CMS publishes new rules for Medicaid-funded Home and Community Based Services

CMS, (The Centers for Medicare and Medicaid Services), the federal agency that regulates Medicaid, has published final rules on Home and Community Based Services (HCBS). The rules affecting people with developmental disabilities and the settings that may be eligible for continued HCBS funding remain controversial, but they are better than the rules proposed back in 2012.  Much of the responsibility for defining "community" settings that are eligible for funding Home and Community Based Services has been shifted back to the states, but they will require the approval by CMS of amendments to state plans.

We will all need to pay attention to Michigan's plans to implement the new CMS rules and make sure that everyone who wishes to have a say in how the State approaches new requirements is informed and ready to respond.

This is from the Michigan Department of Community Health:

CMS has placed links to several important items regarding the new rule defining HCBS settings at http://www.medicaid.gov/hcbs, including:

·         The text of the Final Rule
·         An Information Bulletin on the Final Rule
·         A press release announcing the Final Rule
·         Four factsheets:
o   An overview of the regulation
o   Changes to 1915 (c)
o   Changes to 1915 (i)
o   Summary of Key Provisions

The site also announces the dates and times of two Webinars open to the general public:
 

• January 23, 2014: 1:00pm - 3:00pm  Public Webinar on HCBS Final Rule
• January 30, 2014: 1:00pm - 3:00pm  (repeat) Public Webinar on HCBS Final Rule

Thank you,

Lori Mitchell
Community Practices and Innovations Section Secretary
Division of Quality Management & Planning
Bureau of Community Based Services
Department of Community Health
Lewis Cass Building, 5th Floor
Lansing, MI 48913
Telephone: (517) 335-3032
Fax: (517) 241-2969
Email: MitchellL10@michigan.gov

The ARC Michigan to the State : Stop funding congregate settings

...sentenced to a bucolic lifestyle

The ARC Michigan is at it again, demanding that the state discontinue Medicaid funding for people with developmental disabilities participating in programs that don't meet the ARC's approval. This time around, The ARC MI, a state advocacy organization for people with DD, is backed up by five other advocacy groups whose executive directors co-signed a letter to James Haveman, the director of the  Michigan Department of Community Health (MDCH). Despite the backing of the Autism Society of Michigan, the Epilepsy Foundation of Michigan, the Michigan Disability Rights Coalition, United Cerebral Palsy of Michigan, and Michigan Protection and Advocacy Service, the ARC is still not persuasive in arguing that people with DD  are being discriminated against when they choose to participate in specialized programs designed for people with disabilities.

The complaint by these advocates appears to be based on the misconception that any congregate setting (a setting that serves more than two or three people with disabilities in a group to provide specialized services or residential options) is by definition discriminatory. They claim that this comes from the Americans with Disabilities Act (ADA) and the 1999 U.S. Supreme Court Olmstead decision, but this is easily disproved. This misreading or misinterpretation of the law makes one wonder if the executive directors of these influential organizations have ever read the ADA or Olmstead. Their misconception, however, is  prevalent among many government-funded advocacy groups and is even being used by state and federal governments as an excuse to eliminate specialized services and programs for people with DD. Who knows whether the advocates have deliberately misinterpreted the law, or whether they have come to believe their own misconceptions after hearing them repeated over and over again.

The project that is receiving the most attention from these groups at the moment is Benjamin's Hope, a non-profit in Holland, Michigan. This is a newly opened parent-initiated project that will eventually house 24 people with autism and other developmental disabilities in custom-designed homes. A 40-acre campus will provide recreation, meaningful employment, and other programs for both residents and the larger Holland and Ottawa County communities. It is a public/private model, that uses public funds for direct care. Medicaid "Home and Community Based Services" funds pay for direct services for participants but specifically do not pay for housing, food, or other basic supports. (HCBS funding is generally available for eligible DD adults regardless of where they live.)

The advocates shrilly contend that the existence of projects such as Benjamin's Hope reverses policies "in the direction of integration and inclusion…" They find them "unwarranted and frightening", calling the "demand" for public dollars "a form of blackmail...They are saying we will decide where and ho[w] people, including our children, with developmental disabilities will be served well past our life time. They will be isolated, segregated and served in institution-like situations, albeit a private one, using public dollars."

