Bait and Switch: Do proposed CMS rules on person-centered planning undermine decision making by the person-centered planning team?

This is one issue that I did not cover in my comments  on the Centers for Medicare and Medicaid Services (CMS) proposed regulations [CMS-2249-P2] for Medicaid Home and Community Based Services (HCBS) waivers. Although the CMS explicitly endorses the use of person-centered planning in determining services for people using HCBS waivers, at the same time it takes away some of the authority of the PCP team to make decisions concerning the individual with a disability by allowing a "functional needs assessment" to determine clinical and support needs.

This is from background information on the proposed rules:

The person-centered service plan must identify the strengths, preferences, needs (clinical and support), and desired outcomes of the individual. The person-centered planning process is conducted in a manner that reflects what is important for the individual to meet identified clinical and support needs determined through a person-centered functional needs assessment process and what is important to the individual to ensure delivery of services in a manner that reflects personal preferences and choices. [emphasis added]

I think the most accurate translation of this is that a so-called "person-centered functional needs assessment process", probably a standardized state assessment, will determine the clinical and support needs of the individual. Although the individual will necessarily be the object of the needs assessment, there is no guarantee that the individual or his or her guardian will have any say in the identification of needed services. By the time the person-centered planning process occurs, the needs that will be written into a service plan will already be determined. The PCP process will be reduced to an exercise in self-expression by the individual who will be allowed to express preferences within the limits of the needs already determined, rather than allowing the individual and people who know and work with the person to determine what, when, where, how, and by whom the services will be provided.

Although in any program that uses public funds to pay for services, there is a need to determine overall eligibility for the program, but that is essentially an administrative function and should not be confused with the practical aspects of working out the details of what services will be needed and the conditions under which they will be provided.

The Michigan Developmental Disabilities Council submitted comments on this issue to the CMS. [Developmental Disabilities Councils are mandated by the federal Developmental Disabilities Assistance and Bill of Rights Act to advocate for people with developmental disabilities and to pass on federal funds in the way of grants to further the goals of the DD Act.] 

These are the comments  from the Michigan DD Council:

Under ‘Person-Centered Planning,’ it says, “A requirement for a person-centered functional assessment is set forth in the proposed rule which ensures that an objective assessment is the cornerstone for determining level of need.”

Michigan advocates do NOT support standardized functional assessment. State law requires that the Person-Centered Plan determines what a person’s needs are and what supports he or she should receive. When service providers have used a functional assessment, it has been typically to establish funding levels, which should only be determined by a person-centered planning process. Allowing such an instrument to overrule the Person-Centered Plan completely negates the PCP process. Advocates in Michigan have repeatedly opposed this over a period of many years. I understand that CMS does not endorse using functional assessment for this purpose, but experience tells us that, when it is used, it becomes a rate-setting process.

Other comments:

•    Too many professionals will use those tools to rationalize taking choices away from an individual. It is too often used as an excuse to allow someone else to totally control decisions for another person's life. A standardized test should never be used as an excuse to segregate or exclude someone. They should not be used to decide someone's competence or have a huge weight in major life decisions.
•    Standard assessment can be a way to impose the professional’s opinion on the person whose life it is. It becomes a barrier rather than assistance.
•    The major question is how a standard assessment process would interact with person-centered planning, because it is often used to overrule the PCP.
•    Assessment may not truly reflect a person’s wants versus identified and recognized needs and quality of life issues.
•    Assessment always implies that you know something that the person being assessed doesn't, and professionals feel obligated to use it regardless of the choice of the person.
•    When standard assessment has been used before, and in other circumstances, it has worked out badly for the person being assessed. Standard assessment can be a way to impose the professional’s opinion on the person whose life it is. It becomes a barrier rather than assistance.

Michigan's repeal of motorcycle helmet law leads to more deaths and incapacitating injuries

This is from an article at MLive, "Analysis: Motorcycle helmet use falls, injury rate climbs since law change" by Jonathan Oosting, 7/19/12. It shows the evidence so far, that Michigan's repeal of its motorcycle helmet law has caused more deaths and incapacitating injuries (i.e. disabilities) for motorcycle riders not wearing helmets.

The good news is that at least for the first two months after the law was repealed, 80% of riders involved in a crash continued to wear helmets. For the third month, that figure dropped to 68%. According to the article, a spokeswoman for the insurance company State Farm of Michigan said the findings were consistent with a National Highway Traffic Safety Administration report.

Links to comments on the CMS proposed regulations (CMS-2249-P2) for Medicaid waivers

It is always illuminating to read comments on proposed policies for people with disabilities from people and organizations with differing perspectives, agendas, and interests. Here is the link for finding comments on the proposed regulations on Home and Community Based Services waivers from the Centers for Medicare and Medicaid Services  (CMS-2249-P2). To read the comments, click on the blue highlighted text that begins with the abbreviation for the state and the name or organization of the commenter. Sometimes the comments appear in full on the opened page, but usually they are attached, either as a Word document or a PDF file. Look for "View Attachments" and click on "DOC" or "PDF" to open.

HCBS Medicaid waivers have been around for a long time and are used to pay for community services as an alternative to services provided in institutions. Medicaid law identifies institutions as nursing homes, Intermediate Care Facilities for the Mentally Retarded (ICF/MR), hospitals for mental diseases and other hospital settings. In MIchigan, the Habilitation Supports Waiver (HSW) is the Medicaid waiver for people with developmental disabilities. It is currently used to pay for a wide range of services and settings from supported living services provided in the disabled individual's own or family's home to state-licensed community-based facilities that provide more intensive care and support. It also pays for community living services that enable an individual to fully participate in community activities and services, as well as specialized day and skill training programs in accordance with the individual's plan of services developed through a person-centered planning process.

