Comment #5 on CMS proposed regs (CMS-2296-P): limiting access to services and preventing appropriate care

ISSUE #5: The proposed regulations to "prevent the provision of unnecessary or inappropriate care" will do the opposite: limit access to needed services and prevent care that is determined to be appropriate by the individual and people who are familiar with his or her needs.
 
CMS proposes to limit HCBS waiver services only to settings that are "integrated in the community, provide meaningful access to the community and community activities, and choice about providers, individuals with whom to interact, and daily life activities..."  Other comments criticize settings that do not allow individuals “to choose whether or with whom they share a room, limit individuals’ freedom of choice on daily living experiences such as meals, visitors, activities, and limit individuals’ opportunities to pursue community activities.”

Any form of congregate living, even living with one’s own family, will inevitably have rules affecting an individual’s daily life activities and freedom of choice. There may also be restrictions on “daily life activities” to protect the person and others from harm (i.e. not allowing someone to run out in traffic and get hit by a car but instead providing a fenced in yard where the person can move about without being injured). To eliminate options that have rules and restrictions because some people would find those rules and restrictions incompatible with their own needs and desires is foolish.  

The person-centered planning meeting should be the place where the individual’s needs and preferences are matched with compatible and appropriate services and living arrangements and where modifications to existing settings and acceptable compromises are determined. Maintaining a full continuum of services and settings is a better plan than eliminating options because some people might find them objectionable.

The proposal states that a setting is not integrated in the community if it is…"Located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment or custodial care; in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual's diagnosis or disability, as determined by the Secretary; or…Has qualities of an institutional setting, as determined by the Secretary..."

These proposals appear to eliminate HCBS funding for many forms of congregate care for people with disabilities or for any specialized services provided in group settings and designed for people with specific disabilities. It appears that CMS has come to the conclusion that the worst thing that could happen to people with disabilities is that they would have to associate with people like themselves. 

Here are just a few of the programs and services that could no longer be provided with HCBS waiver funding:
 
ICF/MR community resource programs that offer medical, dental, respite, and recreational services to people living in surrounding communities…Harbor House Ministries in Ottawa County, Michigan, that serves people with the most severe disabilities in three 12-bed group homes designed and planned by parents and caregivers with support from a variety of community organizations – care and support includes both specialized services along with appropriate community involvement for each resident… Just Us Club in Ann Arbor, Michigan, a parent-directed afterschool program for students and an activity/respite program for adults, all with moderate to severe developmental disabilities - it is the most popular respite program in the county and provides care for adults for about $6.00 per hour (about half the cost of paying a respite worker to come into one’s own home); a group home in Grand Rapids, Michigan, for high-functioning adult men with autism built on the grounds of a retirement community – each resident has his own bedroom and bath, living independently but together in a supportive environment…a local nursing home that provides overnight respite care for a severely brain-injured man who lives with his family….planned communities in Florida modeled on retirement communities, developed by families who are responding to the waiting list of about 20,000 people with developmental disabilities who receive no services…Wheelchair basketball for people with spinal cord injuries…Group homes designed for people with specific medical problems to help manage the medical condition while providing services for as normal a life as possible…The Community Respite Center in Jackson, Michigan, that provides respite care and activity programs for children and adults at a Medicaid nursing facility -- guests can be accommodated at any level of nursing skill including feeding tubes, medications, and breathing and suctioning treatments…

While there are hundreds of thousands of people with disabilities on waiting lists for services across the country, there is no shortage of ideas for improving the lives of people with developmental disabilities. When CMS deliberately and unnecessarily narrows the choice of options available based on a misinterpretation of law and a questionable ideology, it becomes an impediment to creating a system that can truly meet the needs of the full range of people with developmental disabilities, especially for those who are either not served at all or inadequately served by our current system.

Comment #4 on CMS proposed regs (CMS-2296-P): person-centered planning regs flawed by lack of common sense

Person-centered planning should be the process by which the individual plan of services is developed. The plan of service should reflect the services appropriate to the needs and preferences of the individual including the settings in which services will be delivered. Michigan has used person-centered planning for over a decade, but for some people it has become a charade, a  meeting where the participants go through the motions of developing a plan, only to have the actual plan of services reflect only that which the Community Mental Health agency is willing and able to provide with a heavy reliance on so-called natural supports, all the things that parents and other family members do for the person with a disability to fill in the gaps.

