The ADA and the Olmstead decision extend to persons at serious risk of institutionalization or segregation and are not limited to individuals currently in institutional or other segregated settings. Individuals need not wait until the harm of institutionalization or segregation occurs or is imminent. For example, a plaintiff could show sufficient risk of institutionalization to make out an Olmstead violation if a public entity’s failure to provide community services or its cut to such services will likely cause a decline in health, safety, or welfare that would lead to the individual’s eventual placement in an institution.

“The ADA and Olmstead require states to provide additional services, or services to additional individuals, than are provided for in their Medicaid programs. A state’s obligations under the ADA are independent from the requirements of the Medicaid program. Providing services beyond what a state currently provides under Medicaid may not cause a fundamental alteration, and the ADA may require states to provide those services, under certain circumstances. For example, the fact that a state is permitted to “cap” the number of individuals it serves in a particular waiver program under the Medicaid Act does not exempt the state from serving additional people in the community to comply with the ADA or other laws.

“The ADA and Olmstead require a public entity to provide services in the community to persons with disabilities when it would otherwise provide such services in institutions. Public entities cannot avoid their obligations under the ADA and Olmstead by characterizing as a “new service” services that they currently offer only in institutional settings. The ADA regulations make clear that where a public entity operates a program or provides a service, it cannot discriminate against individuals with disabilities in the provision of those services. Once public entities choose to provide certain services, they must do so in a nondiscriminatory fashion.

“Budget cuts can violate the ADA and Olmstead when significant funding cuts to community services create a risk of institutionalization or segregation. The most obvious example of such a risk is where budget cuts require the elimination or reduction of community services specifically designed for individuals who would be institutionalized without such services. In making such budget cuts, public entities have a duty to take all reasonable steps to avoid placing individuals at risk of institutionalization. For example, public entities may be required to make exceptions to the service reductions or to provide alternative services to individuals who would be forced into institutions as a result of the cuts. If providing alternative services, public entities must ensure that those services are actually available and that individuals can actually secure them to avoid institutionalization.”

Use these handles to fight to keep people with disabilities in the community!


  1. Valerie venezia-ricciardi says:

    I am a montgomery county, pennsylvanian who has been denied so many services and programs during the worst time of my mental illnesses which because of the lack of being helped, when these programs knew of how bad i was getting, it led me i to many hospitals and institutions and jails and led me to give up rights to my 9 year old son. Ive been homeless for over a year and in this year i have been in 302’d twice, 303’d once, in jail for 34 days in berks county, pa, and denied so many services due to lack of funding and just plain ignorance. Ive reached out to so many advocacy services in my county who advocate nothing for me and ive just plain had it up to here. My family is a family of 3 and we all have lifelong mental illness left untreated due to treatment programs not living up to their missions statements and my husband and i are now living in an overpriced motel in blue bell. My family had been discriminated so many times but really traumatizing twice by two non profits in montgomery county, interfaith of housing alliance in ambler pa and montgomery county habitat for humanity and HUD and PHRC has done nothing to help my family and one of those complaints we put in over a year ago. And they both are connected in their discrimination and harassment and retaliation that led my family homeless and broken apart and very traumatized. No law enforcement or government official that i have reached out to has helped us or even cared. Not even the DOJ or the Dept of Human Services. Nor the Disability Rights network of pa or the equality housing center used to be the southeastern rights of pa or something. I forget their name. The dept of state didnt help us or none of the state reps that i reached out to in ambler and bridgeport nor the ambler police. I ended up in a year long psychosis where i was hearing voices and having delusions and major paranoia and led me into a really bad car chase from the police in which i crashed intoba pole and the officer had a gun to my head for 20 min while my car was on fire until the ambulance showed up. And now im getting a dui for a prescribed adhd med. My number is 267-905-9280 if anyone wants to help cus lawyers dont care either nor does the arc of pa or the aclu.

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