Recently, I came across an article on the Huffington Post Website by Liza Long, the mother of a son with bipolar disorder. The article, “5 Reasons I Wish We Would Stop Talking About 'Recovery' for Serious Mental Illness And the Word I Wish We Would Use Instead” (1/30/15), was written after a friend’s 22-year-old son, who had paranoid schizophrenia, committed suicide. The young man’s death was all the more poignant because the mother and son had been featured in a series of articles in USA Today on “The Cost of Not Caring”. The son was finally receiving the treatment he needed and seemed to be on the verge of successfully managing his illness.
The author reflects on the way we talk about mental illness as possibly contributing to the stigma experienced by people with its most severe manifestations:
“There's a popular quote floating around mental health advocacy circles: ‘Mental illness is not a choice. But recovery is.’ I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word ‘recovery.’ When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac….I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.”
“...The concept of recovery increases stigma, both within and outside the mental health community. ...if people recover, why aren't you recovering? …Recovery seems dependent on a prescribed set of treatments that may not work for everyone.”
“…Mental illness is not a choice. But hope is. Even in the face of tragedy, today I choose hope.”
As the mother of two adult sons with profound developmental and intellectual disabilities, I see striking parallels in how disability rights advocates, intentionally or not, marginalize and stigmatize people with the most severe developmental disabilities.
Disability advocates talk about high expectations rather than recovery. Low expectations, they say, are barriers to achieving independence, productivity, and full integration into the community that all people with disabilities can be expected to achieve. These admirable goals may be achievable by some people with even the most severe disabilities, but certainly not by all. What about 38-year-old Danny, who functions at the level of a 6 - 12 month old infant and needs total help and assistance to accomplish anything. Independence and productivity are pipe dreams for Danny, but maybe we can blame that on his mother who hasn’t expected enough of him.
And why pay for all the things that Danny does need, such as competent and compassionate care in a setting that offers him comfort, pleasure, and a meaningful life, when these things will never change him into a person who can meet expectations set by others? What does "full integration" mean for a person who can't communicate in any specific way or take care of himself? For people with disabilities who really can overcome barriers and achieve ordinary and sometimes great things, doesn't their association with a person like Danny make them look bad? What could be more stigmatizing for Danny than being set apart as a person who is using up Medicaid funds that should go to people who are more "deserving" and who "can really amount to something"? Even his existence may be an embarrassment for those attempting to show that people with disabilities are worthy of public support.
The Home and Community-Based settings rule from CMS, the federal agency that regulates Medicare and Medicaid, threatens settings most likely to serve people with the most severe disabilities such as center-based work programs, congregate residential programs, day and pre-vocational programs, and other congregate settings that serve more than a few people with disabilities in one place.
State and federal Vocational Rehabilitation (VR) systems are being overhauled by the 2014 federal Work Innovations and Opportunities Act (WIOA). According to proposed regulations for WIOA, “The foundation of the VR program is the principle that individuals with disabilities, including those with the most significant disabilities, are capable of achieving high quality, competitive integrated employment when provided the necessary skills and supports.” These are high expectations, indeed, but simply making that assertion does not change the capabilities of individuals with disabilities. What are we to think of people with disabilities who will not be able to find work under the condition that it be both competitive and integrated with work done by non-disabled people? Are they lazy? Unmotivated? What other excuse could there be?
At an oversight hearing in February 2015, Kathy Greenlee, the head of the federal Administration for Community Living (ACL), testified before the House Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. The ACL includes the Administration on Intellectual and Developmental Disabilities that oversees programs funded by the federal Developmental Disabilities Act. Greenlee stated early on in the hearing that the core idea behind her agency was that people who are aging and adults with disabilities should be able to live independently and participate fully in their communities. Later, (at about 1hour and 38 minutes) she was questioned by Representative Steve Womack from Arkansas about whether the goal of her agency was to eliminate long term care facilities for people with the most severe disabilities. Her response was that “We have become extraordinarily good in this country at serving people with significant disabilities in home settings and we continue to improve our ability over time."
When we look at the facts on how well we, as a country, take care of people with significant disabilities, we may come to a different conclusion:
(from the Madison House Autism Foundation Website via The DD News Blog)
- There are 3.775 million people with Intellectual and Developmental Disabilities (I/DD). 77% of them do not receive publicly funded residential supports.