"…should Medicaid/CMS [the federal Centers for Medicare and Medicaid Services] end up permitting funding, generations of persons with developmental disabilities will be sentenced to occupy isolated settings separate from real community and the rest of us, even if at some artificial point community contact is attempted." [click here for more on the controversy over proposed CMS rules.]

Blackmail? Isolation and segregation? Institution-like situations? That's strong language for these organizations to use, especially considering that their letter offers no evidence to support any of these accusations. I know of no individuals living at Benjamin's Hope, for instance, who had to blackmail their local Community Mental Health agency to receive funding. It is safe to assume that people involved in the project were funded only after a careful process of individual evaluation, person-centered planning, and the weighing of possible alternatives. Their families most likely did a great deal of soul-searching before they made the momentous decision to place the care of their loved-ones in the hands of others.

Just how isolated and segregated are the people living at Benjamin's Hope? Within two weeks after the ARC Michigan letter was written and signed, Benjamin's Hope held its grand opening,"the Firelight Festival of Hope", that included not only the people directly involved in the project, but hundreds of people from the community enthusiastically showing their support.  In addition, State Senator Arlen Meekhof and state Representative Amanda Price presented a tribute honoring the non-profit, signed by Lt. Governor Brian Calley whose daughter has autism. The success of Benjamin's Hope is strongly  linked to the fact that it is engaged with and supported by its surrounding community.

Furthermore, as far as I am aware, no one involved in Benjamin's Hope or any other family-initiated and community-supported project ever suggested that they intend to impose their model of community living on any individuals who do not want it. This is in sharp contrast to the approach taken by the professional advocacy organizations.

Perhaps the ARC and the co-signers of the letter to the State would not have found projects such as Benjamin's Hope so "frightening" if they had ever bothered to talk to the people involved or to their families. None of the executive directors who signed the letter bothered even to contact the director of Benjamin's Hope.

Could there be a more obvious display of the arrogance of advocates who are so sure that they know what is best for everyone that they never have to contemplate the harm they may be doing to the people they claim to represent?

********************************

Links to documents:

Letter to CMS from Dohn Hoyle, the ARC MI Executive Director, 8/13/13
Letter to CMS from U.S. Representative Huizenga supporting Benjamin's Hope
Letter to MDCH from The ARC MI and other advocacy groups 9/3/13

The ADA, Olmstead, and Choice: 

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities. It requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities”, but it does not define what an appropriate setting is for every person with a disability. Identifying needs and the appropriateness of settings can only be determined on an individual basis.

The Olmstead decision determined that unjustified institutionalization is discrimination. Transfer to a community placement from an institution is required only if the State’s treatment professionals have determined that community placement is appropriate, the individual affected does not oppose the transfer, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of other with mental disabilities.
 
Olmstead Resources
1999 U.S. Supreme Court Olmstead Decision
Olmstead Presentation by Bill Burke
What Olmstead is Not

Rules limiting choice for Home and Community Based Services [CMS-2249-P2] still pending

Bambi times two

Controversial rules [CMS-2249-P2] proposed by the Centers for Medicare and Medicaid Services last year, would restrict funding for Home and Community Based Services for people with developmental and other disabilities to settings defined arbitrarily by CMS as sufficiently in the "community". These rules are still pending. They have not yet been approved and implemented.

What's this all about?

The Centers for Medicare and Medicaid Services (CMS) is the federal agency that regulates Medicaid. Medicaid Home and  Community Based Services (HCBS) are funded under a variety of waivers - in Michigan, the Habilitation Supports Waiver (HSW) is targeted to fund services for people with developmental disabilities. Other services more generally available to people served by the mental health system in Michigan are provided under a State Plan approved by CMS. State Plan services cover most services under the HSW with a few exceptions. The proposed rules, CMS-2249-P2, are intended to apply standards for Home and Community Based Services uniformly for state plan and waiver services.

The most controversial and potentially disruptive part of the proposed rules are the standards that they set for "community settings" where Home and Community Based Services are provided. Under Medicaid law governing HCBS there is an explicit prohibition against using HCBS funding in institutional settings - nursing facilities, institutions for mental diseases, intermediate care facilities for the mentally retarded, and other hospital settings. Institutional settings have their own Medicaid funding streams. Home and  Community Based Services, such as those covered by Michigan's HSW for people with DD, are intended as an alternative to services provided in an institution. Another prohibition is that HCBS funding cannot be used to pay for room and board. In other words, the funding is for services provided outside of an institution and not for housing and food.

