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."
The Michigan Department of Community Health has released its transition plan for implementation of the federal Home and Community Based settings rule that was issued in January 2014. The announcement begins with a summary of the purposes of the rule. This characterization does not include any of its negative features such as limiting choice for individuals with DD who choose to live or receive services in congregate settings (more than 3 or 4 people with disabilities living or receiving services together), including planned or intentional communities. Neither does it include exceptions to the rule for health and safety reasons.
To decipher the acronyms used in the transition plan document, refer to page 1, row 1, and the last two columns to the right under "Sources" and "Key Stakeholders".
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The Centers for Medicare and Medicaid Services recently made a new set of rules for the delivery of Home and Community Based Services through Medicaid waiver programs. Through these rules, the Centers for Medicare and Medicaid Services aim to improve the experience of individuals in these programs by enhancing access to the community, promoting the delivery of services in more integrated settings, and expanding the use of person-centered planning. The home and community-based setting provisions in this final rule establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting's location, geography, or physical characteristics.
Overview of the Settings Provision
The final rule requires that all home and community-based settings meet certain qualifications. These include:
* The setting is integrated in and supports full access to the greater community;
* Is selected by the individual from among setting options;
* Ensures individual rights of privacy, dignity and respect, and freedom from coercion and restraint;
* Optimizes autonomy and independence in making life choices; and
* Facilitates choice regarding services and who provides them.
The final rule also includes additional requirements for provider-owned or controlled home and community-based residential settings. These requirements include:
* The individual has a lease or other legally enforceable agreement providing similar protections;
* The individual has privacy in their unit including lockable doors, choice of roommates and freedom to furnish or decorate the unit;
* The individual controls his/her own schedule including access to food at any time;
* The individual can have visitors at any time; and
* The setting is physically accessible.
Below please find links to Michigan's HCBS Transition Plan as well as links to source documents about the HCBS rule change from the Centers for Medicaid and Medicare Services.
The MI Home and Community Based Settings rule Transition Plan
The Department released the draft plan for public comment on November 24, 2014 and will be accepting comments until December 24, 2014. You may submit comments regarding the transition plan by e-mail to:
HCBSTransition@michigan.gov
or by mail to:
Attention: HCBS Program Transition
Medicaid Policy
Michigan Department of Community Health
P.O. Box 30479
Lansing, Michigan 48909-7979
All comments on this topic should include a "HCBS Transition Plan Comment" reference somewhere in the written submission or in the subject line if an e-mail is used. Comments and related responses will be available on this website following the end of the comment period. Please list or summarize your comments in a document or email. Please do not submit an electronic version of the draft statewide transition plan using the "track changes" function.
The purpose of this review and comment on the draft statewide transition plan is to develop and implement the best plan and process possible for review and assessment of settings. Discussion regarding evidence that a particular setting is "home and community-based" and/or similar comments will not be considered. Please limit your comments to the content of the draft plan.
-MDCH Website
Centers for Medicare and Medicaid Services
The Centers for Medicare and Medicaid Services have provided fact sheets, webinar slides, informational bulletins, and toolkits HERE .
The Autism Society San Francisco Bay Area blog has a post from a parent who felt the extreme frustration that many others felt when Jerry Seinfeld mentioned in an interview recently that he just might be on the autism spectrum. Here are excerpts from the blog post:
The Day "Autism" Died
by Jill Escher, president of the Autism Society San Francisco Bay Area
11/10/2014
The word "autism" died last week, it ceased to retain any power to create a shared understanding, which is, after all, the very purpose of language.
I'm not bemoaning that Jerry Seinfeld felt himself to have some social anxieties or even that he referred to himself as on the autism spectrum, it's just that I'm plain done with the autism community's failure to have developed a robust enough vocabulary to carve out meaningful distinctions among the wildly diverse assortment of profound pathologies and mere personality accents we have come to think of as "autism"….
….absurdly, competent fully and functional people can be popularly understood as having "autism," even though they in no way resemble people like my own children, who are nonverbal, can't dress themselves, cannot play or have a conversation, will never work, will never have friends, and will require lifetime of 24/7 care…
…It's time for reasonably intelligent people to cry, "Enough!" Words can do harm, but perhaps just as importantly, lack of words can do harm. Now with a half million with more severe forms of autism and probably at least as much with higher functioning forms, we need to radically expand our vocabulary to make the practical distinctions necessary for the shared understanding of the needs of this population and the profound challenges they very often face...
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Read more from the Autism Society San Francisco Bay Area Website and Blog:
New federal rule for HCBS settings: integration or limited choice?
In January 2014, the federal Centers for Medicare and Medicaid Services (CMS) issued a new rule for Home and Community Based Service (HCBS) settings that restricts the use of Medicaid funds to settings that are deemed to be integrated into the community as determined by CMS and in CMS approved state plans for implementation of the new rule. The new rule applies to all Medicaid waivers and the overall State Plan that lays out how the state intends to provide services and residential supports to people with developmental (and other) disabilities.
