David Kassel at The Real Choices in Care Blog has a lot to say about the extreme ideology of some disability advocates who oppose all congregate care for people with developmental disabilities. In his post "How Ideology trumps logic in the care of the developmentally disabled", 8/20/13, he observes that "according to the ideology, any care setting for the developmentally disabled that serves more than two or three disabled people at one time is now considered to be 'segregated' because it separates those people even momentarily from the 'community.' No consideration is given here to the consequences of basing policy on this ideology or what the recipients or their families want or think. " He goes on to note that for these advocates, closing developmental centers all over the country over the objections of families and guardians is not enough: "Farming programs for the developmentally disabled must be shut down. Sheltered workshops must be eliminated. Nursing homes that provide expert care for the disabled are seen as no different than nursing homes that do not have that expertise. And group homes that house more than three people must be closed. They are all potential congregate care settings and therefore too 'institutional' for the good of the people who participate in them or are served by them." The ideology of these groups has permeated government agencies at all levels, including the Centers for Medicare and Medicaid Services and the U.S. Department of Justice. Only the assertion that "segregation is discrimination" is taken into account, often without evidence that any individual has actually been discriminated against (either forced into or prohibited from participating in a program or activity against the individual's will based on the person's status as a disabled person). Often the only criteria sited for establishing discrimination is that the person associates or lives with other people who are disabled. This is an ideology that unnecessarily causes suffering for both the individuals in need of specialized care and their families. Kassel includes a statement in his blog post from a father whose daughter lives at a specialized nursing facility in Massachusetts. He and other families lived in fear for years that their loved ones with extensive medical needs would be removed from the care they needed because of a lawsuit that has finally been resolved: "The (Seven Hills Center) families spent hundreds of hours in meetings and seeking out legislators to attempt to find someone to stand up for their children. Several of the parents sought medical help due to the increased anxiety and stress from the case. When their children died due to the natural course of their many medical problems, we all mourned together. None of us would mourn for the self-righteous extremist opponents of congregate care who imposed this hell on us. Not one of those advocates has shown a single iota of concern for the well-being of our children, who are among the neediest individuals in this world. If any one of them has a conscience, they should be deeply ashamed. We have never heard the slightest word of apology from them."
In the world in which many of these disability advocates live, there is no need to make distinctions between good care and bad, between differences in people that make congregate care not only necessary but desirable for some, but not for others, or to consider the potential harm in the policies they promote. All they know is that they know best and they are right. What a wonderful fantasy that must be.
In November 2007, a man from Bloomfield Hills, Michigan, was accused of raping his 14-year-old autistic daughter based on statements that she allegedly made through facilitated communication. Facilitated communication is a controversial and largely discredited technique that supposedly allows a non-verbal person to communicate through a facilitator who assists the person in typing out messages on a keyboard.
The man's wife was accused of knowing about the abuse but not doing anything about it. The girl's brother who has Asperger's Syndrome was questioned by the police without a lawyer or guardian present and was told by his interrogator that there was incriminating evidence that proved that the rapes had taken place and that implicated the brother in the abuse. The story told him by the police turned out to be entirely fabricated. The man spent 80 days in jail, his wife was placed on an electronic tether, and both children were placed in foster care. The case was eventually dismissed; there was no physical evidence that a rape had ever occurred and the facilitator was shown to be the author of the allegations, not the autistic girl. The parents sued the school district, the police, the prosecutors, and the Michigan Department of Human Services. The police settled the suit for $1.8 million, while the others involved claimed governmental immunity. According to a report in the Detroit Free Press, "West Bloomfield parents allowed to sue prosecutors over faulty sex-abuse case" by John Wisely, 8/29/13, an appeals court said "governmental immunity doesn’t shield Oakland County prosecutors, Walled Lake Consolidated Schools officials and staffers from the Michigan Department of Human Services from liability for their actions in the case." The parents' lawsuit claiming that their constitutional rights were violated may now proceed to trial. The case was flawed from the start because of its reliance on evidence from Facilitated Communication. The Judge was especially critical of the prosecutors for allowing the girl's brother to be questioned: "'It was objectively unreasonable for Dean and Carley [the prosecutors] to subject (the brother) to an interview of this type without consent,' the court ruled." The Court also found that Rebecca Robydek, a social worker with the state Department of Human Services who placed the children in foster care, could not claim governmental immunity. The court ruled that “Robydek’s actions are especially troubling in this situation given the multiple documented errors in the facilitated statement used as the sole basis for Robydek’s recommendation.”
