This is from an article in Disability Scoop, "Disability Spending Drops for the First Time in Years" by Michelle Diament, 7/22/13, based on the 2013 State of the States in Developmental Disabilities, a report from the University of Colorado:
"Overall government spending on people with intellectual and developmental disabilities for 2011 — the most recent year for which data is available — was $56.65 billion, the report found.
"Of the funding distributed nationwide that year, about 20 percent went toward programs providing family supports, employment services, personal assistance and similar aid.
"Almost 60 percent went toward residential settings for six or fewer people while 5 percent funded living environments with seven to 15 residents. State-run institutions with 16 or more residents received 11.5 percent of total spending and 3 percent went to institutions that were privately run.
"Nearly 80 percent of government spending on people with intellectual and developmental disabilities was funneled through the Medicaid program in 2011, the report found. Other funding came from the states and federal programs like Social Security."
More information on the State of the States Report was presented here in a Webinar on Feb. 27, 2013, hosted by the American Association on Intellectual and Developmental Disabilities (AAIDD). The presentation shows some disturbing trends:
"Current Trend: Support Services Waivers Characterized By:
"A low dollar cap on the total amount of HCBS Waiver services authorized for each beneficiary
"Flexibility in the selection of services within the dollar cap
"Expectation that unpaid family caregivers will provide significant support to Waiver participants [emphasis added]"
"An Estimated 853 Thousand Persons with I/DD Live at Home with Aging Caregivers"
Intellectual and Developmental Disability (I/DD) spending per $1,000 of state aggregate personal income, shows that Michigan ranks 26th at $3.75, a reduction in spending of 0.2%
In addition is this from another 2013 report from UCP, "The Case for Inclusion":
"Waiting lists for residential and community services are high and show the unmet need. More than a quarter of a million people (268,000) are on a waiting list for Home and Community Based Services. This would require a daunting 44% increase in states' HCBS programs! However, 20 states report no waiting list or a small waiting list (requiring less than 10% program growth). This measure has gotten much worse over the life of the Case for Inclusion. Since the 2007 Ranking, the size of the waiting list nationally has almost doubled from 138,000 to 268,000."
In Summary: Less money is being spent on people with DD. Waiting lists for services have almost doubled since 2007. 853,000 people with DD live at home with aging parents. The expectation is that unpaid family caregivers will provide "significant support" to waiver recipients. And there don't appear to be any plans to relieve the burden on families by expanding residential options for people with DD.
This is a video of a TV news report from WMTV in Madison, 7/18/13, about a violent 26-year-old felon with developmental disabilities who is locked in a house in the city of Baraboo, Wisconsin. Neighbors are frightened and don't know why he is there, local politicians are raising questions with the state about him, and the police are making crisis plans for what to do if the man escapes.
According to the report, "Neighbors fear violent felon locked in Baraboo home" by Phil Levin, on the WMTV Madison website:
"The home has fortified windows, a padded cell and doors that lock from both sides. Staff carry panic buttons and wear bite sleeves, but since the man was moved to the facility in February at least ten staff members have suffered injuries in altercations. Police reports indicate employees sustained broken bones, bites, scratches and other injuries trying to contain the man."
It goes on: "[The residence] is sparsely furnished with a locking cell in its interior..many of the altercations begin when the man is assigned a 'time-out' in the padded room. Reports and staff indicate the man has broken doors and windows and sometimes maneuvers behind staff in apparent attempts to try and strangle them."
A politician weighs in: "'Any time you can get someone with disabilities into a community setting, that's the best thing for everybody, it's a win-win for everybody,' said [State Senator Jon] Erpenbach. 'In this particular situation with the violent nature of this individual, and I can't stress this enough this individual requires four staff members within this house dressed in kevlar so they are not harmed to deal with this particular individual, there might be a better way to deal with the whole situation.'" Interesting that the politician and a former staff member interviewed on TV do not question the underlying idea that living in the community is always the best thing that can happen to people with developmental disabilities even though everyone acknowledges that in this case it is not working to anyone's benefit. The only person who expresses any real concern for the man who is being subjected to imprisonment "in the community" is Police Lt. Rob Sinden who asks, "'If we have ten incidents where this individual has sent people to the hospital, how many times has he [the resident of the home] been injured?" Indeed. What is happening to that poor man who tries to strangle people when he is "assigned" to the segregation cell? Home Sweet Prison Home.
Why is the ARC Michigan, an advocacy group for people with developmental and intellectual disabilities, having a hissy fit over two family-initiated projects in southwest Michigan? The ARC Michigan is of the opinion that if the state allows Medicaid funds to pay for services to people with DD who choose to participate in these projects, the state will be going against current trends, departing from current thinking on disabilities, and possibly violating the Americans with Disabilities Act.
This "warning" was issued in two letters from Dohn Hoyle, the Executive Director of the ARC Michigan, to the MDCH. [For an explanation of abbreviations and links to the full text of both letters and the MDCH response, see the end of this post.] The ARC Michigan receives most of its funding from federal and state government grants. [See the ARC's 2012 Annual Report ] Of course the state does not have to ask the ARC for permission before allowing the expenditure of Medicaid funds.