If these proposed regulations were to become final as they are now written, they would make it more difficult to use Medicaid waiver funding to pay for settings that are deemed to have "qualities of an institutional setting" as defined by the regulations and ultimately the Secretary of the U.S. Department of Health and Human Services. This would undermine and lead to the likely closure of many specialized programs that have been designed by family and community organizations that are person-centered, consumer-driven and based on choice. Also threatened would be state-licensed facilities and other programs operated by Community Mental Health agencies or CMH contracted providers.

Here are links to comments that are of special interest to people living in Michigan:

• Comments from the Michigan Department of Community Health
• Comments from Michigan Protection and Advocacy Services (MPAS)
• Comments from the ARC Michigan

The national organization for protection and advocacy agencies, the National Disability Rights Network (NDRN), has also commented on the proposed regulations. Many national and statewide organizations have submitted comments that agree with the comments from NDRN.

Here is an especially poignant plea from 86-year old parents who have finally found the right place for their son and fear it might be threatened by these regulations.

Comment #6 (CMS-2249-P2): Limiting Choice by Eliminating Needed Options

The proposed rules contemplate eliminating choices that are deemed “institutional” at the discretion of the Secretary of Health and Human Services:

We note that home and community-based settings do not include nursing facilities, institutions for mental diseases, intermediate care facilities for mentally retarded, hospitals, or any other locations that have the qualities of an institutional setting as determined by the Secretary. In considering whether a setting has the qualities of an institutional setting, we will exercise a rebuttable presumption that a setting is not a home and community-based setting, and will engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex. We expect to issue further guidance regarding such settings. Other characteristics that could cause CMS to consider a setting as “institutional” or having the qualities of an institution would include, but not be limited to, settings which are isolated from the larger community, 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, and activities, or limit individuals' opportunities to pursue community activities.

Some of the most creative living arrangements that I have seen or read about have come from parent groups that have designed housing and living situations that fit the needs of their disabled family members. These groups are exceptionally frugal because they have to be. They are usually limited financially and they form strong bonds with community organizations, including churches and other non-profits, to help them achieve their goals.

HCBS waivers can be a major source of funding for individuals participating in these very specialized programs and living arrangements that are usually enthusiastically supported by the individuals themselves and their families. “A rebuttable presumption” that they are somehow “institutional” as determined by and at the discretion of the U.S. Secretary of Health and Human Services could very well harm or destroy some of these projects that have that have involved their communities in being part of their success.

Delete any language that would limit options that are person-centered, consumer-driven, and based on choice.

Comment #5 (CMS-2249-P2): Standards for HCBS Settings

The CMS proposes standards for settings in which Home and Community Based Services, Medicaid-funded waiver services, may be provided: 

… we are proposing to clarify now that home and community-based settings must exhibit the following qualities, and such other qualities as the Secretary determines to be appropriate, based on the needs of the individual as indicated in their person-centered service plan, in order to be eligible sites for delivery of home and community-based services:

• The setting is integrated in, and facilitates the individual's full access to, the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, like individuals without disabilities;
• The setting is selected by the individual among all available alternatives and identified in the person-centered service plan;
• An individual's essential personal rights of privacy, dignity and respect, and freedom from coercion and restraint are protected;
• Individual initiative, autonomy, and independence in making major life choices, including but not limited to, daily activities, physical environment, and with whom to interact are optimized and not regimented; 
• Individual choice regarding services and supports, and who provides them, is facilitated.
• In a provider-owned or controlled residential setting, the following additional conditions must be met. Any modifications of the conditions (for example to address the safety needs of an individual with dementia) must be supported by a specific assessed need and documented in the person-centered service plan
• The unit or room is a specific physical place that can be owned, rented, or occupied under a legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that the tenants have under the landlord/tenant laws of the State, county, city, or other designated entity. [We are soliciting comments as to whether there are other protections, not addressed by landlord tenant law, that should be included]

The proposed rule goes on to describe in even more detail, the requirements of HCBS settings such as privacy in sleeping units, lockable entrance doors, shared units only by individual choice, freedom to furnish and decorate, access to food at any time, individual control of schedules and activities, choice of visitors at any time, and physical access to the setting.

Two more conditions for eligible settings are added:

• Individuals receiving HCBS must not have their independence or freedoms abridged by providers for convenience, or well-meaning but unnecessarily restrictive methods for providing person-centered services and supports; 
• Individuals with cognitive disabilities and other impairments may require modifications of the aforementioned conditions for their safety and welfare.

What is the problem with having stringent standards for HCBS settings? 

My sons have profound intellectual disabilities and function at the level of 6-12 month-old infants. Many of these “standards” have no meaning to them nor are they relevant to ensuring high quality care, appropriate services, and opportunities to interact with other people. For instance, my sons are not able to work and do not need access to integrated employment opportunities. Being able to lock their door has no meaning to them, nor does it matter to them whether they rent, own, or lease the place where they live. Protection of their rights under the law, basic health and safety standards, and proper training of staff are of the most importance for ensuring their comfort and well being than most of the items on this list.

I understand how these standards might be vitally important to a person who functions at a much higher level intellectually and physically, but when standards are written for only higher functioning people they do a disservice to people like my sons. These standards place an extra burden on service providers that may be unnecessary or even contraindicated because of the person’s disability. It would be better to use this list as items for consideration by the person-centered planning team rather than as a list of standards that will ultimately be broken whenever health and safety cannot be maintained.

The person-centered planning process that includes the individual, their family, the professionals who work with them and others of their choosing should be the basis for arriving at a plan of services and determining an appropriate setting. Unless there is something wrong with this process there is no reason to second-guess the decisions that come out of it.