Here two detailed articles from the Detroit Free Press on the vote by the Michigan Senate to expand Medicaid to cover people earning up to 133% of the poverty level. The first article, "Medicaid expansion passes after heated politicking; 470,000 more Michiganders to get coverage", 8/27/13, covers the nitty gritty and sometimes unseemly wheeling and dealing that it took to get the bill passed. The second article, "Delay in Medicaid expansion to be costly" deals with the consequences of the failure to get a two-thirds majority of the Senate to agree that the bill should take immediate effect. Both articles are by Kathleen Gray from the Detroit Free Press Lansing Bureau.
The passage of Medicaid expansion allows the state to take advantage of extra federal funding available under the Affordable Care Act to cover low-income people. Although the Michigan Senate voted to approve Medicaid expansion, there's a catch. The bill will not take effect until April 1, 2014. This could change after the Michigan legislature comes back in September, if two-thirds of the Senate can agree that it should take effect immediately (meaning on January 1, 2014). If the the legislature fails to pass the bill by a two-thirds majority, the state will have to forgo an estimated $7 million per day in federal funds that would have covered health care for this low-income population.
The effect of Medicaid expansion on adults with developmental disabilities will not be as great as the effect on people with mental illness, although low-income families with disabled children would be likely to benefit from Medicaid expansion. The vast majority of adults with developmental disabilities already meet the eligibility criteria for Medicaid, but many people with mental illness who can work, at least sporadically, have a harder time qualifying. Medicaid expansion will provide Medicaid to mentally ill people who meet the income criteria and also make them eligible for Medicaid-funded mental health services. It should also have a significant impact on low-wage caregivers who do not currently have health insurance.
One reason the bill won enough Republican support to pass was offered by State Senator Kahn: “This bill is about reform. It is a national model,” Kahn said. “The taxes in the Affordable Care Act are billions of dollars. And for us in Michigan, it will be $2 billion siphoned from our people, and we’re going to bring that back to the state.”
Here is addtional information on Medicaid expansion, according to the Detroit Free Press:
Federally-funded Medicaid expansion will cover 320,000 low-income Michiganders next year and 470,000 people by 2020.
"The bill requires the additional recipients [of Medicaid] to contribute 5% of their out-of-pocket medical costs. After 48 months, that co-pay would increase to 7% or the recipient could purchase insurance on the health care exchange...if a person who falls in that poverty level is determined to be “medically frail” — either with a chronic disease, mental illness or are unable to complete the daily tasks of life — they would remain at the 5% co-pay."
The federal government will have to grant waivers to Michigan for two of the provisions of the bill, the creation of health savings accounts for Medicaid recipients and language that allows recipients to choose between a health care exchange or Medicaid benefits after 48 months.
The Medicaid expansion will be fully paid for by the federal government through 2017. The federal contribution would drop to 90% by 2020.
An opinion piece in the New York Times, (8/3/13) by Christine Montross entitled "The Woman Who Ate Cutlery" illustrates the point that trying to save money by making care and treatment for people with mental illness less accessible, does not save anything. Emergency rooms become the only available treatment venue in a crisis - a poor substitute for preventive care before a crisis develops, hospitalizations increase, and sometimes lives are lost.
Problems in the the system of care for people with mental illness often parallel those for people with developmental disabilities. There are many people with developmental disabilities who have unusual and sometimes dangerous behaviors, with the added complication that the person's capacity to communicate their frustrations make it even more difficult to know how to relieve their distress. There are also people with DD whose medical problems, when not addressed early or treated appropriately, can land them in the emergency department with the result that the person receives too little or too much treatment that is almost always more costly than it needs to be.
In "The Woman Who Ate Cutlery", "M" is an extreme case - a woman who ingests knives and forks and other sharp objects and inserts objects and substances into her body to relieve stress caused by mental illness.
According to the article:
"If M had insurance, or enough money to pay out of pocket, she might see a therapist every week for an hour and a psychiatrist once or twice a month. Instead, she’s treated by an overextended, publicly funded mental-health center where she sees a psychiatrist for 20 minutes, four times a year. Not surprisingly, her symptoms persist and she is hospitalized again and again."
