Tuesday, June 23, 2015

Negative effects of Maine's Conversion from Sheltered Workshops to Integrated Employment

This is from ACCSES, a national organization representing disability services providers.

“When you look at what happened in Maine – overall employment rates declined, hours worked per week declined, day habilitation rates increased – you really have to wonder how this benefits people with disabilities – particularly those with multiple, significant disabilities,” 

Terry Farmer, CEO of ACCSES

June 23, 2015

Report on the Impact of the Conversion from Sheltered Workshops to Integrated Employment

The CHIMES Foundation and The George Washington University
Release a Case Study on Maine Public Law Chapter 101


Washington, DC (June 23, 2015) –  ACCSES applauds the recent case study undertaken by the CHIMES Foundation and researchers from The George Washington University regarding the impact of Maine Public Law Chapter 101, which directed state agencies to increase supported and integrated employment opportunities for people with disabilities and ultimately close its sheltered workshops.  This report, Transitions: A Case Study of the Conversion from Sheltered Workshops to Integrated Employment in Maine, studied the experience of people with significant disabilities who were employed by sheltered workshops as well as providers who formerly operated sheltered workshops in Maine. Approved by the GWU University Institutional Review Board, this study outlining the experience in Maine can serve as a guidepost for policymakers in other states.

The study was undertaken to address the following questions:

  1. Was Maine’s transition successful in moving people who had been working in sheltered workshops into integrated employment settings?
  2. Were people who were transitioned from sheltered to competitive employment between 2002 and 2007 when the transition was taking place still competitively employed in 2014?
  3. How do the wages of those people who were able to successfully transition compare pre and post transition?
  4. Did the provider cost of providing employment services increase or decrease pre and post transition?
Key findings in the report include:
  • People who had been employed in sheltered workshops have seen their hours worked per week decline.  2/3rds of those previously employed are no longer employed and those who are working earn less per week because of the reduction in the number of hours worked.
  • In 2008, the year Maine Public Law Chapter 101 went into effect, 39.5% of people with disabilities were employed.  That number dropped to 34.1% by 2012.
  • Sheltered workshops in Maine were employing 558 people with Intellectual and Developmental Disabilities (IDD) in 2001.  There were no people employed in sheltered workshops in 2010.  The number of people with IDD who were served in integrated employment in Maine also declined during the years from 2001 to 2014.
  • Employment data for people with intellectual disabilities in Maine show an average of only 12 hours worked per week in 2011, the lowest in the nation.
  • After the passage of the law, non-work placements increased dramatically from 550 to 3,178.
  • Level of disability was one characteristic commonly cited as a factor impeding placements for some people who are no longer employed.
  • ACCSES, the voice of more than 1,200 disability service providers across the nation, urges lawmakers and the public to learn more about the impact of eliminating work opportunities.
...Many of the organizations that helped craft the Transition to Independence Act actively lobby to eliminate sheltered workshops and the employment opportunities that come with them.  ACCSES looks forward to working with Senator Grassley and the co-sponsors of the Transition to Independence Act to ensure that the benchmark outcomes truly support positive transition so that those in the demonstration states don’t end up like those in Maine.

Monday, June 22, 2015

Some seniors imprisoned by their independence

People who have severe developmental disabilities, mental illness, or physical disabilities with medical complications, or any combination of these, face similar problems with obtaining appropriate services and with assumptions made about them by people who are unable or unwilling to see them as individuals with differing needs. The same goes for people who are aging. ["Aging" seems to be the term I am supposed to use to talk about people like myself who are old and getting older by the minute. Apparently, some people are offended by the "O"-word.]

In an article in the New York Times, “At Home, Many Seniors Are Imprisoned by Their Independence", 6/19/15, Paula Span examines the conundrum of older people who have managed to “age in place” but find that when their physical or mental condition gets worse, they lack the care and support they need to engage in a life outside of their own homes.

