An Open Letter to the Biden Administration and Congress about Ensuring the Freedom of Individuals with Disabilities

American Disabled for Attendant Programs Today – ADAPT – was founded by the Reverend Wade Blank, Michael Smith and other young people who escaped a Denver nursing facility with his assistance.  From its inception, our group has fought for the freedom and integration of people with disabilities.  The last three decades of our work were devoted to ending unwanted institutionalization.  During that time, we have learned that the institutional bias is not based in a single line of the Medicaid statute.  Instead, it is a myriad of seemingly innocuous, but ableist policies that – together – have forced countless Disabled individuals into unwanted institutionalization.

For the last two Congresses, we have worked to pass the Disability Integration Act (DIA).  DIA is a civil rights bill, modeled on the Americans with Disabilities Act, that would ensure individuals with disabilities who could be institutionalized are afforded the opportunity to receive Long Term Services and Supports (LTSS) in the community.  The bill was crafted by Disabled individuals working with Senator Schumer.  When the 116th Congress ended, the bill had 238 cosponsors in the House and 38 cosponsors in the Senate.  The bill had clear bipartisan support with 20 Republicans cosponsoring the bill.

Earlier this year, several members of Congress released language for the HCBS Access Act (HCBSAA).  HCBSAA would establish HCBS as a mandatory Medicaid service and fund these services entirely by the federal government.  It addresses the long-standing bias in the Medicaid program where nursing facilities and institutionalization are considered a mandatory service and community-based services are optional.

The first purpose listed in the bill is “to fulfill the purposes of Americans with Disabilities Act to ensure people with disabilities and older adults live in the most integrated setting”.  We applaud Congress and the Biden Administration for taking steps to address this critical issue with an expansion of the Medicaid program.  We believe that a more robust version of the bill language should be incorporated into the Biden administration’s infrastructure bill and – in doing so – lay the groundwork for the Disability Community to secure passage of the Disability Integration Act and ensure that all people with LTSS disabilities can live in freedom.

The Disability Community has been asked to comment on the proposed language of the HCBSAA.  To effectively comment on the HCBSAA language and identify how the HCBSAA can be strengthened, ADAPT is analyzing how both bills address the various ways Disabled individuals are forced into unwanted institutionalization.

1.    States and managed care companies establish eligibility criteria and other policies that prevent people with LTSS disabilities from qualifying for community-based services because of the type of disability they have, their age, or the age they became disabled. 

States have created a patchwork of systems that leave eligibility gaps, forcing individuals into institutional settings.  In addressing budget shortfalls, states have even established policies that allow an individual to be institutionalized while being ineligible for services and supports in the community.  In one of the most insidious policies, an individual who requests an assessment for community-based services and is found to no longer meet the level of care, is notified that they will be evicted from the nursing facility.  This has prevented individuals who could return to community-living from even asking to be assessed.  

Additionally, some individuals who have been institutionalized and no longer meet level of care eligibility requirements may, in fact, be “service dependent” because they have lived in a setting which performed all of these tasks for them so they lack the independent living skills needed meet their own needs.  Such policies prevent such individuals from being supported in transitioning to the community even though they could do so with time-limited support.

DIA makes such discriminatory eligibility criteria illegal and gives individuals with LTSS disabilities the right to take legal action to get the services they need.  The language does not just require states to address the gaps in their patchwork of systems, it requires that every individual in an institution – or at risk of institutionalization – be provided community-based LTSS if desired.  

HCBSAA creates new national Medicaid eligibility standards for Medicaid HCBS so that any disabled Medicaid recipient who needs assistance with 2 or more Activities of Daily Living (ADLs) or 2 or more Instrumental Activities of Daily Living (IADLs) for 90 days or more is eligible for HCBS; the proposed bill does not impact private insurance policies that may continue to use discriminatory eligibility criteria.

2.    States and managed care companies establish policies that limit the availability of community-based long term services and supports for individuals with LTSS disabilities such as service or cost caps which prevent people with the most significant disabilities from living in the community.

