The Biden Campaign has released the Biden Plan for Full Participation and Equality for People with Disabilities. The plan is a good start, but fails to adequately address the institutionalization of people with disabilities. The plan places much of its emphasis on the Supreme Court’s Olmstead decision, however much has changed since that historic decision was made over two decades ago. That includes our approach to advocacy addressing the injustice of institutionalization.
Statutory language addressing this new approach was included in the Disability Integration Act (HR.555/S.117). That bipartisan, bicameral legislation has significant support in Congress and has been endorsed by every other Democratic candidate running for President. It is notable, that the Biden Plan fails to include any mention of this legislation and, instead, he promises to “…work with Congress to pass legislation ensuring adherence to the U.S. Supreme Court’s Olmstead decision.”
There are a number of ways the Biden Plan proposal, by focusing on “ensuring adherence to the U.S. Supreme Court’s Olmstead decision,” falls far short of the promise of the Disability Integration Act.
Some of the most significant problems with the Biden Plan include:
Biden’s Plan does not cover Managed Care Organizations (MCOs) and consequently would also not protect people who would be institutionalized by an MCO. The Olmstead decision is an interpretation of Title II of the Americans with Disabilities Act. It requires that Long Term Services and Supports (LTSS) provided by a state or local government be provided in the “most integrated setting”. Although an individual who is institutionalized by a state’s Medicaid program can sue under the Olmstead decision, individuals whose institutionalization is funded by an MCO have no right to sue the MCO under Olmstead. The Disability Integration Act includes MCOs as covered entities so they can be sued directly, protecting individuals who would otherwise have no protections and allowing MCOs to be held accountable for unwanted institutionalization.
Biden’s proposal fails to expand who is protected by maintaining the current Olmstead standard where an individual must be “at serious risk of institutionalization” to be protected. Right now, it can be difficult for people at risk of institutionalization to utilize Olmstead to remain in the community. Unlike the Biden proposal, the Disability Integration Act extends the protection to people who are simply “at risk of institutionalization” which expands the people who are protected and allow greater use of the law to remain in the community and fight policies that promote institutionalization.
Biden’s proposal maintains the role of the “treating professional” in determining whether an individual with an LTSS disability can be integrated in society. This is reinforced multiple times throughout the Biden Plan. Every time the Biden Plan talks about individuals with LTSS disabilities living in “the most integrated setting”, he limits that with additional language about the setting being “appropriate”. When the Olmstead decision was made, the Supreme Court gave deference to the “treating professionals” to determine whether community integration was “appropriate”. Today, we know that with the right services and supports, any person with an LTSS disability can be integrated in the community. The Disability Integration Act eliminates this barrier to community integration that is rooted in the medical model role.
The Biden Plan’s proposal also fails to address systemic discrimination which are permissible and widespread under current law, even with the Olmstead decision. Although his plan includes language suggesting he would address waiting lists, the Biden Plan is silent about states maintaining service limitations, cost caps, and inadequate rates which advance institutionalization. The Disability Integration Act would make these pro-institutionalization mechanisms illegal.
The Biden proposal also fails to address the issue of states needing to make “fundamental alterations” of their programs to ensure that people with disabilities can receive LTSS in the community rather than be forced into an institution. Right now – even with the Olmstead decision – states cannot be required to make fundamental alterations to their programs. As an example, a state’s array of community-based services may serve people with brain injury, but not provide home and community based services and supports to individuals with Multiple Sclerosis. Advocates cannot use Olmstead to require the state to expand its waiver program to serve those individuals. The Disability Integration Act does; the bill would ensure that any individual who can be institutionalized be provided services and supports in the community – even if that means the state must fundamentally alter its programs.
Biden’s Plan fails to address the problem that some tasks – like raising a child or pet care – are not medically necessary, and aren’t provided under a state’s Medicaid program. The current system bases LTSS on a medical model with services needing to be “medically necessary”. Although having a pet or raising a child are deeply rewarding experiences, neither is considered medically necessary. Additionally, some programs may allow the disabled individual to get LTSS at home but not in the community – like at their place of employment. Instead of maintaining the current limited medical model approach, the Disability Integration Act was crafted to empower people with LTSS disabilities to lead an independent life – which includes getting the supports they need to have pets, children and jobs.
Biden’s Plan is silent on ensuring that the housing provided to people with LTSS disabilities is independent of service delivery. The plan talks about providing affordable, accessible, integrated housing, but people with disabilities have fought against the tyranny of assisted living and supportive housing where the service provider controls the person’s home and life. The Disability Integration Act specifically ensures that people have the right to affordable, accessible, integrated housing that is independent of service delivery so we can control our own lives.
Biden’s Plan does not ensure that there is a vigorous process for public engagement in states doing a self-assessment or developing a transition plan to comply with Olmstead. The Supreme Court identified that states could defend themselves by having an effectively working plan, but there has never been a requirement that states utilize public participation in developing their “Olmstead Plans.” Consequently, states have had the option to limit public participation in the development of their Olmstead Plan, and without a required external review process, advocates can legally be excluded. Unlike the Biden Plan and current protections under Olmstead, the Disability Integration Act explicitly requires that public participation be included in the development of self-evaluations and transition plans.
The Biden Plan does not acknowledge or address the problems enforcing Olmstead – particularly in nursing facilities- and maintains the same limited and bottlenecked systems for enforcing our right to community integration. In fact, Biden’s plan talks about Obama-era Olmstead enforcement, stating that “The Obama-Biden Administration made enforcement of Olmstead a top priority,” but doesn’t recognize the fact that over two decades since the Supreme Court’s decision we have not significantly addressed the institutionalization of 1.3 million people with LTSS disabilities in nursing facilities – even during the eight years of the Obama administration. The Biden Plan literally never mentions nursing facilities. To address this problem, the Disability Integration Act included punitive damages as a mechanism to fund the litigation and secure private attorneys.
There are positive things in the Biden Plan. As an example, the Plan calls for making the funding for the Money Follows the Person (MFP) program permanent. There is no reason this should not have already happened. MFP was created under the first Bush administration and then reauthorized as part of the Affordable Care Act and signed into law by President Obama. Even though this program is important, it is extremely limited. It has relied on state implementation which has been inconsistent. States have created barriers to using the program and excluded some disability-led organizations from being involved in the program. It’s also very limited, at best helping transition about one-half of one percent of the institutionalized population in any given year. At this rate, even if states were not filling those beds – which they are – it would take 200 years to eliminate institutionalization.
People should not die waiting for their freedom, but they do. With COVID-19 running through institutional facilities like wildfire, the problem is finally being recognized, but we need to remind people that this problem existed long before the pandemic. It’s just that 11 disabled children dying in a New Jersey nursing facility isn’t considered news.
We do not know why the Biden Plan failed to include, or even mention, the Disability Integration Act. The omission is particularly striking when every other major Democratic candidate for President in this election publicly endorsed the bill. This was surprising and disappointing because Senator Biden was a strong supporter of ADAPT Delaware and our issue. We don’t know if he is now protecting the nursing facility industry, managed care companies, or the unions representing institutional workers, but we do know is that he is not advancing the right of people with LTSS disabilities to live in freedom and, instead of having a vision for the future, he is simply looking to the past.