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| Happy Dan |
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.
Go figure.
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
This is from a press release from the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD):
The Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force have released a study, Priced Out in 2012, which demonstrates that the national average rent for a modestly priced one-bedroom apartment
is greater than the entire Supplemental Security Income (SSI) payment of a person with a disability. The study sheds light on the serious problems experienced by our nation’s most vulnerable citizens – extremely low-income people with significant and long-term disabilities.
The Study – Priced Out in 2012 – compares the monthly SSI payments [Supplemental Security Income is provided to people who have a very low or otherwise non-existent income and are not able to work] received by more than 4.8 million non-elderly Americans with disabilities to the Fair Market Rents for modest efficiency and one-bedroom apartments in housing markets across the country. The Fair Market Rent for rental housing is determined by the U.S. Department of Housing and Urban Development (HUD). According to HUD, rent is affordable when it is no more than 30 percent of income. SSI is a federal program that provides income to people with significant and long-term disabilities who are unable to work and have no other source of income and virtually no assets. Priced Out in 2012 reveals that as a national average, people with disabilities receiving SSI needed to pay 104 percent of their income to rent a one-bedroom unit priced at the Fair Market Rent.
“Nowhere in the United States can people with disabilities receiving SSI afford a safe, decent place to live,” stated Kevin Martone, Executive Director for TAC. “Yet taxpayer resources are spent exponentially on the costs associated with institutionalization and homelessness when more cost effective, proven solutions exist. I encourage our policy makers to consider the magnitude of this crisis and work in a bipartisan fashion to address this form of discrimination against our most vulnerable citizens.”...
The press release goes on to point out that in the midst of a housing crisis, the President's Fiscal Year 2014 budget cuts $40 million from housing subsidies that would allow states to target rental assistance to people moving out of institutional settings and homelessness.
This is a serious crisis, but I take issue with using the housing crisis for people who depend on SSI to further the cause of deinstitutionalization and opposition to congregate care in general. For people with severe developmental disabilities, the expense of housing is only part of the equation for providing appropriate services in all settings whether they are in community homes or institutions. For my own sons, the cost of care and specialized services is far greater than the cost of housing. Moving people from institutional settings or congregate care does not necessarily save money overall and when it is done against the will of the people affected and their families or it results in a reduction of services and risks to safety, it can be deadly.
But yes, this is a real crisis for the many people who need rent subsidies to help them live a more independent, dignified, and fulfilling life.
Here is the link to the full report.
This is from Ed Deigel at ddAdvocates of Michigan:
There are many pros and cons and personal insights surrounding the issue of Medicaid Expansion. Some of those opinions are based on the thought: "I've earned mine, let everybody else earn theirs." or "If they worked hard enough they wouldn't need Medicaid." Recently I've had a couple of epiphany thoughts around this discussion:
- With 20 years experience on the board of a non-profit housing corporation providing residential assistance to persons with Developmental Disabilities, I know that quality service begins with quality staff. I also know that state wide most direct care workers make less than $10.00 an hour and in order to make ends meet it is not unusual for a staff worker to work 2 or more jobs. Many of these compassionate, hard and long working employees would benefit from the Medicaid expansion. I don't know a more deserving group.
- I have a finance background and can relate to some of the Governor's emphasis on running the state more like a business. In support of the expansion, the Governor presented the legislature with a strategy that would assure that Federal funds guaranteed for the Medicaid expansion in Michigan will support the expansion (ie take care of all incremental funding) for at least the next 20 years. Unfortunately, I believe that in this case the Legislature is trumping principal (no new spending) with bias. In addition, Michigan citizens, employers and medical facilities and doctors will not benefit from the guaranteed federal funding -- and at the same time, federal taxes paid by Michigan citizens will be diverted to pay for similar programs in other states!!
- We have all seen the news articles that in Michigan prisons have become the new institutions with reports that 25% of the prison population is mentally ill. We all know that Medicaid supports treatment for mental illness and again many of this population would qualify for services hopefully BEFORE they end up in a prison situation.
Give your legislators a call today. Tell them you support Medicaid expansion in Michigan.
The following text is from an article in Crains:
LANSING - The leading Republican in the Michigan Senate says lawmakers and Republican Gov. Rick Snyder are nearing agreements on the state budget targets that will likely not include a proposed expansion of government health insurance for low-income adults.
Senate Majority Leader Randy Richardville told reporters on Tuesday that the spending targets for the budget that takes effect Oct. 1 could be finalized soon.
The Monroe Republican said they are rejecting federal dollars for the Medicaid expansion under the Affordable Health Care Act "at this time."
Lawmakers in the Republican-led House and Senate passed budgets rejecting Snyder's proposal to expand Medicaid to nearly 400,000 Michiganians.
House Republicans recently introduced a plan that limits able-bodied adults to four years of coverage; that plan is now being considered in committee.
When my son Danny was a small child and I began to meet other parents with handicapped children (yes, that's what we called them), autism was considered a severe disability. No one used the words "high-functioning" and "autism" in the same sentence. Causes for the condition were conjured up by "experts" who mostly blamed autism on mothers who rejected their children. Autistic kids and their parents were subjected to bizarre therapies and treatments that as far as I could tell, never cured a single one. Overall, living with an autistic child was at least as distressing as living with Danny.
This is from an article in NJ.com, 5/5/13, "Expanded definition of 'autism' goes astray" by the father of an autistic child from New Jersey. James Terminiello writes that "…Today, autism seems to encompass individuals with personality quirks and slight disorders who otherwise carry on with their lives. That fastidious guy in the office who lines his pencils in size order and has no friends may be lightly tinged by autism. On the other hand, he holds a job, owns a car, pays rent and earns $75,000 a year. Should he really be placed on the autistic spectrum?…Is this the true face of autism? As the father of an autistic prime [as he refers to the more severe forms of the condition], I would hack off my right arm to see my son suffer such a fate."
While he is grateful for the increased attention autism gets in the media and increased funding for research, it is difficult to be so positive about a condition that leaves "those who truly suffer in the dust."
He says, "It is time to stare directly at the plain, raw face of real autism: a world of painfully slow, unrewarding therapy carried out by near-angelic professionals who suffer very high burnout rates. It is a place where marriages are wrecked or destroyed amid tears, accusations, anger and arms thrust in the air to the words 'I can’t deal with this anymore!' It is a realm where non-autistic siblings are often given short shrift by strained parents and grandparents.
"Why paint such a dark picture? Because real autism is a dark picture. By expanding the definition to include quirky and colorful individuals who make good copy, autism seems to be getting an unneeded, glossy makeover. I’m happy for these individuals, whatever their condition may be, and wish them all the best, but calling them autistic is like saying a man with a broken finger is as handicapped as a quadriplegic...As for me, I want my autism back."