Both states and managed care companies implement service or cost caps – either formally or informally – which force people with the most significant disabilities into nursing facilities and other institutions.  This may be acceptable from a budgetary perspective or under an insurance model which prioritizes cost-effectiveness of services, but is ableist and discriminatory.  

In some cases, states have created exceptions to cost caps that include being employed or enrolled in higher education.  Such policies – which suggest that the freedom of some Disabled people is “more valuable” than others – are fundamentally ableist and discriminatory.

It is also notable that today’s Disability Rights Movement lacks leaders who use ventilators even though the IL movement was started by Ed Roberts and others who did.  This has been noted by leadership in the global IL movement and is because such individuals – unless they are wealthy – often rely on systems that, more likely than not, force them into institutions because they are considered “too costly” to serve in the community.

DIA makes such discriminatory eligibility criteria illegal and gives individuals with LTSS disabilities the right to take legal action to get the services they need.

HCBSAA is silent about service authorizations.  This is a serious weakness in the HCBSAA bill language.  The bill attempts to address the issue by establishing full federal payment for such services, but states would still be allowed to utilize cost or service caps to limit services to individuals with the most significant disabilities.  The bill also does not explicitly prevent the implementation of such caps at the federal level.  Across the country, we have seen managed care companies that oversee availability of community-based LTSS implement such caps either formally or informally even when the state tells advocates the capitation model supports people with the most significant disabilities.  The proposed bill does not address that.  Nor does HCBSAA address the fact that some providers refuse to serve or may terminate services for individuals with the most significant disabilities.  Finally, it does not impact private insurance policies that may continue to use discriminatory eligibility criteria.

3.    States and managed care companies do not provide a specific community-based long term services and supports needed by an individual with an LTSS disability and individual providers may refuse to provide specific services even when such services are authorized.

Even if an individual is eligible to receive LTSS in the community, they do not have the opportunity to live in freedom if the specific service or support they need is not provided to them.  The most notable example is the lack of support with “safety monitoring” for people with certain types of disabilities.  Individuals who may need this support may be determined to be “unsafe” in the community and have their freedom taken through guardianship while remaining ineligible for any support to avoid unwanted institutionalization.   

Services and supports are also frequently limited to providing assistance with “medically necessary” tasks so an individual may be able to leave an institution but still be denied choices which would be afforded to them if they were not as significantly disabled.  For example, even though raising children and having pets are an important part of life for most people, most Medicaid programs do not consider “care of others” to be an instrumental activity of daily living and do not provide assistance which would allow disabled individuals to parent and have pets.

Additionally, although there is a focus on “medically necessary” tasks, often people have difficulty getting assistance with health-related tasks – non-acute tasks, typically regulated by States as medical or nursing tasks, that an individual with a disability may require to live in the community, including administration of medication, assistance with use, operation, and maintenance of a ventilator, and maintenance and use of a gastrostomy tube, a catheter, or a stable ostomy.  Because many states require nurses to do such tasks they may not be available or provided to individuals who need such assistance which forces them into an institution.

Although a service may be paid for in a State Medicaid program, individual providers may limit it or choose not to provide it.  As an example, although feeding is clearly included in a New York State’s personal care program, individual HCBS providers in that state notified their clients that they would no longer provide such assistance unless it was “hand-over-hand”.  This meant that some people were told they would no longer get assistance to eat!

Finally, although some services are necessary for an individual to live in freedom, they may not be “traditional” services provided by HCBS.  For example, a Deaf-Blind individual may be institutionalized and have the opportunity to get personal care in their home, but not receive Support Service Provider assistance.

DIA makes the failure to provide these services illegal and gives individuals with LTSS disabilities the right to take legal action to get the services they need. It embraces the social model of disability and ensures that individuals with LTSS disabilities are able to receive services and supports to lead an independent life in the community and fully participate in society.  