- Of the 23% (1.127 million people with I/DD), who do receive publicly funded supports, 56% live with family and 44% do not live with family.
- Of the 44% who do not live with family, 27% of those live in their own home. The other 73% live in group homes, foster homes, nursing facilities, and less than 1,000 live in psychiatric facilities.
- 77,000 are on a waiting list for services needed in the next year. 853,000 are living with caregivers aged 60 or over.
According to the 2014 UCP Case for Inclusion, almost 317,000 people are on a waiting list for Home and Community-Based Services.
In Michigan, the Medicaid-funded Home Help program, that is intended to allow people who are aging and people with disabilities to remain in their own homes, is fraught with problems, including low pay for direct care workers who are often poorly trained and not up to performing tasks that are increasingly of a more complex medical nature. Many workers were found to be unreliable. Some workers being paid by the state were felons, although the state seems to have cracked down on this with background checks.
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Before we give ourselves a collective pat on the back for how well we take care of people with significant disabilities, we need a reality check. We can’t take care of people with the most significant disabilities well, if we do not admit that we have far to go before we can claim that “we are extraordinarily good at it”. We can’t take care of people with the most significant disabilities well, if we do not acknowledge, first, that they exist, and then that our expectations of what we would like them to achieve do not magically translate into their being capable of those achievements.
Hope is in my vocabulary, also, but it does not come from believing that Danny and Ian will overcome their disabilities. I know that my sons can be cared for compassionately by people who are up to the task because I have seen it happen and Danny and Ian have had the good fortune to experience some (but not enough) of that. Where do we go from here? We should start with seeking out and learning from individuals with disabilities and their families who experience the heart breaking dysfunction of our system of care and not allow ourselves to be distracted by false ideologies and wishful thinking.
A report released by the U.S. Department of Justice Bureau of Justice Statistics (BJS) on 5/21/15 states that:
“VIOLENT
CRIME RATE IN 2013 AGAINST PERSONS WITH DISABILITIES WAS MORE THAN
DOUBLE THE AGE-ADJUSTED RATE FOR PERSONS WITHOUT DISABILITIES”
Here are excerpts from the report:
These findings are based on BJS’s National Crime Victimization Survey (NCVS), which classifies disabilities according to six limitations: hearing, vision, cognitive, ambulatory, self-care and independent living.
- Persons with cognitive disabilities experienced the highest rate of violent crime (67 per 1,000) among all disability types measured, similar to previous years.
- Serious violent crime—rape or sexual assault, robbery and aggravated assault—accounted for a greater percentage of all violent crime against persons with disabilities (39 percent) than persons without disabilities (29 percent). Nearly a quarter (24 percent) of violent crime victims with disabilities believed they were targeted due to their disability.
- About 51 percent of violent crime against persons with disabilities involved victims with multiple disability types in 2013.
- Nearly half (48 percent) of violent crime against persons with disabilities was reported to police in 2013, similar to that reported for persons without disabilities (44 percent). The reasons persons with disabilities did not report the crime to police were because they dealt with it in another way (44 percent), they believed it was not important enough (21 percent), they believed police wouldn’t help (19 percent) or other reasons (38 percent).
- Nonpolice victim services agencies served more violent crime victims with disabilities (12 percent) than violent crime victims without disabilities (8 percent) in 2013.
“It seems pretty simple: community good, institutions bad. But these two terms have proven extraordinarily difficult to pin down.” ... Amy Lutz
Amy Lutz, the mother of a 16-year old with severe autism, has written an article for Atlantic.com, “Who Decides where Autistic Adults Live?” She covers the controversy over the use of Home and Community-Based Services (HCBS) Medicaid funding for settings that the federal government may deem too institutional in nature or too isolating and segregating. Specifically, she is writing about the use of Medicaid HCBS Waivers (called the Habilitation Supports Waiver - HSW - in Michigan) for individuals who but for the provision of such services would require the level of care provided in a hospital, a nursing facility, or an intermediate care facility for Individuals with Intellectual disabilities (ICF/IDD).
