This is a press release on Michigan Governor Rick Snyder's Website from Monday, December 29, 2014:
LANSING, Mich. – Universities will get funding to help health care professionals better help patients with autism spectrum disorders, and families with autistic members will have access to additional resources under a bill signed into law by Gov. Rick Snyder.
House Bill 5742, sponsored by state Rep. Margaret O’Brien and approved with strong bipartisan support, amends the Autism Coverage Reimbursement Act to allow for the one-time expenditure of up to $4 million for help universities train health care professionals to assess, diagnose and provide treatment to people with autism spectrum disorders.
The bill also provides $1.5 million for the Autism Alliance of Michigan through the Michigan Department of Community Health to provide assistance and resources for families dealing with the disorder.
“We’re working to build a stronger provider network to help people who cope with autism spectrum disorders and their families and provide assistance for families,” Snyder said. “For years, Michigan families struggled to find the help they’ve needed. I appreciate Lt. Gov. Brian Calley’s efforts to work with our partners in the Legislature to improve access and insurance coverage.”
The bill amends the Autism Coverage Reimbursement Act, signed into law by Calley in 2012, to now provide $3 million to Western Michigan University and continue providing $500,000 to Central Michigan and Oakland universities.
It is now Public Act 401of 2014...
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According to an AP report on the CBS Detroit Website, 12/29/14:
"The fund was created in 2012 to reimburse health insurance companies for the cost of benefits covering the diagnosis and treatment of autism spectrum disorders. But insurers haven’t filed nearly as many claims as expected."
I have recently begun to follow a New York Times reporter, Paula Span, at The New York Times Blog “The New Old Age - Caring and Coping”. Paula Span covers issues relating to seniors and their caregivers, who, as it turns out have some things in common with people with developmental disabilities and their caregivers.
A recent column by Span, “Dementia, but Prettier”, is a comment on movies that tackle the subject of dementia. She notes that many attractive actresses have taken the leading roles of people being swallowed up by this progressively disabling condition. While praising the acting and some of the films on dementia, Span has doubts that caregivers will see these movies as anything but prettied-up versions of real-life that disguise and deny the realities of the experience.
In another recent blog post, “Unmet Needs Continue to Pile Up” 12/9/14, Span discusses a recent study that compares how well or poorly seniors do in terms of how many needs go unmet across a continuum of living situations. As Span explains,”’Unmet needs,’ …refers to care or help you require but don’t get. If, when you’re elderly or disabled, you aren’t able to shop or cook, you lack the strength to go outside, you can’t keep track of your bank account or your medications — and no one assists you with those functions — you have unmet needs.”
In the debate about whether congregate care can provide people with disabilities the care they need and “integration appropriate to their needs”, the study offers some insight: it all depends on how needy the person is and how well those needs can be met satisfactorily over the continuum. Span also asks the question of whether moving into an assisted living facility or nursing home is worth the extra costs involved in meeting the needs of seniors - “…how often those supposed solutions actually provide enough services to merit their very high price tags. When someone is spending $3,500 a month for assisted living… are there fewer activities the resident can’t manage? Does he or she have fewer unmet needs?”
The national study is entitled “The Residential Continuum From Home to Nursing Home: Size, Characteristics and Unmet Needs of Older Adults”. It is published in the Journals of Gerontology, and the authors are Vicki A. Freedman (from our own Institute for Social Research at the University of Michigan) and Brenda C. Spillman. Here are the results of the study as published in the abstract for the Journal:
"Of 38.1 million Medicare beneficiaries ages 65 and older, 5.5 million (15%) live in settings other than traditional housing: 2.5 million in retirement or senior housing communities, nearly 1 million in independent- and 1 million in assisted-living settings, and 1.1 million in nursing homes. The prevalence of assistance is higher and physical and cognitive capacity lower in each successive setting. Unmet needs are common in traditional community housing [living in one's own home] (31%), but most prevalent in retirement or senior housing (37%) and assisted living settings (42%). After controlling for differences in resident characteristics across settings, those in retirement or senior housing communities have a higher likelihood of unmet needs than those in traditional community housing, while those in independent or assisted living settings have a lower relative likelihood." [emphasis added]
Although it is apparent at first glance that people have more unmet needs in congregate care, the numbers need to be adjusted to take into consideration the higher need for physical assistance and the lower cognitive capacity of seniors in congregate care. This translates into a lower prevalence of unmet needs in congregate care. This adjustment for the severity of the disabilities, the increasing needs that go with severity, and how well those needs are met over a continuum of settings is often missing in discussions of where is the best setting for people with disabilities to live.