Although Congress has had many opportunities to further restrict HCBS funding in Medicaid law, it has apparently chosen not to do so. The standards that CMS proposes, however, would limit HCBS funding to settings that meet the narrow CMS definition of "community". 

"Rebuttable Presumptions"

 The rules propose a "rebuttable presumption" that a setting is not a home and community-based setting if "it 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". In addition, the Secretary of U.S. Health and Human Services (HHS) has the power to determine unspecified other "qualities of an institutional setting" that do not qualify as Home and Community-based settings.

One can assume that a "rebuttable presumption" is difficult to overcome.  The proposed rules do not make clear who is entitled to rebut the presumption (an individual or the person's guardian? the state?) and how and where do they do this? If the Secretary of HHS can apply standards that involve not only the setting in which one receives services but also the qualities of settings in close proximity and also has the power to determine unspecified other "qualities of an institutional setting", it would seem virtually impossible for any stakeholder to make a case that something is "community enough" or not "too institutional" to warrant HCBS funding.

The rule provides such stringent, inflexible discretion to find HCBS eligibility, that the "rebuttable presumption" opportunity is an empty one. Do the "unspecified qualities" also have a rebuttable presumption of not meeting the definition of "Community"? How does the Secretary of HHS determine the "appropriateness" of a setting absent knowledge of the needs of the individual? It would make more sense  to have a "rebuttable presumption" that the decisions reached by a person-centered planning team determine the appropriateness of services and the most integrated setting appropriate to the needs of the individual.

Community and Institutional Characteristics

In the proposed rules, CMS narrows the definition of "community" while at the same time expanding the definition of an institution. It defines the "characteristics of an institution" in order to restrict funding for settings considered to be too "institutional." This restriction will make it more difficult for many individuals to access services in settings appropriate to their needs. Medicaid law for Home and Community Based Services does not restrict services or settings in which services are provided to those without characteristics of an institution. The Supreme Court in Olmstead in interpreting the ADA found 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.” If institutions are not prohibited, why would CMS limit community services and settings based on their "institutional qualities"?


Harmful effects of CMS rules

Before moving forward on the implementation of these rules, CMS needs to assess the harm they might inflict. In Michigan, there are many innovative programs and residential settings that were initiated by families and exist partly because Medicaid waivers have been flexible enough to fund services for people choosing to participate in these programs. Many of these programs would not meet the stringent definition of "community", because they are specialized for people with more severe disabilities and serve them in congregate (though certainly not isolated) settings. They are very much a part of their communities, with strong financial and moral support from families, religious organizations, local civic organizations, and other community groups. Taking away HCBS waiver funding could jeopardize these programs or force them to start accepting only private-pay participants. Programs such as these should be models for the innovative ways they serve people with severe disabilities, for the ways they fund programs by marshaling  community and public resources, and for innovative ways of building communities for the people they serve, building on relationships with families and friends and expanding into the larger community in ways beneficial to both the community and the individuals served.
 
************
 
Although the comment period for the CMS proposed rules ended a year ago, that does not mean that you have to wait passively for a decision to come down from the federal government on whether these rules will be implemented as written. If you object to these rules, send an email to Kathy Poisal at CMS and to your U.S. Representative and U.S. Senators. These rules do not have to be approved by Congress, but objections by your legislators in Congress can have an effect on whether CMS choses to implement the rules as written.  Congress can also hold hearings, ask that the CMS open another period for comment, and legislators can make their own opinions known, such as in this letter from Michigan U.S. Representative Bill Huizenga, and another letter from a Congressman in California.

Other suggestions: Make the subject line of your email a pithy description of the subject you are communicating such as "Oppose CMS rules CMS-2249-P2" or "Comments on CMS-2249-P2" . Make sure to include the reference to CMS-2249-P2 in the body of your email to identify the specific proposals you are commenting on. U.S. legislators usually respond to hand-written, personal letters from constituents, but these should be faxed and not sent by U. S. mail. (Because of security precautions, mail sent through the U.S. postal service can take weeks before it reaches a legislator's office.) Be brief and to the point. If you have a family member or someone you know who might be affected by these rules, say so.