"…Our failure to provide a critical, basic level of outpatient psychiatric care to the mentally ill creates a volatile cycle in which uninsured or underinsured patients avail themselves of treatment only when they are in crisis. This is analogous to refusing to treat hypertensive patients — or to monitor their blood pressure — unless they show up in the E.R. after having had a stroke."
"…If M had a regular outpatient psychiatrist, she could call him or her in these moments of distress, schedule an urgent appointment, and obtain treatment and care from a simple phone call. But M does not have a relationship with a provider; she has a relationship with an institution. And the institution requires that M be in imminent danger in order to be treated."
"…According to Dr. E. Fuller Torrey, president of the national nonprofit Treatment Advocacy Center, 'Assisted outpatient treatment has proven to reduce psychiatric hospitalizations by more than 70 percent.'"
Montross concludes, "…we will need to place new societal value on the importance of mental health. Until accessible, affordable mental-health care is a universal right, too many psychiatric patients will continue to receive the reactionary, crisis-driven care that is all our emergency rooms are equipped to provide."
It can be cold up here, even in August. As we were sitting huddled around the fireplace, throwing logs on the fire, this song from the 1970s came to mind. Here it is sung by Tompall Glaser. Lyrics are by Shel Silverstein. This has nothing to do with my personal life, but parts of it ring true for people I know.
This is from the August 2013 newsletter, The Advocate, from The Area Agency on Aging 1-B. AAA 1-B is a nonprofit agency serving the needs of older adults in Livingston, Macomb, Monroe, Oakland, St. Clair, and Washtenaw counties.
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Three Medicaid Reform Proposals Move to Full Senate for Consideration, Vote Likely in Early September
On July 24th, the Senate Medicaid workgroup convened by Majority Leader Randy Richardville (R-Monroe) and led by Senator Roger Kahn, M.D. reported three Medicaid reform proposals; HB 4714 as passed by the House on June 13 with minor changes, SB 422 (Caswell) known as the Michigan Low-Income Health Plan Act, and Senate Bills 459 and 460 (Colbeck) known collectively as the Patient-Centered Care Act. All three bills were sent to the Senate Government Operations Committee and were voted out of committee on July 31st to be sent to the Senate for full consideration, debate and a likely vote will happen in early September.
The decision to move all three Medicaid proposals out of committee for a full senate vote was made by Senate Leader and Government Operations Committee Chair Randy Richardville citing that all three bills have their own merits. Supporters of HB 4714 worry the additional proposals may strip potential votes in favor of SB 422, or 459 and 460.
HB 4714 (S-7): The Healthy Michigan Plan reforms Medicaid to cover individuals with incomes up to 133% of the federal poverty level for up to 48 months with a requirement that the newly insured would pay no more than 5% of their out-of-pocket medical expenses. Following the 48 month period, the newly insured could then remain on Medicaid with an increase in their copayments up to 7% or they could choose to purchase health coverage through the Federal Health Care Exchange.
SB 422: The Michigan Low-Income Health Plan Act would essentially create a state funded alternative to Medicaid. The Act would provide tax credits to those between 133% and 100% of Federal Poverty Level (FPL) to enable the purchase of insurance on the healthcare exchange established by the Affordable Care Act. This bill establishes a Michigan Low-Income Health Plan which would provide health coverage to persons who meet the following criteria; Not eligible for Medicare, Medicaid, or MIChild; Household in-come under 100% of FPL; Under age 65; Not eligible for veterans health benefits; and have no other health insurance coverage.
SB 459, 460: The Patient-Centered Care Act would require the state to license private health exchanges, create the Low-Income Trust Fund, and “migrate” Medicaid recipients to individual health savings accounts from which they could purchase a qualified health plan. The Low-Income Trust Fund would be used to fund the deductibles of former Medicaid or MIChild recipients until the balance of their health savings account is adequate to pay their deductibles.
HB 4714 S-7 closely mirrors the version passed by the house in June and is likely to draw the majority of bipartisan support. Both alternative plans SB 422 and SB 459, 460 are receiving criticism as too costly to the State’s general fund, or as unfeasible given the knowledge and personnel requirements needed to administer the program. Contact your Senator to share your opinion on reforming Medicaid in Michigan
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.
