Comments on Guardianship and Supported Decision Making to the National Council on Disability

Supported Decision Making or SDM is a national intiative to reform or replace court appointed guardianship. It is described here as "a process in which adults who need assistance with decision-making... receive the help they need and want to understand the situations and choices they face, so they can make life decisions for themselves, without the need for undue or overbroad guardianship".

The following are comments I made to the National Council on Disability (NCD) during a panel discussion on guardianship and Supported Decision Making on 2/11/16.

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My name is Jill Barker and I am from Ann Arbor, Michigan. I have two adult sons who have profound physical and intellectual disabilities. Danny is 39 years old and Ian is 31 years old. They both function at about the level of a six-month old infant, and are totally dependent on other people for their care and well being. My husband and I are their plenary co-guardians which gives us the tools we need to assure that their rights are protected, that they receive the services they need, and that they are treated with dignity and respect. We monitor their care, participate in decisions affecting them, and intervene when their interests are being neglected or ignored.

I have read a great deal about Supported Decision Making. The core belief espoused by its advocates is that all people with developmental and intellectual disabilities must be presumed to be capable of making decisions for themselves. What is rarely acknowledged is that there must also be a mechanism to overcome this presumption when there is evidence that a person is unable to make or communicate decisions in some or all aspects of their lives. This lack of capacity is likely to put the person at substantial risk of neglect, abuse, or exploitation.  Guardianship is designed to be that mechanism.

I would also add that people with severe or profound disabilities who lack the capacity to make decisions and do not have a guardian or other legal representative to protect them, are likely to be at the mercy of public agencies that are strapped for cash and are focused on reducing the cost and number of services they provide to people with DD.

Many advocates for SDM state explicitly that their goal is to eliminate guardianship. Others state that this is not what they are trying to do, but their words and actions show that they intend to make guardianship as difficult to obtain as possible. Advocacy organizations espousing SDM are also poised to obtain funding from federal agencies to promote Supported Decision Making and as such are in a poor position to claim that their only interests are the rights of people with disabilities.

In Virginia and Missouri, there have been recommendations to make Supported Decision Making a part of their guardianship laws and to make it mandatory for a guardian to espouse the belief that their family member is capable of making decisions, even when a court of law has determined otherwise. This is an outrageous imposition on people with disabilities and their families.

If Supported Decision Making training is found to be valuable by individuals and families, then, by all means, they should have access to it, but this should be strictly voluntary. When an individual or guardian is involved in a supported decision making process, it should be made clear from the outset that all decisions are ultimately up to the individual and family, or a court-appointed guardian, when there is one. In any federally-funded program there should also be protections in place to protect the privacy of the individual, prevent coercion from having choices imposed on the individual, and to prevent unwanted intrusion into their personal lives.

Thank your for your consideration of my comments.

Talking points for protecting DD individual housing choices

These talking points are found on the website of the Wisconsin Council for the Deaf and Hard of Hearing. They are in defense of a senior housing project in Arizona called Apache ASL Trails, a project specially designed for seniors who are deaf and use American Sign Language to communicate. The housing project received a complaint from the U.S. Department of  Housing and Urban Development (HUD) that they were discriminating against people who were not deaf and therefore in violation of HUD anti-discrimination policies. HUD finally backed down and withdrew its complaint.

This case parallels in many ways the plight of people with disabilities who live in or wish to live in congregate housing and planned communities that are freely chosen by the individuals or their  legal guardians, and meet the unique needs of the people living in these settings.

Many federally-funded advocacy organizations and the Centers for Medicare and Medicaid Services have insisted that funding through Medicaid waivers and state plan services to people with developmental and other disabilities may be restricted if the settings in which people live are too "institutional" and not  "community" enough as defined by the CMS. [CMS is the federal agency that regulates Medicare and Medicaid.] Influential advocacy groups and the National Council on Disability have gone as far as defining as "institutional" any setting where more than 3 people with disabilities live or receive services together.

Final rules issued by the CMS on Home and Community Based services and settings in January 2014 were modified from earlier versions to answer criticisms from many groups [See the Community Choice Coalition] and individuals who believe that there are many ways of living in a community. Congregate settings are not inherently discriminatory and do not violate the often misinterpreted 1999 Supreme Court Olmstead decision .

Even facilities that are explicitly defined as institutions (Intermediate Care Facilities for people with Intellectual and Developmental Disabilities,  nursing homes, mental hospitals, and other hospital settings) were not considered inherently discriminatory by the Supreme Court in the Olmstead decision when they are  necessary for people who cannot successfully live in community settings. Individuals may not be removed from institutional care to community care if they do not agree to it. 