The shortcomings of person-centered plans could be improved by better information for people with disabilities and their families emphasizing the importance of the process and the role they play in its development and better enforcement and monitoring by the state and local agencies to ensure that the process is properly implemented.

The proposed CMS regulations would do nothing to improve the process in Michigan and in many ways would make it worse.

ISSUE #4: The person-centered planning process makes unfounded assumptions, fails to mention legal guardians and families, appears to attempt to regulate unpaid family members and friendly volunteers, and could violate the confidentiality of the person receiving services.
 
Proposed regulations for a person-centered planning process make unsupported assumptions about people with disabilities: that the process will be led by the individual receiving services; that all people receiving services want to lead this process (what this means exactly is not explained) and that all have the capacity to make and communicate reasonable decisions on their own behalf. People with severe and profound developmental disabilities may function at the level of infants or young children and lack the judgment to realize the implications of their decisions if they can make them at all. No mention is made of families or legal guardians as having any place in this process.

Where a legal representative (a guardian or conservator) has been appointed by a court, that person should be recognized as the representative for the individual for all aspects of the individuals care that are covered by a court order.

CMS proposes that the person-centered plan "includes strategies for solving conflict or disagreement with the process, including any conflict of interest concerns."  It is unclear what the purpose of this statement is, but I suspect from recent events in Michigan that one reason it has been proposed is to encourage agencies to challenge the authority of guardians when the guardian is perceived by others to not represent the best interests of the person with a disability. In Michigan, some administrators and advocates have encouraged Community Mental Health agencies to challenge guardianships in court when the guardian (most are parents or other family members) disagrees with what others perceive to be the individual’s needs and preferences.  

Disagreements over agency decisions or the need for services should be handled outside of the person-centered planning process through formal or informal due process procedures including Medicaid hearings. To have them as part of the planning process can lead to intimidation of parent and family guardians and less protection of the individual from bad decisions by the agency that is funding services.

CMS proposes that the plan, “…Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals and the providers of those services and supports....Be signed by all individuals and providers responsible for its implementation." This proposal could easily be interpreted as an attempt by CMS to regulate unpaid services and supports that are provided by family, friends, and volunteers with the mutual agreement of the individual or his or her legal representative. It should be clear that participating in the planning process and voluntarily assisting the person with a disability places no legal obligation to provide unpaid services or responsibility to implement the person’s plan. 

Unpaid family and friends should be supported and encouraged for all they do voluntarily for their disabled family members and friends. They should be recognized for their important contribution to the overall support system for people with disabilities, but they should not be subject to regulation and possibly intimidation by agencies that provide services if they do not meet their “responsibilities” for implementing the plan.

CMS proposes that the Plan of Service must "be distributed to everyone involved...in the plan.” Because plans of service may contain the most intimate details of the care and support of a person with a disability, their distribution to everyone involved in the plan (both paid and unpaid) could be a breach of confidentiality.   

Distribution of the plan, unless it is to service providers under the control of the agency providing funding, should be done only with the written consent of the individual or his or her legal representative.

Comment #3 on CMS proposed regs (CMS-2296-P): flexibility vs. right to appropriate care

ISSUE #3: Combining Target populations under one waiver may have unintended harmful consequences.

Currently, when a state applies for HCBS waivers, each waiver must be limited to “one of the following target groups or any subgroup thereof that the State may define”:

• Aged or disabled, or both. 
• Mentally retarded or developmentally disabled, or both. 
• Mentally ill.

Under the new proposal, CMS states, "We recognize that some States and stakeholders want additional flexibility to combine target groups in order to provide services based upon needs rather than diagnosis or condition, and for administrative relief from operating and managing multiple section 1915(c) waiver programs."

Individual eligibility for waiver services, as well as for other government-funded services, is based on a broad diagnosis, such as developmental disability or intellectual disability/mental retardation, but the specific services provided are based on individual need as described in an individual service plan. These proposals will not change that.

By breaking down the barriers between targeted groups, it is more likely that states and local governments will see this as an opportunity to mix groups of individuals together who are incompatible. These proposed regulations do not specifically address this problem.