Here is a link to the Federal Register for May 3rd, 2012 that includes the proposed rules CMS-2249-P2.

Other comments on the rules can be found here and here .

Other reasons to object to CMS-2249-P2: they interfere with the authority of guardians ; they undermine decision-making by the person-centered planning team; and they limit choice for all as protected by law.

VOR on Defining "Community"

[VOR is the only national organization that supports a full array of residential and support options for people with developmental and intellectual disabilities. This is one of the policy papers that members of VOR are distributing to Congress this week for its Washington Initiative.]

June 10, 2013 
Integration or Isolation? 
Defining “Community” Beyond Bricks and Mortar

VOR calls on Congress to investigate the absurd federal policies which define “integration” and “community” so narrowly that peoples’ homes, good care, happiness and safety are threatened. 

The Department of Justice’s (DOJ) regulations reasonably state that the Americans with Disabilities Act’s (ADA) “integration mandate” requires that “individuals with disabilities interact with non-disabled persons to the fullest extent possible.” Unfortunately, DOJ and other federally-funded entities have enforced this “integration mandate” irrationally to mean little or no interaction with other disabled persons, even if that results in less interaction with non-disabled persons! This approach violates the careful balance the Supreme Court reached in the Olmstead case, which interpreted the ADA to require community integration if people were capable of living in the community, but reserved the individual right to remain in congregate care and specifically recognized that some people needed such care. Sadly, the result of this ideological approach has been the forced removal of thousands of individuals with intellectual, developmental and other disabilities from true communities and into isolation.
 
Why must disabled people endure a different standard of community than other populations and society in general? Seniors enjoy the companionship and shared interests in retirement communities and college students find community in dormitory living. In a similar situation involving people with hearing disabilities, the U.S. Department of Housing and Urban Development (HUD) is challenging a housing community in Arizona that was designed around the specific needs of deaf and hard-of-hearing seniors: 

“Designed by a deaf architect to fit the needs of the deaf, its units have video phones and lights that flash when the phone or the doorbell rings. Wiring in common areas pipes announcements made through loudspeakers into residents’ hearing aids. The complex, meant to foster a sense of community among residents who use sign language to communicate and socialize, was . . .one that advocates for the disabled hoped would be a model for similar projects.” (“A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination,” New York Times (April 28, 2013))

HUD is alleging federal discrimination on the grounds that the housing complex serves too many deaf and hard of hearing people and not enough people without hearing disabilities. 

Congress must investigate and act. Integration policies are forcing many disabled people into isolation and dangerous situations and the blind fervor in which these actions are being pursued is frightening. People with all types of disabilities – intellectual, developmental, autism, and hard of hearing – have been removed or face removal from their homes simply because they live with other disabled people:

• DOJ has pursued 40 actions to enforce the ADA’s Integration mandate to require that “individuals with disabilities to interact with non-disabled persons to the fullest extent possible.” Most of these cases aim to close ICFs/IID or other facilities.
• The HHS Centers for Medicare & Medicaid Services (CMS) has proposed new regulations which, if adopted, will change how “community” is defined for people with I/DD in the Social Security Act’s Medicaid Home and Community-Based Services (HCBS) programs (see, CMS-2249-P2, May 3, 2012). The proposed rule would require the HHS Secretary to begin with a “rebuttable presumption” that certain settings are not “community,” including homes on or near public and private facility campuses and “disability-specific housing complex[es].” This proposal threatens innovative housing complexes and planned communities for people with I/DD, autism, and other disabilities.
• The National Council on Disability (NCD) defines any home of 4 or more people as an isolated institution that should be closed (“Deinstitutionalization: Unfinished Business,” October 2012).

Case Studies: Real people are being impacted

Mary: “I’m not lonely anymore.” That is how Mary describes her new living situation. Mary has a hearing impairment and she resides in a subsidized housing complex with 69 other residents who are also deaf or hard-of-hearing. 

Integrated or isolated?
According to HUD, Mary is isolated because she lives in close proximity to disabled people (New York Times (April 28, 2013)).