The legal underpinning for the talking points on Apache ASL Trails is section 504 of the Rehabilitation Act of 1973: 

"No otherwise qualified individual with a disability in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any  program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency. . ."  29 U.S.C. 794 

HUD rules regarding housing discrimination do not justify disqualifying projects such as Apache ASL Trails:

• 24 C.F.R. 8.4(b)(1)(iv) allows recipients of Federal funds to provide different or separate housing to individuals with handicaps, or to any class of individuals with handicaps, if such action is necessary to provide qualified individuals with handicaps with housing that is as effective as the housing that is provided to others. 
• 24 C.F.R. 8.27 requires that accessible units be marketed to individuals who need the accessibility features of the units, and that the accessible units first be offered to individuals who need the accessibility features of the unit. 
• 24 C.F.R. 8.22(c) allows HUD to approve a higher percentage of accessible units than the minimum percentages required by the regulations. This approval can be based on any available current data or evidence of a need for a higher percentage, and the regulations do not prohibit a property from making all of its units accessible to individuals with hearing or vision impairments.

According to the Talking Points:

• HUD’s insistence upon an arbitrary 25% limit on the number of accessible units that can be rented to people with disabilities who need the accessible features has no basis in Section 504 or its implementing regulations and would in fact be a violation of 24 C.F.R. 8.27. 
• Any quota, by definition, violates 24 C.F.R. 8.27 and discriminates against individuals with disabilities. The protections of federal disability rights laws are not first come, first served.

CMS and other federal agencies are also subject to Section 504 anti-discrimination rules, regardless of an agency's attempts to use anti-discrimination law to limit access to benefits and housing choices that the agencies and many advocacy groups would like to eliminate.

HUD raises discrimination concerns over housing project for the deaf

A housing complex for deaf seniors in Tempe, Arizona, has run into problems with the federal Department of Housing and Urban Development (HUD). Arizona has allocated money from HUD to help pay for the project, but HUD has raised questions about the housing complex on the basis that it discriminates against people who are not deaf.

According to an article in the New York Times entitled "A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination" by Fernanda Santos, 4/28/13, the project called  Apache ASL [American Sign Language] Trails is specifically designed to meet the needs of people who are deaf and use American Sign Language as their mode of communication: "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 design fosters a sense of community among its residents and has the full support of the Arizona Department of Housing that hoped it would be a model for similar projects.

Other advocates say that HUD's finding of discrimination might "complicate" other projects in which federal money would be used to build housing for adults with special needs: "Already, the Southwest Autism Research and Resource Center, based in Phoenix, has scrapped plans to use federal grants to help pay for a development designed for autistic adults, opting instead to pursue private financing."

HUD's adherence to convoluted and ideologically motivated reasoning has angered advocacy groups for people who are deaf and hard of hearing across the country. In a letter signed by 75 organizations, the National Association for the Deaf (NAD) writes, "In a nutshell, your agency, HUD, is forcing deaf and hard of hearing individuals to only live according to an ideological vision of forced integration. The tragic irony is that such an ideology has punished deaf and hard of hearing individuals seeking a higher quality of life and a safer place to live and has actually resulted in the forced isolation of individuals who are deaf and hard of hearing."

Ironically, Jeff Rosen, who is deaf and the chairman of the National Council on Disability, which advises the federal government on disability policy, "…said these types of discussions could help the government better understand the challenges faced by groups of disabled people like the deaf, who do not often have the opportunity to live in a community that they feel is 'appropriate and fit for them.'"  Although the NCD has not taken a position on this particular issue, it recently published a report in support of deinstitutionalization of all people with developmental disabilities. 

The NCD, in a monumental display of overreach by the agency and advocacy groups supporting it,  declared that the term "institution" should be redefined as any congregate setting of 4 or more people "who do not choose to live together", ignoring the reality that many people with DD are not able to make such choices and rely instead on family members and guardians to decide for them. Furthermore, limiting settings based on the number of people is not mandated by the Americans with Disabilities Act or the 1999 Supreme Court Olmstead decision on discrimination. Strong objections to the NCD report have so far not moved the the agency to retract or modify its position on accessibility to a full spectrum of specialized settings by people who have developmental disabilities. 

According to the New York Times article, Mr. Rosen says, “Our understanding of discrimination and disability policies is evolving.” Let's hope so. 

NCD Report on Deinstitutionalizatioin : Part 4

The National Council on Disability met today for its quarterly meeting in Washington, D.C. Anyone calling in to the NCD can give comments to the Council. Check on their schedule of meetings and agenda. Some public comment periods are open only for specified topics and others are unrestricted. 