The bill specifically defines Instrumental Activities of Daily Living (IADL) to include “care of others” which would allow disabled individuals to receive support with parenting and pets and requires that states provide assistance with health-related tasks.  Because health-related tasks are regulated at the state level, states have the option to meet the requirements of DIA by modifying their rules to expand who can provide such assistance or by paying nurses to perform the tasks.

HCBSAA defines a broad-based set of services which include the services currently provided under HCBS waivers and other Medicaid programs.  The bill would establish an advisory panel which would update the services provided under this federal benefit at least every 10 years.  Although this provision is intended to ensure that a range of services is provided under HCBS, it would also establish a specific list of authorized services and an individual who needs a service that is not included in the list would be unable to secure the support they need to be independent.  Nothing in the bill language would prevent a subsequent panel – or administration – from eliminating services.

HCBSAA is silent on the framework for providing HCBS but describes individuals as having a functional impairment which is consistent with the medical necessity model in the provision of HCBS. The proposed bill language uses a more restrictive definition of Activities of Daily Living (ADL) than DIA, limiting ADLs to six specific tasks which do not include grooming or any other related tasks.

Even more concerning is that HCBSAA does not include any direct reference to health-related tasks.  Although assistance with health-related services are included as part of the Community First Choice Option, that language has been interpreted to mean that a state only need provide some type of assistance with health-related tasks – specifically for tasks that can be assigned or delegated – instead of ensuring that assistance with all health-related tasks is provided.  That means anyone who would need help with a non-acute health-related tasks regulated by states as medical or nursing tasks to live in the community won’t be eligible for those services under HCBSAA.

HCBSAA would allow HCBS providers to continue to establish their own rules limiting or refusing to provide assistance with certain tasks even though such support would be “available” as part of the HCBS package of services.  HCBSAA also does not include “care of others” as an IADL, precluding assistance with caring for children or pets from being provided under HCBSAA.  And finally, it does not impact private insurance policies that may continue to limit available services.

4.    States establish policies that interfere with the ability of an individual with an LTSS disability to fully and meaningfully participate in community life, including requirements that they receive services and supports, such as day or employment services, in a congregate or disability-specific setting. 

States and managed care organizations often implement such policies to minimize the amount spent on individuals by clustering them together in a “community-based” congregate setting.  Such settings allow a smaller number of staff to provide assistance to a larger group of people, but limits the ability of these individuals to make their own choices about their daily life.  Although the individuals would ostensibly be served “in the community” such approaches to providing HCBS prevent them from being fully integrated in society and leading an independent life.

Other policies may also prevent an individual from being integrated in society and leading an independent life.  For years, people with LTSS disabilities have complained that certain policies turn their homes into quasi-institutions.  One such policy, requiring the use of Electronic Visit Verification (EVV), was built on a traditional home care model which assumed the Disabled individual never left their home.  Aside from the direct impact that EVV has on the individual receiving services, it has also undermined their ability to get and keep workers.  Attendants and home care workers – predominantly people of color – have left their jobs because EVV is built on the racist assumption that they are committing fraud and they do not want to be tracked by the government.

DIA makes such policies or practices illegal and gives individuals with LTSS disabilities the right to take legal action.  

HCBSAA is silent on this issue.  States, managed care companies or providers could continue to require individuals to receive services in a congregate setting or implement other policies and practices which restrict the freedom of individuals with LTSS disabilities who would not have any legal recourse to address this injustice.

5.    States, managed care organizations and providers establish policies and processes that delay or restrict access to services, including waiting lists. 

Currently, states can restrict access to services by limiting the number of people who are served on an HCBS waiver.  When the waiver slots are filled, individuals are placed on a waiting list to receive services.  States or managed care organizations can also establish other policies or processes which delay or restrict access to services.  For example, the enrollment process may require a Disabled person to go through an elaborate or complicated procedure in order to access services.  At its worst, steps in the process are controlled by the entity restricting access to services so a managed care organization that does not want to enroll a significantly disabled individual who is costly to serve may simply refuse to return phone calls or delay doing a required home visit.  Providers do the same thing when they do not want to serve an individual.