Mark has multiple disabilities, including autism, is prone to wandering out of his home but has little sense of danger and is prone to outbursts. His mother keeps buzzers around her home to keep Mark safe. “If he goes out of the door, then we and God and everyone else can hear it because it is so loud,” she said. “But it is exhausting. It is intensely stressful and it’s very exhausting.”
 
Integrated or isolated?   
According to DOJ and some HHS agencies, Mark is integrated because he is surrounded by nondisabled people.

Brian, age 42, experiences dangerous behaviors. When living in his family home, he injured every family member and they replaced hundreds of windows. Brian was expelled from four community homes in two states before receiving appropriate care in a state-operated Medicaid-certified facility (“ICF/IID”). 

Integrated or isolated?
The DOJ and DD Act programs support the closure of Brian’s ICF/IID home, calling it isolated because he shares his home with other disabled people, and instead support his return to a more “integrated” community where he would be with nondisabled people.

Conclusion 
 
Although it is nearly impossible to develop a bright line rule for what constitutes “integration” versus “isolation,” our federal government persists in the implementation of a hard line rule relating only to the number of disabled people living in close proximity. Such a narrow interpretation fails to appreciate the true community that exists in most specialized housing options for people with disabilities, as well as actual interaction with nondisabled people. Many ICF/IID homes, for example, especially those in urban areas, have ratios as high as 4 volunteers to each resident. Other ICFs/IID share campuses with community groups, school groups, host special events, and otherwise open campuses to many visitors in any given day. In every way, these and similar housing arrangements for disabled people are integrated; they are “community.” 

Read the full document here with footnotes

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.

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.

Comment #4 (CMS-2249-P2): Defining Home and Community Based Settings

CMS has not given a sufficient explanation here of why the agency has decided that it should restrict funding to settings with “institutional qualities” as defined by these rules and at the discretion of the Secretary of Health and Human Services.

This language is included in the proposed rules acknowledging that institutional care in nursing facilities, intermediate care facilities for the mentally retarded, hospitals for mental disease, and other hospital settings is not prohibited:
 
We note that this proposal in no way preempts broad Medicaid requirements, such as an individual's right to obtain services from any willing and qualified provider of a service. We further note that States are not prohibited from funding institutional care under Medicaid. The exclusion of these settings from HCBS waivers and from the State plan HCBS benefit does not limit the availability of institutional and facility-based care for those individuals who require long-term services and supports, and who freely choose to receive services in those settings… 
 
The funding streams for institutions are different from those for HCBS waiver settings and waiver services are by definition alternatives to institutional care. There is nothing, however, in the ADA, the Olmstead decision, or Medicaid law that places restrictions on HCBS settings, based solely on an opinion that a service or setting has institutional qualities.

Comment #3 (CMS-2249-P2): Guardianship and HCBS Medicaid Waivers

Individual Representatives and Guardianship
In other attempts to change the rules for HCBS waivers by CMS, there was no mention of guardians or an acknowledgement that some people are not able to make decisions for themselves. These proposed rules are better in that they mention a role for guardians. The proposed rules recognize representation through state guardianship laws and other methods:

When an individual is not capable of giving consent, or requires assistance in making decisions regarding his or her care, the individual may be assisted or represented by another person. Section 1915(i)(2) of the Act defines the term “individual's representative” by listing certain examples, but also provides that “* * * any other individual who is authorized to represent the individual” may be included. We believe that “authorized” refers to State rules concerning guardians, legal representatives, power of attorney, or persons of other status recognized under State law or under the policies of the State Medicaid program.

This paragraph, however, is troubling:

States should ensure that the representatives conform to good practice concerning free choice of the individual, and assess for abuse or excessive control. States should also ensure that the person-centered planning process continues to be focused on the individual with HCBS support needs and his or her preferences and goals, and supports are provided so the individual can meaningfully participate and direct the process to the maximum extent possible. We are proposing to provide that the State may not refuse to recognize an authorized representative that the individual chooses, unless the State discovers and can document evidence that the representative is not acting in the best interest of the individual or cannot perform the required functions.

