Thursday, January 26, 2017

CMS request for comments: VOR responds Part 1

In November 2016, the Centers for Medicare and Medicaid Services (CMS) issued a “Request for Information” (RIN 0938-ZB33) to inform the agency’s future decision-making with regard to: accelerating access to Home and Community Based Services (HCBS); ensuring the quality of HCBS including beneficiary health and safety; safeguards to ensure safety and reduce fraud, waste and abuse in the HCBS program; and strengthening the HCBS home care workforce.” 

CMS is the federal agency that regulates Medicaid, including Home and Community-Based Services (HCBS) that are provided through Medicaid Waivers or through State Plans. Comments in response to the Request for Information were due on January 9th, 2017.

This is the full response to CMS from VOR to the request for comments. I participated in writing the VOR response as part of a VOR committee. [JRB] Below is part 1 of the response:


VOR is a national non-profit advocacy organization representing individuals with intellectual and developmental disabilities (I/DD) and their families. We support a continuum of quality care options to meet the diverse needs of people with I/DD. This includes residential options in the family home, the individual’s own home, licensed group homes, disability farms, intentional communities, and Medicaid-licensed "congregate" [setting in which more than 3 people with disabilities live or receive services] care facilities (i.e., ICF’s/IID). We also supports the full array of employment options – competitive employment, sheltered workshops and facility-based day programs.

...We are the only national organization that represents the interests of individuals who choose and require facility-based residential supports. Federal law, including Medicaid, the Americans with Disabilities Act and the 1999 U.S. Supreme Court Olmstead decision require the provision of a range of service options responsive to all levels of need...

...We also support a service system driven by the choices of individuals with I/DD with the aid, when necessary, of their parents and guardian. A person centered planning process guided by these primary decision-makers ensures the formation of individualized plans of service which identify and address the unique needs and desires of the vulnerable persons served through the selection of appropriate supports from a full continuum of care. Such a system honors Olmstead, which makes individual choice paramount and emphasizes the need for a wide range of services.

Before answering the questions put forth in the CMS Request for Information, VOR has concerns about CMS policies, including the 2014 HCBS Settings rule. Changes to the rule should be considered to remove barriers to a cost-effective system of care for people at all levels of disability:

1. HCBS policies as now written are being used to enforce an incorrect and harmful misunderstanding of the Americans with Disabilities Act as interpreted by the 1999 Supreme Court Olmstead decision:

Many, if not most, federal agencies and federally-funded advocacy groups serving people with I/DD, incorrectly interpret Olmstead and the ADA to require deinstitutionalization and HCBS settings, regardless of individual need and choice. The 2014 HCBS rule encourages this interpretation by disqualifying certain settings from receiving HCBS funding unless they have undergone “heightened scrutiny”, a process that ultimately leaves the determination of whether a setting is “community enough” up to CMS, rather than the individual with I/DD, and when necessary, their parents and guardian.

The bias against any kind of congregate residential setting where more than 3 or 4 people with disabilities are served together is clear from the restrictions placed on even the contemplation of future planned communities and congregate settings. The same holds true for facility-based occupational settings and the increasing restrictions placed on them. Such settings offer features to ensure the safety and health of residents while providing a community in which individuals with I/DD can reach their full potential and maximize their independence. This bias is particularly destructive as it directly attacks the right of individuals with I/DD to freedom of assembly, a fundamental American right.

The ADA and Olmstead assure opportunities for people with I/DD, but they do not dictate one-size-fits-all solutions. Individual choice among the widest possible range of quality living and occupational options is what is necessary to realize the goals of the ADA and Olmstead. VOR supports the full reading of Olmstead, making individual choice of services paramount and ensuring a full range of living and work options in order to meet the spectrum of needs of this very diverse population.

See also from VOR, "The Olmstead Decision Has Been Misinterpreted" and Celebrating The 17th Anniversary of the Olmstead Decision: Opportunities and Choices

2. The HCBS rule makes presumptions about the abilities of people with IDD to live independently, work, and participate in the community that do not apply to many individuals with I/DD, especially those with the most complex, severe, or profound disabilities. These can lead to inappropriate services and residential options being imposed on individuals and their families that are unwanted and ignore individual needs for special accommodations to ensure the health and safety of the person with I/DD.

In the Request for Information, CMS cites the ADA, as saying that “the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals”. CMS needs to clarify that this goal is not a requirement imposed on individuals with disabilities. In fact there are numerous protections in the ADA, Olmstead, and Medicaid law that assure appropriate services based on individual need and preference. The integration mandate from the ADA regulations states that “a public entity must administer services, programs, and activities in the most integrated, least restrictive setting appropriate to the needs of qualified individuals with disabilities.” [28 C.F.R. § 35.130(d)] [emphasis added]

Making presumptions about an individual’s abilities and setting unrealistic goals which do not recognize their disabilities is dangerous, dehumanizing policy. If we as a society are to honor the full reading of Olmstead, we must first be willing to honor the individual with I/DD by recognizing and accepting who they are – abilities, disabilities and all. Doing so is the first step in providing a quality disability service system that protects health and safety.