DIA makes such discriminatory policies illegal and gives individuals with LTSS disabilities the right to take legal action to get the services they need.

HCBSAA makes HCBS an entitlement, but does not provide a mechanism for individuals to secure these services if they are not provided and does not address other policies or practices which states, managed care organizations and providers use to restrict access to services.

6.    States and managed care companies establish rates that are too low to attract quality attendants.

Having an authorization to receive hours of service is useless if you cannot get those hours filled.  Inadequate pay rates can be established by individual providers, but more frequently the problem is that the overall rate – established by the state or manage care company – is too low to support reasonable recruitment.  In some cases, because state rates are too low, providers may not be willing to serve additional people.  There is little to no recourse for inadequate rates.  In Armstrong vs. Exceptional Child Center, several providers sued the state of Idaho after officials failed to increase Medicaid payments as required under a formula approved by the federal government. An appellate court upheld a judgment in favor of the providers, noting that Idaho had conceded that it held rates flat since 2006 for “purely budgetary reasons.” However, in 2015 the Supreme Court ruled in favor of the state of Idaho on this matter and decided that providers have no legal recourse to sue over low rates.  

DIA makes rates that are too low to recruit quality workers illegal and gives individuals with LTSS disabilities the right to take legal action to get the services they need.

HCBSAA appears to be silent on this issue – based on a review of the language made available to the Disability Community – and current law addressing rates would continue.  It is our understanding that an unreleased section of the proposed bill may address the issue of wages through the unionization of home care workers.  It is impossible to comment on this language when it hasn’t been provided.  There is cause for concern if the only approach to addressing this issue is through unionization.  Unions are charged with representing their members, many of whom are institutional workers, and we have seen multiple examples of unions using their power to undermine efforts by the Disability Community to promote the community integration of people with disabilities which includes publicly opposing implementation of Olmstead plans.

7.    States and managed care organizations do not provide services and supports on an intermittent, short-term or emergent basis that are needed for community integration.

People with LTSS disabilities may need services and supports on an intermittent basis.  For example, a person with cyclical disabilities may only need services during certain times, such as during an exacerbation of Multiple Sclerosis, but if they do not get the services they need when they need them, they could be forced into an institution resulting in the permanent loss of their housing and unwanted, but preventable, institutionalization.  

People with LTSS disabilities may only need certain services and supports on a short-term basis.  When an individual with an LTSS disability becomes sick, they may need more intensive services than they do at other times, or an individual managing their own attendant services may need backup coverage when their primary attendants are unable to cover their shifts.  These situations may result in unwanted, but preventable, institutionalization.

People with LTSS disabilities may also need services and supports or have an increased need for services and supports in response to a crisis.  Such a crisis could be personal such as the death of a caregiver, or community-wide such as a disaster that displaces the individual and disrupts their services.  The COVID-19 pandemic is another example of a crisis.  In this case, emergency LTSS in the community could have saved the lives of people in nursing facilities and other institutions by giving them a way to leave the facility and socially distance.  Advocates learned that they had no legal argument to require states to provide these services, even as death swept through the facilities “like fire through dry grass.”

DIA recognizes that these services are critical to community integration and treats the failure to provide services and supports on an intermittent, short-term or emergent basis as illegal discrimination and gives individuals with LTSS disabilities the right to take legal action to get the services they need.  

HCBSAA is generally silent on this issue, although the bill language does require that in order to qualify for HCBS the individual must have a functional impairment that is expected to last at least 90 days.

8.    States and managed care companies implement policies, such as a requirement that an individual utilize informal support, which restrict, limit, or delay the ability of an individual with an LTSS disability to secure a community-based long-term service or support.

Home care was originally developed in the 1960s to be an adjunct to assistance provided to a Disabled individual by their family.  Sixty years later, when Disabled individuals are being assessed for community-based services, they and their families are often asked whether the family can provide the services instead.  It doesn’t matter whether the individual may feel uncomfortable with receiving the assistance or whether providing the assistance can be a hardship on the family.  