According to a report in JAMA Internal Medicine, “Almost two million people over age 65, or nearly 6 percent of those Americans (excluding nursing home residents), rarely or never leave their homes...The homebound far outnumber the 1.4 million residents of nursing homes.” [Homebound is defined as those who have not left their homes at all or had gone out no more than once a week.]

People who are homebound are sicker and have more dementia and depression than those who are not. Their ability to get out depends on the accessibility of their physical environment and whether they have assistance to help them get out safely to the places they desire to go.

Span also mentions that a 2011 study on unmet needs of older Americans “…turned up an interesting comparison: When the researchers controlled for demographic characteristics and health and function, people in assisted living facilities actually got outside more often than those in their own homes.”

While the ideal of "aging in place" may be the desired goal of most older Americans, “…older adults’ desire for familiar surroundings, and their fear of institutionalization and its financial burdens, have apparently led millions to fight to remain in homes they can rarely leave. Our national celebration of independence as a value may not help.”...

Amy Murray of the Carter Burden Center for the Aging in New York adds that “Remaining at home, however difficult or isolating that becomes, gives older people a sense of control that may prove illusory...They feel like they have their freedom even though they don’t, really."

All this is relevant to the current push to get people with developmental disabilities out of congregate settings including institutions, group homes, center-based day programs, and planned communities designed for people with autism and other developmental disabilities. For some people the "freedom" to live in the community adds to feelings of isolation and a loss of connection.

Thursday, June 18, 2015

Service dog comforts woman with Asperger's Syndrome

Danielle Jacobs, a 24-year-old woman from Tempe, AZ, posted this video on YouTube to show what it's like to have Asperger's Syndrome. It shows her service dog comforting her during a meltdown.

From BuzzFeed News :

Danielle said that she got Samson, a 4-year-old rottweiler, from HALO animal rescue in Phoenix after several evaluations and assessments.

She said: “I immediately began training him for service work for Asperger’s syndrome, PTSD, TBI, and anxiety disorder. He alerts to meltdowns, anger, depressive episodes, flashbacks and nightmares, stimming, provides balance and counterbalance, and alerts to panic attacks.”

Tuesday, June 16, 2015

Georgia : Deaths following deinstitutionalization raise alarms and fears about the adequacy of community care

Tom Corwin and Sandy Hodson of The Augusta Chronicle wrote a series of articles on the transfer of people with mental illness and intellectual and developmental disabilities from state institutions to community placements. These transfers were done under a settlement agreement that Georgia reached with the U. S. Department of Justice in 2010 as part of the DOJ’s policy of aggressive enforcement of the Supreme Court 1999 Olmstead decision. Although the Olmstead decision determined that unjustified isolation is discrimination based on disability, it also recognized a role for institutional care and the necessity for the state to maintain a range of options for people with disabilities. It also required that people be removed from institutional care only when they do not oppose the transfer to community care.

The Olmstead decision has been widely misinterpreted as a mandate for community care for all.

The Augusta Chronicle discovered that nearly 1,000 patients had died in community care in the past two years and that a majority of the unexpected deaths were among patients with developmental disabilities. In this story, “Girl’s death among 500 in one year in community care”,  3/21/15, the reporters traced the fate of a 12-year-old girl removed from facility care against the wishes of her mother to an understaffed “host home”. This was followed by multiple hospitalizations, a broken leg, mismanaged medications, and finally her death. The mother demanded an autopsy but this was never done. Two months after the girl died, a cause of death had not been determined.

Follow the links to the other stories in this series. The reporters did an excellent job of putting together all the pieces and presenting them with attention to detail as well as giving an overall perspective on the problems in Georgia with community care and the agencies that are supposed to protect the health and safety of vulnerable people.

Monday, June 15, 2015

How Washington Works...

Having spent most of last week in Washington, D.C., I think this quote from Senator Elizabeth Warren sums up how Washington works

“If you don’t have a seat at the table, you’re probably on the menu..." 

Monday, June 1, 2015

Stigmatizing people with serious mental illness and severe developmental disabilities

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.


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.