Lutz begins with a description of the Bancroft Lakeside Campus in New Jersey, seemingly ideally suited to the people living there. It may, however, become a victim of the new HCBS settings rule issued in 2014 by the federal Centers for Medicare and Medicaid Services — “Large group homes, farmsteads, and campuses like Lakeside all face possible exclusion.”
The argument over what size a setting should be to receive HCBS funds sounds technical, says Lutz, but “…it touches on a larger question: While many Americans may never need food stamps or unemployment, virtually everyone eventually benefits from Social Security and Medicare. What level of control should the government have over how these subsidies are used? In the case of disabled adults, who should decide what kind of housing best suits their needs? Should it be those individuals and their families, or should it be the state?” [emphasis added]…
Lutz goes through the evolution of institutional care from fifty years ago and emerging alternatives. The 1999 Supreme Court Olmstead Decision determined that unjustified isolation is discrimination based on disability under the Americans with Disabilities Act. Lutz is careful to note, however, that:
“Even advocates of community integration agree that developing meaningful relationships with non-disabled neighbors can be 'a challenge,' as Ari Ne’eman [President of the Autism Self Advocacy Network] put it, and this is especially true when it comes to the most severely afflicted. It’s not a small group: A 2013 study found that over half of autistic kids exhibit aggressive behaviors, which vary in intensity but can be very difficult to treat and tend to continue into adulthood.
"Perhaps it was this population that Supreme Court Justice Ruth Bader Ginsburg was worried about when she carefully crafted her opinion in the 1999 Olmstead case to make it clear that community inclusion might not be right for everyone. Such integrated settings, she wrote, should only be required 'when the State’s treatment professionals have determined that community placement is appropriate' and 'the transfer from institutional care to a less restrictive setting is not opposed by the affected individual.' In other words, forcing developmentally disabled individuals into dispersed community settings that don’t meet their needs is as much a violation of Olmstead as forcing them into institutions." [emphasis added]
This is a long article with many references to innovative programs that use HCBS funds but are now threatened by proponents of an ideology who will not tolerate anything short of “full integration in the community”. Defining what this means, however, has proven difficult, and is most often defined superficially in terms of how many people with disabilities live together and their proximity to people without disabilities.
Amy Lutz is the president of the EASI Foundation, Ending Aggression and Self-Injury in the Developmentally Disabled - “Living with dangerous behaviors is never easy. Finding help should be.”
See also: Olmstead Resources and the Coalition for Community Choice
Michigan Department of Community Health Issues SIS Use Guidance
(from the ARC Michigan Friday Mail)
[The Supports Intensity Scale (SIS) is an assessment instrument from the American Association on Intellectual and Developmental Disabilities (AAIDD). The test measures an individual’s support needs in personal, work-related, and social activities in order to identify and describe the types and intensity of the supports an individual requires. Some families who have been made aware of the assessment do not believe it is appropriate for all levels of disability. Others have found it helpful for person-centered planning.]
The attached file (Waldrop v. New Mexico Human Services), contains the findings from a SIS lawsuit that was filed in New Mexico. It says that if the state wants to use the SIS to determine services (which is what it is not supposed to be used for in Michigan), then individuals are entitled to advanced notice and Medicaid Fair Hearings.
Earlier this week Thomas Renwick, Director of the Bureau of Community Based Services, BHDDA, issued a clarification on use of the Michigan Supports Implementation Scale (SIS).
In his memo, Mr. Renwick indicated that “The SIS should be used to enhance and support the person-centered planning process. As with all assessments, the SIS is voluntary and should not be tied to determinations of medical necessity and the authorization of behavioral health services. Supports and services cannot be denied, reduced or discontinued if a consumer and/or guardian refuse to cooperate with the assessment process.”
Mr. Renwick also indicated that the Michigan Department of Community Health’s (MDCH) SIS workgroup was finalizing the Michigan SIS Implementation Manual, which will serve as a guide in outlining the requirements and procedures related to the implementation of the SIS in Michigan.
Persons with questions regarding SIS implementation should contact Belinda Hawks at hawksb@michigan.gov.
This was a 2nd meeting to answer questions about services for people with developmental disabilities provided by the Washtenaw County Community Mental Health (CMH) agency. The subject of the meeting was the review of Community Living Services provided by CMH and pay rates for people using Self-Determination. The meeting was attended by about 50 people at St. Luke Lutheran Church in Ann Arbor on 5/7/15.