In some cases, the assessment process can become a high-pressure technique to get the family to provide services.  Advocates have decried such policies as the Disabled individual may be seeking services to become more independent of a family member due to concerns about domestic violence or abuse.  States and managed care companies may implement other policies which restrict, limit, or delay HCBS.

DIA makes such policies and practices illegal and gives individuals with LTSS disabilities the right to take legal action.  

HCBSAA is silent on this issue.  The proposed bill does include language in the assessment about to preventing the provision of “unnecessary” care but does not define that term which is often used to define unpaid assistance that can be provided by family or other informal caregivers.  It is possible that this language would reinforce policies which expect family members to provide assistance.

9.    States fail to provide individuals with LTSS disabilities community-based long term services and supports as an alternative prior to institutionalization.

When confronted with potential institutionalization, most people with LTSS disabilities are told that they don’t have a choice or they need to make the “right choice” and go into the institution.  Frequently, institutionalization immediately follows an acute care hospitalization and the individual neither has the time or the state-of-mind to explore their alternatives.  Professionals, too often, take the quickest and easiest option which is – sadly – institutionalization.  

It doesn’t need to be like this.  States could, but don’t, require that hospital discharge planners present individuals with HCBS alternatives when placement in a nursing facility is considered.  States could also require nursing facilities to ensure that the individual is assessed for community-based services when they convert a short-term rehab placement into a long-term stay, but again they don’t.  

DIA requires that individuals with LTSS disabilities are offered the alternative of community-based long-term services and supports prior to institutionalization, and that if selected those services are provided.  Failure to make this notification is treated as illegal discrimination.

HCBSAA does not address this issue.

10.    States do not regularly notify institutionalized individuals that they can receive services and support in the community.

Institutionalized individuals generally are unaware of any alternative to institutionalization, and the longer they have been institutionalized, the less likely they are to seek community reintegration.  In discussions with one state Medicaid Director, she pointed out that after a number of months the residents stop asking to go home which she felt indicated they had “adjusted to the facility.”  Advocates pointed out that the data she was reviewing documented their loss of hope.  

Even if individuals are informed that they can get services to return to the community, they may not fully understand or believe it.  In fact, one individual who was transitioned back into the community by a Center for Independent Living informed his Transition Specialist that when he was asked if he wanted to leave, he didn’t believe them and “only said ‘yes’ to call the bluff”.  Repeated notification reinforces that community integration is a viable option.

Although, as part of the Minimum Data Set, nursing facilities are supposed to ask individuals whether they want to return to the community and make the appropriate referrals, it is clear that some facilities don’t ask the question because there is never a referral from that facility to the community-based organizations doing transition work.  There is virtually no recourse for advocates who identify such issues.

DIA requires that institutionalized individuals are offered the alternative of community-based long-term services and supports.

HCBSAA funds transition services, but does not require that institutionalized individuals be notified that they may receive services in the community.

11.    States and managed care organizations fail to make reasonable modifications when they are necessary to allow individual with LTSS disabilities to receive community-based long term services and supports.

The ADA requires that states make reasonable modifications to accommodate individuals with disabilities because a basic policy change can sometimes make a huge difference, however managed care organizations are not necessarily required to make such reasonable modifications.  

DIA requires that both states and managed care organizations make reasonable modifications to allow individual with LTSS disabilities to receive community-based long term services and supports.  Failure to do this would be treated as illegal discrimination.

HCBSAA is silent on this.  Individuals may be able to make a legal case against a state which refuses to make such a modification under Title II of the ADA if the individual is “at serious risk of institutionalization”.  There would be no legal mechanism to address this type of discrimination by managed care organizations.

12.    States have not ensured there is sufficient affordable, accessible and integrated housing to allow individual with LTSS disabilities to choose to live in the community.