On the issue of costs, Span says of the study result,
“…[it] looks like a classic good news/bad news finding. On the one hand, seniors and families are getting something for that $3,500 a month and more (frequently way more) in assisted living: Even though they are older and more physically and cognitively impaired, they don’t have more unmet needs than younger, healthier seniors in their own homes.
“The bad news, though, is that unmet needs remain too high in all these settings. In their own homes, in senior housing and retirement communities, in assisted living, lots of people aren’t getting the help they manifestly need.”
[Here is a link to a Website that tells you more than you ever wanted to know about implementation of the new HCBS rule. These are previous blog posts on the subject of the new rule and its repercussions.]
The federal Home and Community Based settings rule places the individual with a disability at the center of a Person Centered Planning process. This is as it should be, allowing for the reality that many people with intellectual and developmental disabilities are limited in their ability to make or communicate decisions for themselves or to exercise their rights on their own behalf and for whom legal guardianship may be necessary. With my own sons, who have profound physical and intellectual disabilities this is certainly the case. Were my husband and I not able to represent their interests through the authority that we have as legal guardians, they would be continually at the mercy of whomever was in control of a particular situation - group home staff, a community mental health agency, the provider agency that staffs the group home, medical personnel, etc. We include in this group some disability advocates who claim to know our sons needs better than we do. Some even claim that it is possible to interpret our sons' facial expressions and body language as intentional communication that confirms the advocates’ notion of what choices are best for them.
Most guardians of people with developmental disabilities are parents, siblings, or family friends of the person with DD. They are not perfect and they make mistakes as often as the next person. The difference between family members and friends and all other acquaintances, professionals, and advocates who wish to weigh in on how other people should live their lives is that when things go wrong family and friends feel it personally and are usually quick to react in ways that make things better. Others who are not so personally connected may not be around to suffer the consequences of their own and other peoples mistakes. They also have their own interests to think about, a perfectly human trait that does not necessarily make them bad people. People who know our sons and care about them are often invaluable to us in making informed decisions for our sons.
Guardianship for people with DD in Michigan is under the jurisdiction of state probate courts that are required to follow state law. Built into state law are numerous protections for the individual and procedures designed to assure the accountability of guardians. Here is a the Washtenaw Trial Court Website on guardianship with links to pertinent sections of the the Michigan Mental Health Code.
The HCB settings rule confirms the authority of court-appointed legal guardians to make decisions authorized by state courts. People with disabilities who do not have legal guardians may chose someone to represent them in the person centered planning process: “In §441.671, we proposed to define the term ‘individual’s representative’ to encompass any party who is authorized to represent the individual for the purpose of making personal or health care decisions, either under state law or under the policies of the State Medicaid agency. We did not propose to regulate the relationship between an individual enrolled in the State plan HCBS benefit and his or her authorized representative, but noted that states should have policies to assess for abuse or excessive control and ensure that representatives conform to applicable state requirements.” [p. 2994 of the Federal Register of 1/16/2014; Definition of Individual’s Representative] [emphasis added]
In addition, is this comment on the authority of legal guardians: “We note that where a legal guardian, conservator, or other person has the sole authority under state law to make decisions related to the individual’s care, the state must comply with the decisions of the legal surrogate.” [p. 2995 of the Federal Register of 1/16/2014; Definition of Individual’s Representative][emphasis added]
Furthermore, under §441.740 of the final rule on Self-Directed Services (or Self-Determination as it is known in Michigan), the rule states that, “the state may choose to offer an election for self-directing HCBS. The term ‘self-directed’ means…services that are planned and purchased under the directions and control of the individual, including the amount, duration, scope, provider, and location of the HCBS. For purposes of this paragraph, individual means the individual and, if applicable, the individual’s representative as defined in § 441.735.” [p.3038 of the Federal Register of 1/16/2014, § 441.740 Self-directed services] [emphasis added]
In other words, state Medicaid agencies may have policies to regulate the qualifications of someone who has been chosen by the individual as a representative, but the qualifications of court-appointed guardians and the monitoring of their conduct remains under the jurisdiction of state courts, not the state Medicaid agency.
We no longer have small children in the house to wake us up early on Christmas morning. To keep our adrenalin flowing and to make sure we are always alert and ready to swing into action to handle whatever emergency presents itself, we rely on random phone calls from our sons' group home.
At 8 a.m. the phone rang. It was the group home: Danny was having seizures, the ambulance was on its way to the hospital with him in it, and one of the group home staff was driving over there to meet him when the ambulance arrived.