Handouts included:
The Washtenaw County Behavioral Health Task Force Report Frequently Asked Questions
Community Living supports Frequently Asked Questions
Self-Determination: Frequently Asked Questions on pay rates
[The Washtenaw Community Health Organization (WCHO) is currently the name of the CMH agency for Washtenaw County. This will be changing in October 2015 when the agency is reorganized and becomes a CMH agency controlled by county government.]
For further clarification on how changes may affect you or your family member, contact your supports coordinator or other members of the team assisting you with CMH services.
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This was mostly a question and answer session, with a lot of questions about the budget for the WCHO that has a $3.8 million deficit out of a total of over $80 million.
The WCHO has given assurances that the amount, duration, and scope of services to individuals will not be cut. However, from the last meeting it was clear that the Individual Plans of Service (IPOS) will be reviewed to assure that Medical necessity criteria are being applied. Services can be reduced if the WCHO can justify it on the basis that they do not meet criteria for medical necessity. [This has always been true for Medicaid services. One question to ask is what has changed, if you are being told that a service no longer meets the medical necessity criteria?]
Question: If this is a budget problem, where is the budget being cut? Answer: There have been staff changes and many positions will be left open. Presumably, costs may be cut by finding services that are determined to not be medically necessary. The WCHO advises people to work with their clinical team and their fiscal intermediaries to handle changes.
Self-Determination direct care providers will receive lower rates set by the PIHP (Prepaid Inpatient Health Plan) [PIHPs are regional administrative agencies that pass on Medicaid funds to local CMH agencies] - the CMH Partnership of Southeastern Michigan. Previously, administrative fees, workers compensation, and other charges were supplemented with other funds, but this will no longer be the case.
Question: Is the Message that Self-Determination is being eliminated? WCHO: No, the agency is still offering this as an option. [The main concern, however, is that a reduced pay rate could make it more difficult to hire and retain workers] Individuals may choose to go back to a more traditional way of providing services through the CMH with less individual control of how or by whom services are provided.
Medicaid Funding:
Ironically, the improving economy leads to less federal funding for medicaid because federal Medicaid matching funds decrease. CMH has done better when the economy is poor.
There are 33,000 Medicaid enrollees in Washtenaw County. Capitation is the part of funding available that is conditioned on a set amount per person.
Healthy Michigan is Michigan’s version of Medicaid expansion under the Affordable Care Act. It covers people with incomes at or below 133% of the federal poverty level ($16,000 for a single person or $33,000 for a family of four). this means that there are a lot more people covered by Medicaid, many of whom have needs for mental health services, but the rate paid is lower under Healthy Michigan than that paid for people already qualifying for regular Medicaid. This results overall in less funding for people needing mental health services, but more people needing these services.
Comment: If we spend less now, less funding will be available in the future to the extent that it is based on current spending. WCHO: The IPOS process will not change.
Comment and Question: Are Cuts expected in future years? Are we going toward a system that gives a given sum of money to families ($20,000/year?) to spend as they choose?
Question: When rate changes for Self-Determination were contemplated, why wasn’t the community brought in? Answer: Decisions were made in public meetings of the PIHP with time allowed for public comment. No special announcements were made.
Complaint: The rate change is a done deal, that we are being informed of, but we were not included initially in making the decision.
Question: Who is the leadership for the WCHO and why were we not being well-represented when decision to lower rates was decided? [The higher cost of living in Washtenaw County should be taken into account.] Are the people making the decision elected? Answer: The WCHO was represented by the Executive Director and others hired by the WCHO board. The Board is not elected. [It does include people with disabilities and family members of people with disabilities.]
Question on “Goods and Services” for Self-Determination: Can unused Goods and Services money be used to fill in the gaps? Answer: WCHO is not sure.
[FYI: “The purpose of Goods and Services is to promote individual control over, and flexible use of, the individual budget by the HSW beneficiary using arrangements that support self-determination and facilitate creative use of funds to accomplish the goals identified in the individual plan of services (IPOS) through achieving better value or an improved outcome. …A Goods and services item must be identified using a person-centered planning process, meet medical necessity criteria, and be documented in the IPOS [Individual Plan of Service]” This is from the Michigan Medicaid Provider Manual, page 979 of the PDF file that is available on-line. I have been told never to click on print when looking at this document. It is 1,840 pages long.]
