From the Website for Benjamin's Hope in Ottawa County, Michigan:
Benjamin's Hope will be a first of its kind community model designed
to address the multifaceted needs of individuals and families affected
by autism and developmental disability.
An emerging, interactive community where people with extraordinary needs will realize a future of meaning, security and hope.
Our mission is to be an embracing natural setting where people with
disability and the community gather for Christ-centered fellowship,
treatment, housing and meaningful work.
UPDATE: 7/15/13 The ARC of the United States has given Governor Pat Quinn The Advocacy Matters! award, acknowledging his leadership in closing state institutions and "rebalancing" the disability system. “This is a Governor that does things for the right reasons and is
relentless in his determination to put people with disabilities before
politics,” says Tony Paulauski [see below], executive director of The Arc of
Illinois. “Governor Quinn’s vision in rebalancing the disability system
is a model for the nation and one that all Illinoisans can be proud of.”
Many states are closing facilities for people with severe developmental and intellectual disabilities to the delight of deinstitutionalization advocates and to the dismay of the families of people who reside in these facilities. Families of residents, when asked, overwhelmingly support these specialized facilities for their very severely involved family members. For the most part, families are summarily dismissed by advocates as dinosaurs in a bright new age of inclusion and transformed systems of community care.
Having experienced "the community" for my sons with profound intellectual and developmental disabilities, and knowing other parents in the same situation, I can attest to the fact that living in "the community" does not automatically solve the problems that arise when living with a disability. The system of care is fragmented and people seeking help need to know what to ask for. The availability of services is often a well-kept secret from potential recipients. It can take years for families with the stamina for sustained struggle to cobble together the services needed for a safe and fulfilling life for for their loved one. Disruptions in services and the unavailability of residential options to meet changing needs are the norm, not an aberration. Needless to say, community care should be offered as a choice for people with disabilities, but it has a long way to go to fulfill its promise.
If we listen to families, we can better understand their resistance to community placements for their loved ones and their distrust of the promise of an improved life. Dave Kassel, in The Real Choices in Care Blog, does listen to families and has catalogued their experiences with facility closures in Illinois and other states. In Illinois families filed suit in February 2013 to stop the state from moving residents out of Murray Center in Centralia, IL, based partly on the state's record with closing another center in Jacksonville, IL, last year and on undue pressure applied to current residents of Murray Center.
"…The families alleged that the administration of Governor Pat Quinn had acted in such undue haste in moving some 30 residents out of the former Jacksonville Center in a matter of days in late 2012 that many residents were hospitalized or arrested, and parents’ rights were trampled….The Jacksonville closure process was touted by Governor Quinn as a 'milestone' in care for the developmentally disabled, but characterized by Murray Parents Association President Rita Winkeler as 'horrible.'" More from Dave Kassel:
...The Murray parents’ complaint indicates that the transfers that subsequently began from the Murray Center resulted this past Memorial Day in a hospitalization and a near arrest in one case and the placement of a resident in a home under construction in another. Laurie Stengler, a member of the Murray parents group, told me that in one of the Memorial Day incidents, two residents of the Murray Center had been placed together in a group home against the advice of the Murray staff, who had noted that one of the residents consistently behaved aggressively toward the other.
'They did it anyway,' Stengler said, noting that there was just one staff member on duty at the group home when the aggressive resident pushed the other resident down and began kicking that person in the face. The victim of the attack had to be taken to the hospital.
Other news sources have questioned the quality of care in community homes that Murray Center residents are being offered. This is from WILY radio in Centralia:
...[One home], despite passing an inspection, was found Tuesday to have multiple leaks in the roof, both over the bedrooms and the living room and kitchen area. Two former Murray residents moved into the home one week earlier. Both are female, one is in a wheelchair and the other uses a walker. Neither participate in a day program outside of the home.
It was then discovered Wednesday that an employee of the CILA [Community Integrated Living Arrangement] company was being charged in Marion County Court with felony abuse of a disabled person in his care, a charge that stemmed from an alleged incident while the worker was employed with another private care provider in Centralia.
On the handling of closures by the Quinn administration from Dave Kassel:
...The federal court complaint also contends that the Quinn administration is trying to close all of the remaining developmental centers in Illinois because it is facing a $13 billion budget deficit. At the same time, the administration made $1.6 billion in Medicaid cuts in June, which will further hamper the ability of the community system to provide the same services as the developmental centers.
According to one news account, even as the Murray Center was being readied for closure, corporate providers in Illinois were informed by the state in April that payments for residential and other services would be delayed by up to four months. The state, meanwhile, owes those providers hundreds of millions of dollars in unpaid bills.