States have a maximum of 5 years to comply with the new rule and there should be numerous opportunities for public comment on the transition plans for implementation. The transition plan for a modified Habilitation Supports Waiver (HSW) for people with developmental disabilities has been proposed and public comments to the Michigan Department of Community Health were due on September 26, 2014.(Don't let due dates bother you too much; you can always comment to state and federal officials on public policy any time you feel moved to do so, but adhering to deadlines doesn't hurt.)
Another transition plan for the state will be available for public comment soon. You can keep updated on transition plans, modifications to waivers and state plans, and dates for public comment at this Website, HCBS Advocacy, and here, at the Website page specifically for Michigan. Other background information is also available.
Reading some of the materials may make you feel like you have entered Alice's Adventures in Wonderland, and you have my sympathy. The main things to keep in mind are:
- Are the plans and proposals you are being asked to comment on clear and understandable to you so that you know exactly what the state has in mind? If not, that may be your first comment.
- How will the plan or proposal affect your disabled family member (or friend)?
- What if things change in the future for your family member? Will the proposal or plan allow enough flexibility to anticipate future events or changes in need that may affect services and living arrangements for your family member.
In other words, you shouldn't have to be a policy expert to read and interpret changes that could have a significant effect, good or bad, on the person with a disability and your family. Start with what you know and do the best you can. Ask a lot of questions where the policy is unclear or you think the state (or the CMS) has not thought through the long-term consequences of their proposals.
Links to the Final Regulation from CMS on the HCBS settings rule.
Webinar from the Michigan Department of Community Health on the MI Transition plan.
Frequently Asked Questions from ACCSES, a national providers organization.
Coalition for Community Choice ; The contact for CCC is Desiree Kameka at DKameka@MadisonHouseAutism.org
These remarks were made when Thom Tillis was the North Carolina Speaker of the House. He is now the U.S. Senator-elect from North Carolina:
"What we have to do is find a way to divide and conquer the people who
are on assistance," Tillis said. "We have to show respect for that woman
who has cerebral palsy and had no choice, in her condition, that needs
help and that we should help. And we need to get those folks to look
down at these people who choose to get into a condition that makes them
dependent on the government and say at some point, ‘You’re on your own.
We may end up taking care of those babies, but we’re not going to take
care of you.’ And we’ve got to start having that serious discussion."
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Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, did not hold back when she talked to reporter Beth Miller about federal funds paying for services for people with disabilities who choose to live in congregate care (more than 3 or 4 people with disabilities living together):
"...she
does not want government money used to support segregated communities
for people with disabilities. That money should go to those who can live
in ordinary community settings and want to do so.
"'This
would suck up every drop of Medicaid money there is,' she said. 'If
they want to choose congregate living, then let CMS use only nursing
home money. Don't suck it all up because you want to live in summer camp
forever.'"
In response to these comments, Dr. Lanny Edelsohn wrote in an opinion piece about McMullin-Powell's remarks: "...I
am nonetheless most grateful for her finally revealing something that
many in the disability community have long suspected but no one has yet
had the courage or honesty to admit: that at the end of the day,
this battle over the direction of the Medicaid waiver, while
superficially clothed in the appealing rhetoric of 'rights,' is, like
many things, actually about money." [emphasis added]
*****************************
Then there is this from The Press Democrat: "Close to Home: Time to end war over the Sonoma Developmental Center" by Kathleen Miller, 11/8/14. Kathleen is president of the Parent Hospital Association at the Sonoma Developmental Center in Sonoma Valley, CA.
"...Following the [Halloween] parade, I took my son out to lunch. While at one of the local restaurants, I ran into a former SDC employee who now works for a community day program provider. Her clients were eating there also, and we enjoyed a brief minute to chat. I reminded her that it was parade day at Sonoma Developmental Center. She had always been an enthusiastic participant during her years working at the center, and we both agreed what fun it would be if her community clients could join with SDC residents and participate in the parade.
"She shook her head and shared that it was frowned upon for those in her program to in any way participate at SDC events. I didn’t have to ask why. It is an old battle that continues today.
"As long as I have been aware of developmental centers and community services outside of the centers, I have also been aware of the friction between them. Care providers tell their clients horror stories about what life is like inside developmental centers. They bring them to legislative hearings to urge for closure even if these same clients have never set foot inside of a developmental center."
.........
Kathleen Miller would like to create "...a seamless system that serves all of the developmentally disabled populations, including those that regional centers struggle with. We need to find ways to use the Sonoma Developmental Center infrastructure to create something special, a system that can fill the gaps in care that exist in today’s system. We need a system that cannot only help the center’s residents but those in community setting where services are not working."
She is disheartened by the old voices that only want closure, but she is also hearing new voices that give her hope:
"These new voices either know nothing about the old battle lines or want to rise above them. It is my hope that together we will be those who decide the future of Sonoma Developmental Center and of the system of care going into the future."