There’s nothing unusual here - just another holiday in the life of the Barker boys. If anything can go wrong, it is more than likely to happen on a big holiday when no one is available to handle an emergency other than a fully equipped and staffed emergency room attached to a gigantic medical center.
There was the Christmas Eve more than ten years ago, when my husband picked Danny up at his group for our big Christmas Eve dinner celebration. John pulled into our garage with Danny in the van in his wheelchair. Then he opened the van door, lowered the lift to the floor, and absent mindedly climbed back in and unhooked the wheelchair. He then proceeded to launch poor Danny straight out of the van and onto the floor of the garage, a fall of about three feet. Danny hit his head on the floor but was somewhat protected by the angle of the fall and his wheelchair.
The goose egg on Danny’s head was not nearly as alarming as the fact that he did not cry out or complain. He just looked ashen and was very quiet (he was probably thinking “I can’t believe what just happened”). We put him back in the van and John took off for the ER. He was torn between feelings of guilt that he had been so careless and and anger at the long wait in the ER with a Christmas ham waiting at home. As is usually the case, everyone survived and everything returned to life as we know it.
This morning, Danny had a repeat of an episode with seizures from six months ago: he was having 15-second seizures about once a minute, a scary scenario for the staff who had not seen this happen more than once, if at all. He probably did not need to come to the ER to stop the seizures – the group home was supposed to have extra seizure medication on hand for such occasions, but it turned out to be a good thing that he ended up in the ER. An X-ray of his lungs showed the beginnings of pneumonia; he also had an elevated sodium level that was probably from dehydration - he was getting sick and needed more fluids. All this lowered his threshold for seizures.
Danny had been given medication by the ambulance crew to stop the seizures and was mostly sleeping or very subdued for a long time. It soon became clear that he could go home with antibiotics. As he gradually woke up and became his usual wild man self, flailing around, making rude noises, and expressing his exuberance for life, the nurse came in and said, “Oh, no! He’s having a seizure!” Fortunately, his caregiver from the group home was able to confirm that he was just getting back to normal.
The only other time he had pneumonia, was many years ago on - you guessed it - Thanksgiving. Then, as now, everyone survived and life went on.
Here is more from Benjamin's Hope, a planned community housing project for adults with autism and other developmental disabilities in Holland, Michigan.
The following article appears in the Ben's Hope 2014 Winter Newsletter. The inspiration for the project and what it hopes to achieve is reflected here. It dispels the notion that communities like Ben's Hope isolate people from their surrounding community and that congregate care is inherently discriminatory against the people who live there. For more information and background on the ideological battles that Ben's Hope has had to endure, see these blogposts (here and here).
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Why Do They Come?
There is something exuberant about life around Benjamin's Hope
Sunday evenings in the summertime found 100+ people worshiping together, under a tent. September's Firelight festival welcomed more than 1,000 friends from all over Western Michigan to enjoy hayrides, music, alpacas, and bonfires. And, by mid-winter, 24 people will call Ben's Hope home.
Benjamin's Hope is bringing people together.
The impact of Benjamin's Hope stretches far beyond the men and women who have chosen to live here. We see evidence of it in the people who come. Classrooms from West Ottawa Schools, kids from Camp Geneva, quilters from Christ Memorial Church, and students from Hope College. People young and old. People with disability and people without. Which leads me to ponder, what is the common draw? Why do they come?
Consider the tag line below our logo. "A Place Where We All Belong." This is our answer.
Life runs at a frantic pace. We gauge a day's success by what we have accomplished, our worth too often determined by how we compare to the person next to us.
Is it any wonder that we yearn for a place where we are accepted not for what we do, but simply because we are?
Ben's Hope beckons us to come just as we are. It gives us permission to slow down. From the moment we turn in the drive we are greeted by the Ben's Hope sign assuring us that we have found a place where we all belong.
Awhile back I received a Face Book message from Elizabeth. Elizabeth and her support dog, Mitchell, regularly attend our weekly worship service called The Gathering. Her words beautifully express why she chooses to spend time at Ben's Hope.
"…The Gathering is the best hour of my whole week! I can be around people like me and people who love people like me and I don't have to hide who I am for a whole hour. I love being there. It feels like home, ok?"
So many of you have helped to create this extraordinary place that is so much more than bricks and mortar. Thank you. Benjamin's Hope is an oasis that waters our soul and reminds us to press forward in Hope.