The ARC of Illinois has been a chief proponent of facility closures in the state. In an editorial that appeared in many Illinois newspapers, Tony Palauski, the Executive Director, offered families platitudes ("The rebalancing of the developmental disability system is a life-enhancing process that offers promise, freedom and opportunity for people with disabilities.") and euphemisms such as using the term "rebalancing", when "Robbing Peter to pay Paul" would be a more apt description of the process. Without addressing any of the concerns of the family group from Murray, he brushes them off with "…Murray is going to close, and stall tactics will only hurt the residents."
Here is a response from Rita Winkeler from the Murray Parent's Association.
******************************* The judge in the Murray Center lawsuit issued a restraining order against the state to discontinue moving residents out of the facility. A hearing will be held on July 23, 2013. The federal complaint alleges violations of federal Americans with Disabilities Act and the Medicaid and Civil Rights laws.
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.
Government-funded advocates from all over the country are intent on liberating people from institutions that provide them with the care they need to survive and whose families do not want them to leave. The same advocates have decided that people who do not live in institutions are being oppressed by specialized services that expose them to too many people with disabilities. In their ideological fervor, they are helping states eliminate and limit access to programs and residential options for people with DD. I assume the states could not be happier to have the help of advocates in closing these relatively expensive programs.
Here's something that might distract these advocates for awhile from undermining the infrastructure of services available to people with DD: Put your efforts into untangling the mess that is Medicaid customer service that causes despair and outrage in anyone trying to penetrate the Medicaid wall of inefficiency and ineptitude.
I've written about this before, but here we go again.
Here's the deal: Danny needs a replacement part on his wheelchair for the tilt mechanism to work. This is vital for repositioning, which he needs frequently for his care and comfort. The wheelchair repair service set the chair in one position to still make it usable. Then they sent in all the paper work for Medicaid to authorize the purchasing of the part. Medicaid has such a huge backlog, that wheelchair repair waited for four weeks for Medicaid to respond. When they called about the authorization for service a week ago, they discovered that Medicaid had no evidence that an authorization request had been sent to them. Wheelchair repair started the process all over, faxing in the paperwork. When I called this morning, the wheelchair service said I might have better luck as a parent finding out what has happened to the order for a replacement part.
I called the Medicaid help line [1-800-642-3195] to begin several rounds of responding to automated menu items and listening to messages about how they probably could not help me on this line. After something about cervical cancer and Medicaid hearings, a message played that said "Check your local phone book for dentists. We do not have lists of dentists who take Medicaid".
"Why not?", I said to no one in particular. Some of the messages were so well done that I believed I was finally talking to a human being only to find out that I was still on an automated call.
I finally did get through to someone named Dan. To be sure, I do not blame Dan for any of what ensued. He probably is just some guy who is waiting to find a real job and is doing the best he can in the meantime holding on to one of the worst jobs on earth: listening to people like me complain about Medicaid and reminding him that their inefficiencies hurt real people.
Dan quizzed me, first gathering information about me and then information about Danny, including his Medicaid number. I was not listed as Danny's guardian, although I sent in the paperwork for that years ago. Dan was therefore unable to impart any information of a confidential nature. But he did place me on hold for ten minutes, so that he could figure out who I could call, depending on Danny's Medicaid classification.
Dan will send me the form to fill in (again) so that I will be listed as Danny's guardian and will then be permitted to discuss his case more specifically on the phone. What I then learned is that even when I am listed as Danny's guardian, it won't make any difference: I will have to ask the provider of the service to find out about the status of the Medicaid authorization to replace the broken part. While Danny no longer has a workable tilt mechanism on his wheelchair, I will be running around in circles with the provider who is already banging his head against the proverbial wall.
In other words, there appears to be no way for an individual or a guardian to directly intervene to find out about the status of a request for Medicaid authorization for a service.
Meanwhile, I am spending most of my energy on trying to keep government-funded advocates from "helping" to liberate my sons and people like them from the services they need.
On May 20, 2013 a U.S. House Energy and Commerce Subcommittee on Oversight and Investigations held a hearing on the federal Substance Abuse and Mental Health Services Administration (SAMHSA) and how well it serves people with severe mental illness. The agency was criticized for providing funding to advocacy groups that believe that mental illness is not an illness, that it should not be treated with medication, and that treatment of mental illness infringes on the rights of people who are mentally ill. SAMHSA also funds Protection and Advocacy agencies in every state to provide legal services to people with mental illness. These agencies came under particularly close scrutiny for their overzealous and sometimes dangerous advocacy that prevents severely mentaly ill patients from receiving treatment that could help them. [These are the same P&A's that provide legal services for people with developmental disabilities funded by the Developmental Disabilities Assistance and Bill of Rights Act, the DD Act.]