What if a state decides to use its single population waiver funding to serve the most people it can at the expense of the most needy or most costly population? How does CMS propose to protect people who need relatively costly services to survive, let alone to continue living in community settings of their choice?

More flexibility to states to administer programs should not come at the expense of individual protections and the right to appropriate care.

Comment #2 on CMS proposed regs (CMS-2296-P): Don't use Olmstead as an excuse

As is often the case, the Americans with Disabilities Act and the Supreme Court's Olmstead decision are being used incorrectly to justify restrictions on needed services and programs for people with developmental disabilities.

ISSUE #2: Rationale for changes are not supported by law

Under background information, the CMS seeks "to ensure that Medicaid is providing needed strategies for States in their efforts to meet their obligations under the Americans with Disabilities Act (ADA) and Supreme Court's decision in Olmstead v. L.C., 527 U.S. 581 (1999). In the Olmstead decision, the Court affirmed a State's obligations to serve individuals in the most integrated setting appropriate to their needs..."

The CMS proposed regulations go beyond this mandate and exclude settings that "have the qualities of an institutional setting".

The Supreme Court's Olmstead decision supports choice, despite the fact that it has been widely misinterpreted as a mandate to close all institutions: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187.

Furthermore, the Olmstead decision does not comment specifically on or mandate the closure of community-based programs or residential placements of any size nor does it designate these programs as institutional in nature and therefore discriminatory. Olmstead, and by extension the Americans with Disabilities Act, gives no support to eliminating or limiting access to settings that are "institution like", housing complexes that are "disability-specific" and "expressly designed around an individual's diagnosis”, if these services are appropriate to the needs of the individual.

ADA regulations on integration say, "A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." [28 C.F.R. §35.130(d)]. 

The phrase, "appropriate to the needs of qualified individuals with disabilities" suggests that appropriateness is determined on an individual basis by the individual and the people who know his or her needs, and not by regulators or advocates who have no knowledge of the person and his or her needs and preferences.

Comment #1 on CMS proposed regs (CMS-2296-P): It's the economy, stupid!

The Centers for Medicare and Medicaid Services (CMS) is proposing to change regulations for Home and Community Based Services (HCBS) waivers. These Medicaid waivers are granted to states to fund services in community settings for people who would otherwise be eligible for institutional care in a hospital, nursing facility, or Intermediate Care Facility for the Mentally Retarded (ICF/MR).

If adopted, these proposed regulations will have a significant effect on people with developmental disabilities by limiting the settings in which waiver services can be provided and changing the person-centered planning process for developing an individual plan of service. They would also increase state administrative flexibility by allowing states to combine previously targeted populations under one waiver. Currently, people with developmental disabilities are covered by the Michigan Habilitation Supports Waiver (HSW) that funds services in a variety of settings including the person's own home (either living independently or with family), supported living sites, group homes, day programs, supported employment, and skill-building and specialized community-based work programs. 
 
ISSUE #1: CMS must consider the economic climate in which changes to regulations will occur and protect people with developmental disabilities from potentially harmful effects.  
 
Many state governments, especially Michigan's, are in dire financial straits. If given the incentive and opportunity by CMS, most states would likely reduce or shift Medicaid expenditures by limiting the choice and availability of services for people with developmental disabilities and their families. These proposed regulations give states the excuse to do just that and could result in significant harm to people with developmental disabilities.

Some advocacy groups, in their zeal to promote full community inclusion for every person with a disability, have supported limits on choice through the elimination of or restrictions on access to programs and services that they believe are segregating and discriminatory. Others, especially people advocating for loved ones with more severe cognitive and behavioral disabilities, recognize the importance of maintaining a full spectrum of specialized services and living situations that meet the diverse needs of this population. It is clear from the CMS proposal that the agency has only listened to advocates who favor limiting the settings in which HCBS will be provided. Not one opinion in opposition to this approach is mentioned in the background information or account of responses received from a previous solicitation of comments on these issues in 2009.

CMS should not allow or encourage states to eliminate necessary options under the guise of promoting  community integration. 

Link to proposed regulations (CMS-2296-P)

Submit comments here.