The two family-initiated projects targeted by the ARC Michigan are Benjamin's Hope and AACORN (Autism Agricultural Community Option for Residential Needs). Benjamin's Hope, near Holland Michigan, is a planned community for people with autism spectrum disorder. It is described here on the website of LTO Ventures, a non-profit company that develops communities for people with autism:
"A 40-acre campus designed as a community-based model to provide housing, recreation, vocation and support for 24 residents in six custom-designed homes. It is a private/public model, built with private dollars, and utilizing public funds for direct care. They received 62 applications for the first 8 available residential slots. [emphasis added] The first two residences have been completed, and the community building is nearly done." Four women moved into a licensed group home at Benjamin's Hope in June, 2013. AACORN Farm is still in the development stage but has received non-profit status and is looking for property in Kalamazoo County, Michigan. While residential options are being developed, AACORN has started a vocational program. According to the AACORN website, "Tillers International of Scotts, MI has generously offered to let us use their farm and help care for its animals and gardens, and to have arts and crafts indoors while we are raising funds for a farm of our own…The program will run three days per week with just a few participants while we are breaking it in. In September, the program will be offered four days per week and we will be adding more participants." Here is an article from the Kalamazoo Gazette, 4/8/13, with more about AACORN Farm. It is clear that the years of thought, energy, and planning invested by these families of autistic children are approaching fruition. It is also clear that these two programs have broad community support and plans for residents to be fully engaged in what the broader community has to offer them. So why is the ARC in such a huff?
The ARC is right that these projects go against the current trends and thinking prevalent among government-funded advocacy groups and the government agencies that fund them. Creative ideas for providing services and residential options for those with the most severe and complex disabilities may well be thwarted by misguided and potentially harmful government policies with the support of mainstream government-funded advocacy groups. [See CMS rules limiting choice].
For decades, advocacy groups such as the ARC Michigan have been railing against institutions for people with DD [e.g. Intermediate Care Facilities for Individuals with Intellectual Disabilities or ICFs/IID], despite the fact that such settings are a legitimate choice for people who need that level of care. For years the ARC Michigan has been chipping away at services and residential options provided in settings that serve more than three or four people with disabilities. The basis for this bizarre policy appears to be the faulty assumption that only by limiting the number of disabled people that associate with each other in one place, can we assure their integration into "the community". Not only is this assumption based on tunnel vision, but it is also predicated on a special interpretation of what constitutes a "community" [See "Integration or Isolation? Defining Community Beyond Bricks and Mortar"]
To these advocates, where and with whom one associates is not a matter of free choice or individual need, but is instead a matter of policy applied generally to all people with disabilities and enforced through government mandates:
"We don’t believe that hiding behind language regarding supporting the housing preferences and choices of people with disabilities (or those of their parents or guardians) would shield any new, additional, segregated developments or its funding from being considered discriminatory as segregating persons with disabilities." …Dohn Hoyle, ARC Michigan, 4/30/13
The ARC Michigan claims that using Medicaid funding to pay for services at Benjamin's Hope, AACORN, and similar programs may violate the 1999 U.S. Supreme Court Olmstead decision interpreting the Americans with Disabilities Act. However, the ARC Michigan's reading of Olmstead is faulty. Olmstead does not support the view that congregate settings are automatically discriminatory against people with disabilities. Instead, it supports individual choice. It does not specifically focus on congregate settings in the larger community, such as group homes. Even if one lumps such settings together with larger facilities and assumes that every licensed setting is an "institution", Olmstead still does not prohibit them:
“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.
Stated another way:
“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]
Personal choices and needs are the governing factors, not the oversimplified criterion advocated by ARC Michigan.
For families living with a severely disabled family member, a utopian vision of a world where everyone, regardless of the nature or severity of their disabilities,can live independently, engage in competitive employment, and live fully integrated lives in "the community" (whatever that means), makes as much sense as a vision of a world where severe disabilities don't exist at all. We need realistic solutions, not over-simplified utopian notions that only serve to limit the range of choices. Creative family and community-based projects that provide specialized services and residential options to people with DD should be encouraged, not prevented from getting the assistance they need to succeed.
*************************** Information on the ARC Michigan: Executive Director: Dohn Hoyle President: Donald Teegarden Board of Directors Contact Information
***************************** Letters from Hoyle to MDCH and MDCH to Hoyle: A short lesson in MichiganSpeak will make reading the letters easier: a CMHSP is a Community Mental Health Service Provider - a local CMH agency that provides services to people with DD and other disabilities. A PIHP is a Pre-Paid Inpatient Health Plan, a regional CMH agency that distributes funding to local CMH's and performs other administrative functions. The AFP is the Application for Participation that assures that PIHP's comply with all relevant federal and state requirements.
Links to full text of Letters: (a) Letter to MDCH from Dohn Hoyle dated 4/10/13
(b) Letter to MDCH from Dohn Hoyle dated dated 4/30/13
(c) Letter to the ARC Michigan from MDCH dated 4/25/13
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.