In testimony before the committee, Joe Bruce, the father of a man with paranoid schizophrenia who was involuntarily committed to a mental hospital in Augusta, Maine in 2006, described how his son was assisted by advocates from the Disability Rights Center of Maine (Maine's P&A agency) to be released early from the hospital without medication and sent home to live with his parents. The incident ended tragically with the son William Bruce murdering his mother Amy in their home.
Here is a link to a video of Joe Bruce's compelling testimony before the committee.
The involvement of disability rights advocates in this case did not end with the tragedy of Amy Bruce's murder. Here are some excerpts from Joe Bruce's written testimony :
"The doctor’s decision to release him [William Bruce], which resulted in such a tragic outcome, was made without the benefit of all of Will’s history or any input from Amy and me." ...
"After his commitment to Riverview by the criminal court, I applied to become his guardian. Will was agreeable to this until, incredibly, a patient advocate told him, 'The guardianship is a bad idea. It would give your father complete power over you.' The attending physician (a new doctor), undoubtedly at the urging of DRCM [Disability Rights Center of Maine], refused to provide the evaluation required in the guardianship application. He told me, 'I could never participate in anything that would cause your son to be considered an incapacitated person.' Bear in mind that at this point in time, Will had been placed in the hospital after being found incompetent to even stand trial!"[emphasis added]
Joe Bruce finally did become Will's guardian and only then did he learn the role of patient advocates in his son's premature and unmedicated release: "The patient advocate, a Trish Callahan, told the treating doctor that DRCM regarded Amy and me as a 'negative force in Will’s life. Amy and I had never met any of these people or even heard of Disability Rights Center of Maine. In the treatment meetings, she acted like a criminal defense lawyer. She openly coached Will on how to answer the doctor’s questions so as to get Will the least treatment and the earliest release. She did this in the face of strongly contrary evidence of Will’s unsuitability for unmedicated release." ... "Lest anyone believe this is a local, isolated occurrence, the National Disability Rights Network [NDRN], responding to the Wall Street Journal’s page one article concerning Will’s case, defended the actions of DRCM, and even prepared talking points to deflect criticism. The patient advocates can do this with impunity because they are literally accountable to no one... "
Joe Bruce and other families in Maine worked to change the only two options available to the courts at the time for people with severe mental illness: either place them in a hospital or release them unconditionally. A third option that was eventually adopted by the state, although opposed by patient advocates, is known as Assisted Outpatient Treatment that allows for the person to be released into the community with the condition that he remain on medication.
"As another example of DRCM’s lobbying influence in this area, while the Maine families and I were busy working on the AOT law, DRCM was successful in getting a bill through the Maine legislature to make it more difficult for families to become guardians. Becoming a guardian is the only way families of adult patients can be involved in the treatment of their loved ones where the patients are unwilling or unable to consent. Why do PAIMIs [P&A advocates] want guardianship to be more difficult? Because a guardianship lifts HIPAA secrecy and allows the guardians into the treatment meetings." ... "Ironically and horribly, Will was only able to get treatment by killing his mother." ... "Tragedy visits families every day. That is a sad fact of life. But an unbearable aspect of Amy’s death is that my own tax dollars helped make it possible..."
For people with Developmental Disabilities, abuses by DD Act programs including Protection and Advocacy have been documented in detail. The DD Act of 2000 has not been reauthorized in 13 years. Instead, the programs continue to get funding every year with very little oversight by Congress. This needs to change. Congressional oversight hearings would very likely reveal the same kinds of abuses by developmental disability advocates that they are finding with advocates for the severely mentally ill.
[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
I am attending the VOR Annual Conference in Washington, D.C. this weekend. VOR is a national non-profit organization that advocates for a full range of service and residential options for people with developmental and intellectual disabilities. 95% of VOR's funding comes from families and family organizations and no funding from the government. Unlike other organizations that get most of their money from government grants, VOR is a truly independent voice for people with severe and profound disabilities who cannot speak for themselves. Here are a few wise words that I picked up from presentations at today's meeting:
"Human beings are perhaps never more frightening than when they are convinced beyond doubt that they are right." Sir Laurens vander Post (1906-1996) South African author.
What's driving this Madness? [over the top assertions that every person with DD can make their own decisions, live safely in the community, work at competitive employment, and be fully integrated into the all aspects of community life]...
"There is, of course, a great deal of utopian nonsense involved. Everyone likes to think they are being broadminded and liberal when in fact they are living inside their own fantasies of what they think all disabled people want or should want instead of listening to disabled people. "The do-gooders always feel they know what is best for you and they seem to have taken over DOJ [U.S. Department of Justice]..." (anonymous attorney)
"Love the truth and hate the lie" and "Trust the data." Ralph Kennedy, panelist on Standardizing Quality Across all Settings