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In case you might be wondering, I do not have any personal stake in the success or lack of success of Ben's Hope. Some advocacy groups have virulently opposed any and all congregate settings, expressing a fear that this type of living will be imposed on others with disabilities who do not want it. I have not heard anyone involved with this or other family-initiated housing projects express a desire to impose their will on others and I suspect they have neither the time, influence, nor energy to do so. --JB
[This is an article from the Benjamin's Hope 2014 Winter Newsletter. Ben's Hope is a faith-based community model in Holland, Michigan, "designed to address the multifaceted needs of
individuals and families affected by autism and developmental
disability." By mid-winter, Ben's Hope will house 24 people in six four-person group homes.]
Policy debate rages about where people with developmental disabilities should live. Urban settings? Rural? Alone or with people? People who are similar? Or, people who are different? Where should the Medicaid dollars be used?
Ultimately it comes down to a discussion about community. what characteristics define community? Who defines community?
At a time when we face a critical shortage of housing options for individuals with developmental disabilities, we also face virulent advocates and policy makers purporting that individuals with disabilities who utilize public funding should not be permitted the choice to live in a setting like Benjamin's Hope, asserting that such settings isolate people. These advocates seek to influence policy to prohibit people with disability the right to use funding to which they are entitled in their setting of choice.
At the 1990 signing of the Americans with Disabilities Act, President George Bush stated, "Today's legislation brings us closer to that day when no Americans will ever again be deprived of their basic guarantees of life, liberty, and the pursuit of happiness."
Yet, in March 2014 the Center for Medicare and Medicaid Services issued Home and Community Based Service rules that oppress innovative, fiscally responsible models that are in high demand by individuals with disabilities and their families. This rule effectively narrows choice.
When asked to share why he has chosen to live at Benjamin's Hope, Lucas VanderKolk (19) wrote these words:
bens hope is a place where everyone is welcome not only to residents but to the community also. I don't have to be scared of not fitting in because everyone is welcome.
I don't have that fear of sticking out like a sore thumb, because it's a place where everyone is welcome and people don't look at me funny or think that I'm stupid because I'm special needs. I never thought there would be such a place like bens hope. I don't have to hide anything ever, i don't have to worry about not fitting in.
I may be different but here at bens hope different is good and i am welcome unlike other places i just fell like i don't and can't fit in but at bens hope i don't have to worry about any of that.
By taking away choice, we stand in danger of returning to a day when people with disability had no voice. Let's not repeat the mistakes of history. Stand with us in protecting the rights of people with disabilities to define for themselves what community means.
Lucas, we hear you.
[This is a slightly modified version of an article in the VOR Weekly News Update for 12/5/14.]
From the Public Insight Network:
"Next year will mark the 25th anniversary of the Americans with Disabilities Act (ADA). As newsrooms gear up to cover this issue, The Public Insight Network of American Public Media wants to know what it is like to live with a disability 25 years after the Americans with Disabilities Act was passed?
"Have you seen things change since the ADA became law? Do you or someone you know still face discrimination because of a disability?
"Share your insight. This link will take you to the Public Insight Network (PIN) survey page.
"Sharing your experience will help shape how PIN partner newsrooms cover this issue. We will not publish your response without your permission."
Why is this relevant?
Olmstead is the Supreme Court decision that interprets the Americans with Disabilities Act (ADA) and what constitutes discrimination with regard to community placement. Many VOR members have faced “Olmstead implementation” actions that are contrary to the letter and spirit of Olmstead when these actions displace individuals from facility-based settings without regard to choice and need. Similar actions are being taken to limit access to and close community congregate programs and services that serve more than 3 or 4 people with disabilities in a group setting.
The Public Insight Survey is an opportunity to help journalists appreciate this aspect of ADA implementation. In VOR’s view, the ADA has helped many individuals with disabilities access public places and employment, thereby improving public awareness; however, many individuals who require access to specialized residential, employment, health care, education, therapies and other services have suffered. The problem is not the ADA itself, but the pursuit of a "community for ALL" ideology ("forced deinstitutionalization"), without regard to individual need, choice or quality of care. These "deinstitutionalization" actions, which separate people from specialized residential, employment, and education services, are done in ADA's name but are expressly contrary to the landmark decision interpreting ADA community placement requirements, Olmstead. News stories too often focus on the community v. institution debate (surface level) without considering HOW people are being served.
In your responses, you are encouraged to include www.vor.net as a resource for journalists.
Your survey responses should be your own, whether or not you share VOR’s perspective.
Take the SHORT survey here
[These are videos from the San Francisco Bay Area Autism Society housing conference, May 10, 2014.]