You cannot leave an institution if you do not have a place to live.  Consequently, the lack of affordable, accessible and integrated housing is one of the most significant barriers to community integration.  This is particularly true in areas where rental costs have significantly outpaced the income of people with disabilities living on governmental benefits, including major cities like San Francisco, New York, Boston and Denver.  It is also an issue in areas where there is older – and less accessible – housing stock.

Additionally, when they can get housing, individuals with LTSS disabilities are often forced to go into provider-owned housing, like assisted living or supported housing, where the agency that provides in-home support also owns the housing.  This can be problematic because it undermines the control the Disabled individual has over their life.  A dispute over service delivery can result in a loss of housing and institutionalization.  An issue with the landlord can result in the threat to stop much-needed services and supports.  Both create a serious imbalance of power and undermine the autonomy of Disabled individuals.  The provider agency is able to threaten the individual with eviction and institutionalization if they do not comply with the expectations of the provider.  Consequently, it is critically important that individuals with LTSS disabilities at least have the option to live in housing that is independent of service delivery – where their service provider is not also the landlord.

DIA treats the failure states to ensure that there is sufficient affordable, accessible, and integrated housing to allow an individual with an LTSS disability to choose to live in the community as illegal discrimination. It requires states to ensure that individuals have the option to live in housing that is independent of service delivery – where their service provider is not also the landlord.

HCBSAA is silent on this issue, except for providing assistance with transition costs like paying for security deposits and providing housing supports.  

Addressing unwanted institutionalization is critical now as our country responds to the COVID-19 pandemic.  COVID-19 killed nearly one-in-ten nursing facility residents nationally, and in some states the death toll is even worse – like New York where more than one-in-seven nursing facility residents died from COVID-19.  The carnage isn’t over.  Although slower, nursing facility deaths continue to mount with a new outbreak in a Kentucky nursing facility being recently reported even though the vast majority of the facility’s residents were vaccinated.  

Some people are trying to portray the HCBSAA as a replacement for the Disability Integration Act.  Such individuals – who are not institutionalized or at significant risk of institutionalization at this time – need to recognize that the decision-making structures in the Disability Community are structurally-ableist and generally exclude – or significantly limit participation by – individuals most impacted by this issue.  

Efforts to make HCBS portable – moveable from one state to another – are laudable but should not eclipse or replace efforts to secure a right for people with LTSS disabilities to live in freedom.  We look back to our founder’s focus on fundamental human rights and on the most disenfranchised members of the Disability Community.  This focus distanced Reverend Blank from more affluent groups much in the same way as is happening to our voice now.  According to Reverend Blank, “…a movement cannot really change things unless they address the poorest, the least.”  We agree and the Disability Community cannot ignore the needs of those who are locked away in institutions or at risk of unwanted institutionalization.

ADAPT urges policy makers to recognize that DIA and HCBSAA are not mutually exclusive and – in fact – can work hand-in-hand to advance the right of people with disabilities to live in freedom.  The Biden Administration and Democrats in Congress seem to intend to pass the language in HCBSAA as part of a larger infrastructure package.  That makes understanding the differences between DIA and HCBSAA even more critical.  Although there are issues addressed in DIA which could not be passed using the “budget reconciliation” strategy, Congress CAN still incorporate language changes that addresses many of the issues currently only addressed by DIA.  Passing a more robust HCBSAA would lay the groundwork needed for ultimately passing the Disability Integration Act by significantly reducing the Congressional Budget Office “score” associated with DIA.  To ensure this happens, the lead sponsors of the HCBSAA should acknowledge that the HCBSAA strategy – even with stronger, more comprehensive language – would leave still leave important policy issues unaddressed.  They need to reiterate their support for immediately passing the Disability Integration Act.

American Disabled for Attendant Programs Today – ADAPT – is ready to work with Members of Congress toward this end.  On March 16th, we provided updated language for the Disability Integration Act to Vice President Harris and the Biden Administration when she visited Denver.  We have reached out to the sponsors of the HCBSAA and publicly urge them to work with us on specific language changes to the HCBSAA and to help us pass DIA to FREE OUR PEOPLE!

American Disabled for Attendant Programs Today