3. CMS should lift its prohibition on using HCBS funding to pay for services that are available in Medicaid-licensed facilities, such as Intermediate Care Facilities (ICF’s/IID), or in proximity to these facilities. These facilities have many resources that are often desperately needed by people living in community settings: specialized medical, behavioral, and dental services, recreation, social activities, and respite care, to name a few. To arbitrarily cut off HCBS funding to individuals living in community settings who wish to avail themselves of these resources, squanders resources that could give valuable support to individuals living in the community.

We believe strongly that proximity to a facility with its services, peers with disabilities, and amenities, at best enhances community qualities and should not disqualify individuals living in HCBS settings from voluntarily utilizing the resources available in ICF’s/IID. Often, the nature of the services provided by the ICF/IID are specifically tailored to the needs of individuals with I/DD, and the individuals performing those services are more familiar with the needs and sensibilities of this unique population.

Therefore, CMS regulations that prohibit the provision of HCBS residential and work settings on or adjacent to ICF/IID campuses are harmful in terms of limiting opportunities and marginalizing vulnerable people. Segregating people with lower levels of disability from people with higher levels of disability has the effect of stigmatizing and marginalizing the individuals who choose and rely upon ICF’s/IID care. CMS disparages ICF/IID settings by labeling them “isolating” or “segregating” from the larger community. The residents and their families view their homes as communities designed to address their needs and provide them with a combination of opportunities and services not available anywhere else. CMS should embrace ICF’s/IID as an important part of a continuum of care.

4. CMS needs to assess the true cost of implementing the 2014 HCBS rule. Complying with the rule is proving costly for the states, resulting in states cutting services and displacing vulnerable individuals from their homes. The closing of congregate settings to comply with the new rule and so-called Olmstead enforcement activities have further harmed disability service systems in states by increasing wait lists and forcing people into inappropriate settings they did not choose, settings that are often unprepared to ensure their health and safety. The whole system of care is being undermined in the name of inclusion, integration and Olmstead enforcement, contrary to the plain language and intent of Olmstead as a vehicle for choice.

The expectation of savings from moving individuals from congregate care (ICF’s/IID) to smaller licensed group homes, or from small group homes to unlicensed community settings, is unlikely to be realized unless there is also a reduction in the quality or quantity of services needed by individuals with I/DD. These expectations are often based on faulty cost comparisons, which fail to account for the full array of public benefits accessed by individuals receiving HCBS care. Unsustainable costs have resulted in even longer waiting lists and tragic outcomes. [See VOR’s “Widespread Abuse, Neglect and Death"  in Small Settings Serving People with Intellectual Disabilities”, 2016 ]

Often, the increase in HCBS comes at the expense of ICF/IID residents who lose their homes due to federally funded litigation. Happily situated ICF residents pressured or forced to leave ICFs through litigation receive HCBS placements ahead of individuals who have been waitlisted for years. The policy of shutting down successful residential placements is even more absurd when you consider many of the wait-listed individuals may in fact prefer and can benefit from HCBS settings. These individuals are forced to wait longer now that former ICF/IID residents move to the front of the line.

The Case for Inclusion annual reports produced by UCP on how well state Medicaid programs serve people with I/DD, shows that with the increase in the use of Home and Community Based Services over the last decade, waiting lists for residential and other services have increased from 74,000 in 2005 to 350,000 in 2016, an increase of nearly 400%. At the very least, it can be said that increased use of HCBS has not resulted in fewer people waiting for services.

5. CMS policies as well as federally-funded advocacy organizations portray congregate settings as isolating and segregating, a “last resort” on the continuum of care and services. Whether these settings are technically “institutions” as defined by Medicaid law, the individuals and families who rely on this level and type of care do not view them as “institutions” in the disparaging way the term is usually used. 

Facilities such as ICF’s/IID, and other licensed and regulated group settings, and innovative intentional communities for people with I/DD provide lifesaving care in an environment that enhances the individual’s access to family, friends, and the greater community, just as small, unlicensed supported living situations can isolate and segregate individuals in settings that jeopardize the individual’s safety, health, and peace of mind. [For example, please see the 2012 report from Disability Rights Washington and Columbia Legal Services, “Too Little, Too Late: A Call to End Tolerance of Abuse and Neglect”, an investigation of abuse and neglect in the Medicaid-funded Supported Living Program.] Also, the 7th Circuit Court of Appeals found that, "Isolation in a home can just as 'severely diminish the everyday life activities' of people with disabilities. (Olmstead, 527 U.S. at 601) “In fact, although family relations might be enhanced at home if people are around, isolation in a home may often be worse than confinement to an institution on every other measure of ‘life activities’ that Olmstead recognized." (Steimel and Maertz, et al., v. Wernert)

See also VOR’s “Giving a Voice to Families and Guardians - A Survey of Families and Guardians of Individuals with Intellectual and Developmental Disabilities In Various Residential Settings”, April 2015. 

As Sister Rosemary Connelly, the director of Misericordia, so wisely puts it: "Big can be bad. Small can be bad. Both can be good." Misericordia is a “community of care” in Chicago that serves over 600 people with mild to profound I/DD through a spectrum of residential options and services.

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