These comments are about the NCD's Report on Deinstitutionalization and the NCD's failure to acknowledge or explain opposing views.

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Comments to the National Council on Disability
April 23, 2013

Jill Barker
Ann Arbor, Michigan
The DD News Blog

You have heard from individuals who opposed the NCD report on "Deinstitutionalization: Unfinished Business". I think that the NCD needs to do more to include opposing views on this and other subjects from people with severe developmental disabilities and their families:

• I have two adult sons with profound intellectual and developmental disabilities. My sons and people like them appear to be invisible to the NCD. When the NCD redefines an institution as any setting with 4 or more individuals who did not choose to live together, it does not acknowledge that there are people who cannot make such choices. My husband and I, as our sons' co-guardians, make these choices for them because both our boys are unable to exercise their rights on their own behalf. We make these choices based on what we know to be their preferences and needs and not without considerable thought to how their lives will be affected.
• The NCD report on deinstitutionalization makes no attempt to assess how the recommended policies will affect people with severe disabilities. How many 10's of thousands of people will be displaced from their homes? How disruptive will policies be to the lives of people with severe disabilities and their families when they lead to the elimination of services and settings that are not "fully integrated" (as defined by the NCD)? In writing the report, no one bothered to ask. In interviews with individuals with disabilities, only those who reinforced the views of the NCD were included in the report. No attempt was made to include opposing viewpoints or explain the reasons for them. 
• Who stands to benefit from policies that push the ideology of full inclusion to its illogical extreme? Such policies provide cover for states that seek to cut costs while being heralded as promoting freedom for individuals with disabilities. How many people will be "liberated" from services and residential options they need to survive? By promoting residences of fewer than 6 people, in Michigan at least, this will relieve the State of having to license and regulate living situations. In closing larger facilities, there is no guarantee that services will be financially sustainable for people with the most severe disabilities or that savings will go to expand community services.

By focusing in this report so narrowly on eliminating options for people with severe disabilities, the NCD has missed an opportunity to call attention to the problems in community care and solutions that include a broader spectrum of ideas and opinions.

NCD Report on Deinstitutionalization: Part 3

NCD report documents significant problems in community care

Although the National Council on Disability report on Deinstitutionalization places emphasis on the mechanics of closing state-operated facilities for people with DD, it also reveals, in spite of itself, significant problems with community care that are especially alarming for families of people who currently live in those facilities. I'm sure the NCD would claim that these problems can be overcome with careful planning or that the benefits of living in "the community" outweigh the "horrors" of institutional living. Nevertheless, the barriers to safe and adequate care in the community  are significant.

from the NCD report:

• (page 27) The current fiscal constraints faced by states compound the challenge of developing and maintaining a strong community-based service system. Some states are cutting back on the amount of services they provide to each recipient or are limiting the number of service recipients.
• (page 34) The resources dedicated to people with ID/DD vary significantly across states, as does the quality of both institutional and community-based services. In some states the system works relatively well, while in others it takes a lot of ingenuity and commitment on the part of the family to obtain high-quality community services.
• (page 35) A community-based service system depends on the availability of affordable, usable housing, which is typically scarce. …Thus, people are often put on waiting lists or remain in their childhood homes far longer than they desire. One’s housing options should not determine what services one gets. All these factors need to be addressed in the plan.
• (page 35) Under the Medicaid HCBS waiver program, states have considerable flexibility in determining the type of services they will provide and the number of people to whom they will provide the services. Many states have long waiting lists for services. Although current institution residents are guaranteed a space in the community and are not placed on a waiting list, the existence of waiting lists for people who are not in institutions casts doubt on a state’s commitment to community living.
• (page 35) When people with disabilities are disbursed widely in a community, as is desirable, specialized health care and dental services may not be available locally. In 49 states, Medicaid does not pay for routine dental care. Furthermore, many service providers are unwilling to accept Medicaid reimbursement, which they believe is inadequate, further limiting the availability of some practitioners. [emphasis added]
• (page 47) In 2009, an estimated 122,000 people in the United States were on waiting lists for residential services. A state may modify the limit with permission from the Centers for Medicare and Medicaid Services (CMS).
• (page 59) “Our system of community-based supports is not perfect. It remains underfunded, provider wages and training are inadequate, and we must improve client safety in the system. However, Oregonians with disabilities have some things today they didn’t have 30 years ago at Fairview: freedom, dignity and a sense of belonging.” Sara Geiser, Oregon State Representative and a member of the National Council on Disability

