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."
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| Spring at last |
I attended two presentations in the last 6 weeks by Stacy Coleman sponsored by NAMI (National Alliance on Mental Illness) of Washtenaw County, Michigan, and the Washtenaw Community Health Organization (WCHO). Stacy works for the WCHO and is a Medicaid Hearing Officer. She is an expert on Medicaid law as it pertains to people served by the Community Mental Health system. Her presentations on due process rights and mental health services for people with mental illness and developmental disabilities are always informative.
This was a refresher course for me (see the Friends of DD Newsletter from November 2010) and a reminder that many families of people with DD are not well-informed about their family member's rights, the availability of services, or the remedies afforded to Medicaid recipients who disagree with decisions made by their local CMH. It is not only a lack of information that is the problem, but the reality that many families are sometimes misinformed and misled by people within the CMH system.
Here are a few bits of information from Stacy's presentation that you need to know:
IN MICHIGAN, THERE ARE NO WAITING LISTS FOR SERVICES
Because of agreements Michigan made with the Federal agency that regulates Medicaid (CMS) that allows the state to have a managed care system for Medicaid-funded mental health services, there can be no waiting lists for services.
MEDICAL NECESSITY
Mental Health Services for people with DD must be"Medically Necessary". The same criteria apply to people with mental illness.
According to the Michigan Medicaid Provider Manual, individuals with developmental disabilities who are eligible for Medicaid are entitled to "medically necessary" supports, services, and treatment that are:
- Necessary for screening and assessing the presence of a developmental disability
- Required to identify and evaluate a developmental disability
- Intended to treat, ameliorate, diminish, or stabilize the symptoms of developmental disability
- Are expected to arrest or delay the progression of a developmental disability
- Are designed to assist the individual to attain or maintain a sufficient level of functioning in order to achieve his goals of community inclusion and participation, independence, recovery, or productivity.
The determination of medical necessity must be based on information provided by the person with a DD, the person’s family and/or others who know the individual, and clinical information from health care professionals. The determination must be based on a person-centered plan and made by appropriately trained developmental disabilities professionals within federal and state standards of timeliness. It must be "sufficient in amount scope, and duration of the services" and documented in the Individual Plan of Service.
Services "sufficient in amount, scope, and duration" need to be specified in the IPOS with as much detail as is necessary to meet the needs of the person.
Services may not be denied based solely on present limits of the cost, amount, scope, and duration of services. Determination of the needs for services shall be conducted on an individual basis.
WRITTEN NOTICE FOR ADVERSE ACTIONS
When you ask for a service (do this in writing to make sure you have documentation of the request), the CMH agency must give you a written notice if the agency decides:
- to deny or limit the service
- reduces, terminates or suspends the service, denies payment for a service in whole or in part, or fails to authorize a service
In most cases the CMH agency must give you advance notice of an "adverse" action 12 calendar days before the action takes effect, or they must give you notice at the time the Individual Plan of Service is completed.
MEDICAID HEARINGS
You may ask for a
state Medicaid hearing through the Michigan Department of Community
Health if you do not agree with the decision of the PIHP (the WCHO in
Washtenaw County). Go to the Michigan Department of Community Health
website for more information and a "Request for Hearing" form.
Services must continue while a hearing decision is pending if you have asked for the hearing in a timely manner. See the WCHO website on hearings and appeals for more information.
Here is more on the WCHO regional Due Process and Appeal Committee with links to related documents including the Medicaid Provider Manual.
This is from the website of The Washtenaw Health Initiative, "a voluntary, county-wide collaboration focused on how to improve access to coordinated care for the low-income, uninsured, and Medicaid populations."
Among the findings of the WHI is this:
Dental Care for Low-Income Adults: Lacking and In Great Need
18,417 adults in Washtenaw County had Medicaid coverage with dental benefits in 2010. Yet, in a 2007 survey of community dentists, only 15% said they accepted Medicaid benefits and only 8% (five practices) said they were accepting new Medicaid patients (more practices accept Medicaid benefits for children under 18 years old). Medicaid’s low per case reimbursement is one of the main reasons dentists said they do not accept Medicaid coverage.[emphasis added]
While there are some community outreach efforts, just three clinics (Hope Clinic, Community Dental Center and the U-M dental school) currently provide low or no cost dental care on a routine basis to adults in the county. Restrictions on who can receive care at such clinics further limit patient options. Emergency departments recorded 4,667 dental-related emergency visits in 2008. The 28 hospital admissions with disorders to the teeth and jaw cost about $534,000 – about $19,000 per patient. [emphasis added]
For the record, Washtenaw County is the home of the University of Michigan with a dental school ranked in the top ten in the country. That has not helped much in delivering good dental care to low-income people.
[Read the full letter here.]
Secretary Shaun Donovan
U.S. Department of Housing and Urban Development
451 7th Street, SW
Washington, DC 20410
Dear Secretary Donovan:
The National Association of the Deaf (NAD) is contacting you in your capacity as the head of the United States Department of Housing and Urban Development to raise our heightened concerns about the egregious state of housing for deaf and hard of hearing individuals in the United States....
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...
In essence, most deaf and hard of hearing people who reside in public or subsidized housing live in fire-traps because the smoke alarms do not alert them visually or in other non-audible ways. Even if they do have a stand-alone smoke alarm that visually alert them, this alarm is typically not connected to the other smoke alarms in a housing complex. As a result, a deaf resident would only know of a fire in a complex if the fire was so close to their own unit, at which point, it is probably too late for the deaf resident to leave the complex.
Moreover, due to the unique communication needs of deaf and hard of hearing people, many of them exist in isolation in inaccessible housing where there is no one else to communicate with in sign language. These residents therefore experience extreme loneliness and depression, and their quality of life is deplorable.
Yet, HUD has the atrocious gall to intervene in a housing project that was designed to be a place of complete accessibility for everyone including deaf and hard of hearing people. Instead of encouraging a paragon of accessibility, HUD is forcing deaf and hard of hearing residents to live in isolation and in fire-traps where they are not only without practical fire alarms that alert them, but without access to even the most basic communications access to the community in which they live...
Specifically, we are extremely concerned that HUD is currently pressuring the State of Arizona to sign a “voluntary” compliance agreement that would prohibit an award winning housing project called Apache ASL Trails from giving preference to its state-of-the-art accessible housing units first to individuals who need those accessibility features and services provided at Apache ASL Trails once the total number of residents with disabilities exceeds HUD’s arbitrary quota of 25%. There is no statute or regulation that mandates any such 25% quota, and the imposition of any such quota is an ideological principle that ignores the reality of housing needs for many people with disabilities including deaf and hard of hearing individuals. [emphasis added] There is, however, law that requires that these individuals be given a full and equal opportunity to live in accessible housing that meets their needs.
While many of the residents at Apache ASL Trails are deaf and chose to live there because they sought out the desperately needed accessibility features of this unique complex, not all the residents are deaf. Apache ASL Trails opened in 2011 and there has never been a discrimination complaint filed against them nor have any qualified applicants been rejected by Apache ASL Trails. You do not need to be deaf to live at Apache ASL Trails...
The NAD believes that true housing equality means that individuals with a disability must be granted the freedom to choose to live in and benefit from housing that is equal to the housing available to others. We urge you to immediately halt advancing arbitrary maximum quotas and to cease denying preferences to individuals who need the accessibility features of a unit and wish to live in that unit. Please feel free to contact us if you have any questions or need additional information. We look forward to your response.
Sincerely,
Christopher D. Wagner
President
Howard A. Rosenblum
Chief Executive Officer
Co-signed by 75 organizations for people who are deaf or hard of hearing
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.