Part 1: Autism / Developmental Disability Housing Options: The Growing Need
...Soaring demand with lack of housing options
Part 2: Housing Options: Single-Family Home Based Models
...Overview of autism/DD housing options based on a single-family home
model, including living with parents, legacy homes, licensed group
homes, unlicensed co-ops and adult foster care.
Part 3: Housing Options: Multiplex and Intentional Community Models
...Overview of autism/DD housing options based on multifamily or
congregate models, including market-rate apartments, affordable
"set-aside" units, investment-based multifamily complexes, and
nonprofit intentional communities.
Part 4: Needed Policy Changes
...Overview of many of the policy changes necessary to
facilitate the creation of new housing options for adults with autism
or developmental disability.
[This is from the Fall 2014 VOR print newsletter, "The Voice - news and views of VOR Supporters". Helen Norcross lives in Wyoming.]
Helen Norcross is a firm believer in community integration and a person-centered approach to planning care.
She has been a lifelong advocate for her son, Josh, who has profound behavioral challenges, and recently quit her job in corrections/treatment to work for the Wyoming Independent Living Center.
She knows how integration should look for her Josh, but seriously questions whether the State of Wyoming does.
"For me, community integration and true inclusion means my son is provided with opportunities to live his life to the fullest extent of his abilities while keeping him and others in our community safe," explains Norcross. "It's about really focusing on Josh. It's about person-centered supports, with an emphasis on the person."
Josh's early years
For years, Helen and her family attempted to strike a balance between integration and safety. This involved wiring her family home with buzzers so that they knew where her son was at all times.
"Josh's disabilities make him unsafe for other people and animals," shared Norcross. "We had a responsibility to keep our younger son safe, as well as our understanding neighbors. Still, to live with alarms that the whole neighborhood could hear if Josh went out the door was exhausting and stressful --and certainly did not mean 'community integration' for him."
As Josh grew so did his challenges and needs. "We were all prisoners in our own home, completely isolated," she said.
So, Norcross called in that promise made by the State so many years ago when they adopted Josh, only to find that he along with about 500 other eligible Wyomians with disabilities, faced years of waiting.
Hope evaporates
In March 2014, after over a year of back-and-forth negotiations, the State had finally approved Josh's waiver application as an "emergency case," and, recognizing Josh's profound needs approved funding at the highest level of care and supervision allowed under the waiver.
With approval in hand, Norcross set out to find a provider willing to serve Josh. After 3 months of looking and rejecting providers, or being rejected by providers that did not have the staff or experience necessary, a quality provider was identified and willing to serve Josh and, much to the gratitude of the Norcrosses, also provide for day habilitation which his waiver funding did not cover.
However, Norcross' diligence in finding the right provider for Josh's needs--a person-centered approach to delivering services--backfired because not enough money was spent on Josh's care while Norcross was looking for a provider. The Wyoming Behavioral Health Department assumed Josh did not need these services and significantly cut his approved funding.
"No one thought to call me," said Norcross. "I could have told the Department that the services were not used because I was still trying to find a provider. Josh's needs certainly didn't change. Yet, we were back to square one."
She now wonders just how the Wyoming Behavioral Department defines "person-centered." Having worked in treatment for so many years and also raising Josh, Norcross understands the person-centered approach better than most.
"I've had intensive training in this approach and have seen it work with the most challenging individuals," Norcross said. "It's really about treating people like people and respecting differences in choices and needs."
The Journey Continues
Norcross continues to advocate for Josh using a person-centered approach and will fight to make sure that all funding taken from his Plan of Care will be restored.
Still, she is frustrated by the fight and worries for other families who don't know the system as well.
"Because Josh's behaviors affect other people, putting the community at risk if funds are not restored, there should be urgency to getting him appropriate care," said Norcross. "My advocacy is critical in helping the State see that urgency, but what about other families who are suffering in silence? I worry about these people."
Norcross also questions how a "systems change" approach toward full inclusion and integration can also be person-centered care.
"'Integration' is being pushed as the ideal, but blindly so," said Norcross. "My family home, wired like prison, is considered 'integrated.'"
Norcross hopes her work with the Wyoming Independent Living Center will provide her opportunity to reframe the dialogue.
"We've lost sight of concepts like 'community integration' and 'person-centered supports,'" she says. Families, advocates and elected officials must re-direct collective focus away from 'bricks and mortar' and back on each individual."
My son's needs are unique and personal to him," added Norcross. "What he needs and what I want for him will be different than another individual and another family. Our system must be responsive to individual needs and choice. I am a fighter and I do not give up. I will continue working to change that."