As the parent of two adult sons who function at the level of 6-12 month old infants, and live in a 6-bed group home, I know from experience  that parents often fill in gaps in services. We pay for our sons to attend an activity program 3 days per week, we bring them home for part of the day most weekends, and we monitor the group home and their medical care closely. For my older son, we pay $1,000 every time he gets his teeth cleaned, because he needs to be sedated and we have not found a dentist who is willing to do this and accept Medicaid payments. For a number of years my older son experienced the devastating effect of poorly trained staff, high staff turnover, poor management, and inadequate quality controls in his group home. For those who live in unlicensed smaller settings, people with severe disabilities often suffer from neglect and exploitation that results from a lack of supervision and sufficient oversight of the services they receive. We are fortunate that we can still oversee the care of our sons. Many other parents cannot and fear of the “system” that is supposed to care for their children is pervasive. 

NCD Report on Deinstitutionalization: Part 2

“Two Key Truths….”

In its report on Deinstitutionalization, the National Council on Disability states that "two key truths” emerge as the underpinnings for the Americans with Disabilities Act, the 1999 Olmstead Supreme Court decision, and for the rationale to close institutions:

1. People with ID/DD [Intellectual and Developmental Disabilities] have a legal right to live in the community and to receive necessary services and supports. 
2. Life in the community provides opportunities for dignity, freedom, choice, and a sense of belonging that are not possible in an institutional environment.

The first “truth” is only half true. 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.

In dismissing the idea that anyone needs an institutional placement, the NCD report (page 56) says that, “Some of those who oppose institutional closure claim that some people with ID/DD are so severely disabled that they cannot handle or benefit from community living and that institutions are the most integrated setting appropriate to their needs.” The whole truth is that those who oppose institutional closure include the Supreme Court Justices who stated in the Olmstead decision:

“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.

And

“As already observed by the majority, the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person — recognizing on a case-by-case basis, that setting may be an institution" [quoting VOR’s Amici Curiae brief]

The second “truth”, that opportunities for dignity, freedom, choice, and a sense of belonging are not possible in an institutional environment, is an assertion that cannot be proved or disproved. It is based on the subjective experience of a wide range of individuals, many of whom are unable to comprehend such abstractions or express their opinion about them.

The underpinnings of the NCD interpretation of the Americans with Disabilities Act and the Olmstead decision are fragile to non-existent as is their rationale for wanting to close all institutions.

NCD Report on Deinstitutionalization: Part 1

From the NCD Web site: The National Council on Disability (NCD) is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Presidential appointees, an Executive Director appointed by the Chairman, and twelve, full-time professional staff.

The National Council on Disability issued a report in October 2012 called "Deinstitutionalization: Unfinished Business". The report is a companion paper to an NCD Deinstitutionalization Toolkit designed to provide a how-to manual for all those interested in institutional closures.

What's wrong with this picture? The National Council on Disability is a federally funded agency that is using federal money to mount a campaign to eliminate another federal program that NCD members don't like. 

Intermediate Care Facilities for people with developmental disabilities (ICF/DD) are funded and regulated by Medicaid. They are considered to be institutions under Medicaid law, along with nursing homes, mental hospitals, and other hospital settings. Some ICFs are larger facilities, but they may be as small as 4-bed state-operated group  homes. They house some of the most severely disabled adults, including people who are medically fragile or have behaviors that make them very difficult to care for in community settings.  ICFs/DD come with an array of services that are often not routinely available elsewhere (for instance, nursing services, dental care, and other specialities). Funding covers total care and is not fragmented the way it is in most community settings.

Residents of institutions have protections against abuse, neglect, and exploitation as well as the right to continue to receive institutional care, even if it conflicts with the ideology of advocacy organizations that don't want them to have this choice.

Although the NCD report emphasizes closing larger facilities, it arbitrarily (and without any specific authority to do so) redefines the word "institution" to include any setting that is "a facility of four or more people who did not choose to live together"(emphasis added). It appears the NCD is laying the groundwork for the elimination of a broad spectrum of living situations currently available to the DD population.

By calling for the closure of all larger facilities, the NCD misinforms the public on the intent of the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision with regard to institutional care for people with severe disabilities. It places at risk people who are the most vulnerable and difficult to care for. 

More Information:

Link to the NCD report.

My comments on the NCD report.

Comments from VOR, a national organization that supports a full array of residential and service options for people with ID/DD.

Comments from a Massachusetts blog, "The National Council on Disability can’t be serious"

Send comments to the National Council on Disabilities at PublicComment@ncd.gov

Because the NCD is a federal agency with oversight by the U.S. Congress, send copies of you comments to President Obama, your U.S. Senators (Carl Levin and Debbie Stabenow in Michigan) and your U.S. Representative (find here)