Question on the Children’s Waiver: This is a state-run, fee-for-service waiver, with the funding coming from the state. So why is the rate for those worker’s being reduced? Answer: The WCHO uses General Fund dollars [these are state funds that are not designated for a specific purpose such as education, transportation, corrections, etc.] to supplement the rate if it is different than what the state allocates. General Fund dollars now available for the WCHO is less that $1million, a very small amount compared to what is needed to maintain services to people relying on general fund dollars.
WCHO Board and Committee Meetings for 2015
CMH Partnership of Southeastern Michigan meeting information
Corrections and comments welcome!
Another day in the Emergency Room with Danny. Ho hum. What are you gonna do?
Three days ago, Danny threw up what appeared to be blood, so off he went to the Emergency Room at our local world-famous medical facility. When you need expert medical advice and specialized care, it is a fabulous institution. And it is an “institution” in the best and worst sense that the word is commonly understood. But the ER on a Monday afternoon can be a horror show.
Danny arrived at the ER with a staff person from the group home. I got there a couple of hours later and the place was jam-packed. There were sick people everywhere and ambulances pulled up every ten minutes or so with patients who had priority over the people who arrived there on their own. We waited and waited, but there was very little progress for people waiting to be seen by a doctor. The only thing that was happening was that a lot of people were called in to have their blood drawn and then were disgorged back again into the waiting room.
After I had been there for an hour or so, a man sitting in the crowd keeled over. He was having a terrible time breathing and he threw up on the floor. By this time the waiting room had become a small community of groaners, complainers, and the worried well. When the man hit the floor we were admonished by another ill and miserable person to pray for the man on the floor. I prayed that he would be removed as quickly as possible and given some help with his breathing. The ER team swooped in with a stretcher to take him into the inner sanctum.
As the hours went by, someone saw the man who keeled over walk by in the hallway. As someone announced to the group that the man was OK, we heaved a collective sigh of relief.
At one point, about six people decided they would rather die at home than in the ER; they rose as one and left. Our small community had shrunk but we were now, on average, sicker and more pathetic than before. Danny suddenly had a desperate need to have his brief changed, so we were allowed to come into the inner chambers to occupy the smallest space possible to get him taken care of. An older woman who had waited about 9 hours was finally wheeled in to see a doctor. She waved to the crowd. We waved back and wished her well. At about 10 pm Danny officially entered into the care of the ER where he would remain until 7 the next morning when a hospital room was finally available for him to be admitted.
There is much to be said about his hospitalization, but for now, it is enough to say that Danny will be OK and will soon go back to his group home.
A Crowded ER - Not Just a Local Problem
Sitting around in the hospital room, I discovered that the problem of overcrowded emergency rooms was not confined to my own sprawling medical facility. In an editorial in the New York Times for 5/6/15, Ezekiel J. Emanuel wrote on the subject, “How to Solve the E.R. Problem”.
He explains that one of the selling points of health care reform (Obamacare) was that by expanding insurance coverage, the unnecessary use of emergency rooms would decrease as preventive care became more available. It turns out that increasing insurance coverage alone was not sufficient to reduce the overuse of emergency rooms. In fact, the opposite has been true: major surveys have shown substantial increases in ER use, probably because newly insured people no longer have a co-pay for ER use.
Emanuel finds hope, however, in a Seattle partnership: “…Group Health Cooperative of Puget Sound, a nonprofit that provides health care and insurance, and SEIU Healthcare NW Health Benefits Trust, which delivers health benefits to thousands of home health care workers, have reduced emergency room use among a subset of the trust’s membership by 27 percent over four years.”
The partnership's approach is this: “First, it offers a $100 cash incentive if workers complete four steps. The steps evolve each year but have included signing up for MyGroupHealth, an online platform where workers can email doctors, order prescriptions, and access health information and self-help resources; completing a 'health risk assessment,' a tool commonly used in corporate wellness programs; and completing preventive primary care and dental appointments.” Then it raised the co-pay for an ER visit to $200, a strong disincentive to use the ER if you have an alternative.
If you read the article, look at the comments, also. They provide an interesting critique of Emanuel's editorial.
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| ...and survive! |