In Michigan, guardianship is under the jurisdiction of the probate court, not the executive branch of state government or the agencies that oversee Medicaid. There have been several attempts to undermine the authority of guardians with proposed guidelines and policy statements from the Michigan Department of Community Health. The MDCH, however, may not usurp the authority of the Probate Court to appoint and monitor guardianships, although anyone can challenge a guardianship in court and ask the probate judge to review it. When a guardian is suspected of neglecting or abusing a ward, he or she may be reported to Adult Protective Services and the probate court. When a Community Mental Health agency has evidence that the guardian is not acting in the best interest of the individual, that issue may also be reported to the court, or the agency may go through appeals processes that are also available to the guardian to establish the appropriateness of services for the individual.

If the agency overseeing Medicaid or the provision of waiver services to the individual were allowed to make judgments about the competence or motives of the guardian, this would be an egregious conflict of interest. Guardians, most of whom are parents, siblings, or other family members, can be the most tenacious defenders of the rights of their family members. In fulfilling their responsibilities as guardians they are in the best position to challenge the decisions of agencies that the guardian feels are not acting in the best interests of their wards. Allowing the agency to make judgments on their role as guardian sets them up for intimidation and undermines their ability to meet their responsibilities as guardians.

This needs to be clarified to make sure that state laws regarding guardianship and the jurisdiction of the courts is respected. Furthermore, guardians are appointed by the court, not chosen by the individual, although in my experience the court does try to determine the preferences of the individual.  Many people are limited in their ability to make these kinds of choices, which is why they need guardianship in the first place.

Comment #2 (CMS-2249-P2): Choice for all - It's the Law

The law is on the side of maintaining a full range of options and services covered by the HCBS waivers:
 

• 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 particular 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" or designed around an individual's diagnosis, or housing complexes of any particular size, if these settings are appropriate to the needs of the individual.
   
• Medicaid law for the waiver programs narrowly defines institutional care as care received in a nursing facility, an intermediate care facility for the mentally retarded, a hospital for mental diseases, or other hospital settings. It does not limit or define community settings in terms of “institutional qualities”. 

Whether it is proper for CMS in proposed rule changes to reinterpret and limit access to community settings that have “institutional qualities” is highly questionable.

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 limiting options or making them harder to access because some people might find them objectionable.

Comment #1 (CMS-2249-P2): CMS proposed rules for Medicaid Waivers

Comments on proposed federal rules on Home and Community Based Services waivers are due on Monday, July 2, 2012. (Michigan's HCBS Medicaid waiver for people with developmental disabilities is called the Habilitation Supports Waiver.) Here is a link to the comments that I submitted on the government website today. The rules are proposed by the Centers for Medicare and Medicaid Services (CMS), the federal agency that regulates Medicare and Medicaid. If you are submitting testimony, make sure you identity the rules with the code CMS-2249-P2. And good luck with the government Website, Regulations.gov . I find it confusing and frustrating to use, but I did manage to get my comments submitted, so you can too!

Here is my first comment:

I am the parent of two adult sons with profound developmental disabilities who live in a group home in Ypsilanti, Michigan. They are 35 and 27 years old and are supported in part by Habilitation Supports Waivers, Michigan’s version of the Medicaid 1915(c) Home and Community Based Services Waiver....

The CMS proposed rule changes cover a variety of Medicaid waiver programs. There was a rule for the new 1915 (i) waiver program that I commented on with the assumption that its provisions are basic principles that also apply to the 1915 (c) [for people with DD] and other waiver programs. I was most interested in the proposed rules attempting to define the characteristics of home and community based settings as opposed to institutional settings.

Past attempts [see theddnewsblog posts from 5/25/11 to 7/7/11] by CMS to define characteristics of community-based settings have been contentious. Because of the wide range of needs within the population of people with disabilities, the use of these waivers must be highly individualized and CMS rules need to be sensitive to a full range of disabilities. Some advocacy organizations, especially larger groups that receive funding through a variety of federal government programs, have tried to impose an ideology of full inclusion on all people with disabilities that is simply unworkable and even harmful for people like my sons.

The CMS should be neutral in these ideological battles and write rules that follow the law and allow for individual differences. This is especially important when states and the federal government are looking for any and all ways to reduce the costs of services to people with severe disabilities. Unfortunately, the advocacy organizations often claim that specialized programs are by their nature wrong and discriminatory and give cover to state and federal governments that close programs "because it is the right thing to do”.