Many housing projects, including planned communities for people with developmental disabilities, have been built in recent years that use flexible Medicaid funding to provide services to people wherever they choose to live. Federal Medicaid law explicitly prohibits Medicaid waiver money or other Home and Community Based Services (HCBS) funding from paying for housing. Many family organizations, however, have built or found housing that is uniquely designed for people with very specialized needs and have then used HCBS funding to pay for services for the individuals who live in these homes.
A new rule from CMS, the federal agency that regulates Medicare and Medicaid, has set standards for what CMS considers to be suitable settings to promote integration into the community.
Consistent with the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision, states must administer the full array of home and community-based services in the most integrated setting appropriate to the needs of qualified individuals with disabilities. The new rule, however, threatens to limit Medicaid funds in settings that are deemed too institutional in nature by CMS standards and force individuals with disabilities to jump through hoops to justify their choices, if they want to live in settings that come under special scrutiny by the CMS. In addition, many advocacy organizations that ideologically support forced deinstitutionalization and oppose all congregate settings (settings that serve more than 3 or 4 individuals with disabilities together), are pushing to have states limit and eliminate settings that they do not like. This is a problem, especially for people with the most severe and complex disabilities who are also people who often need and benefit most from congregate care or services in congregate settings.
Disability advocates claim that their ideological opposition to congregate care is supported by the 1999 Supreme Court Olmstead decision, but that is a misrepresentation of the decision's mandate. The Supreme Court took a balanced approach, finding that unjustified isolation of individuals with disabilities is discrimination under the Americans with Disabilities Act, but they explicitly stated that they did not condone "termination of institutional settings for persons unable to handle or benefit from community settings." They also recognized "… the States' need to maintain a range of facilities for the care and treatment of persons with mental disabilities, and the States' obligation to administer services with an even hand." The Supreme Court held that states may move people from institutional care to community only as long as the individual does not oppose the move. And, “…the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person — recognizing on a case-by-case basis, that setting may be an institution".
The Delaware Homes for Life Foundation sponsored a conference on October 31, 2014, called "Innovations in Residential Neighborhoods". Homes for Life was founded by Dr. Lanny Edelsohn and his wife Micki, the parents of an autistic adult son. The foundation has raised millions of dollars to build and furnish 27 homes for people with autism and other developmental disabilities.
The conference was covered in an article on Delaware Online on 11/1/14 entitled "Those with disabilities: Where should they live?" by Beth Miller. One of the speakers at the conference was from The Arc Village in Jacksonville, Florida, where ground will be broken soon on an $18.6 million, 97-unit community of affordable duplexes and triplexes to be rented by those with intellectual and developmental disabilities. Some of the discussion was about whether the new CMS rule on HCBS settings would allow residents who choose to live in planned communities access to Medicaid HCBS funding to pay for services where they live.
While the purpose of the conference was to showcase innovative housing ideas from around the nation, it was covered as a civil rights battle "simmering not far below the surface of local and national discussions on how and where people with intellectual and developmental disabilities... might live and work in the future."
Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, did not hold back when talking to the reporter about where she stood on the issue:
"…to Daniese McMullin-Powell, a longtime disability rights activist who has handcuffed herself to the White House fence to make her case against life in institutions, the day's discussions made her feel like she had been to a 'segregationist meeting.'
"McMullin-Powell uses a power chair because of post-polio syndrome. She has children and grandchildren with a variety of disabilities – including autism and Down syndrome, she said.
"She wants all of them to have access to full lives in their communities. But she does not want government money used to support segregated communities for people with disabilities. That money should go to those who can live in ordinary community settings and want to do so.
"'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don't suck it all up because you want to live in summer camp forever.'"
Dr. Lanny Edelsohn answered the "startling" remarks by Deniese McMullin-Powell in an opinion piece, "Delaware must be open to new ideas on housing" on 11/4/14 on Delaware Online:
"Beth Miller’s recent article… shines a most welcome light on an urgent issue in Delaware: the affordable housing crisis for adults with intellectual and developmental disabilities. In the state of Delaware, there are 2,900 persons living at home with parents who are 60 or older. These parents all ask the same question: 'What will happen to our loved ones when we are gone?'"
He goes on:
"In the article, I was startled to read the virulent comments by Daniese McMullin-Powell, Chair of the State Council for Persons with Disabilities, who had remained silent during the conference. While I disagree with each of her assertions as baseless, including her comments that she thought she was attending a segregationist meeting of rich white people (the conference was free, the attendees were clearly diverse and a tax return was not a requirement for admission), I am nonetheless most grateful for her finally revealing something that many in the disability community have long suspected but no one has yet had the courage or honesty to admit: that at the end of the day, this battle over the direction of the Medicaid waiver, while superficially clothed in the appealing rhetoric of 'rights,' is, like many things, actually about money. [emphasis added]
“'This would suck up every drop of Medicaid money there is,' she said. 'If they want to choose congregate living, then let CMS use only nursing home money. Don’t suck it all up because you want to live in summer camp forever.'
"By day, I am a neurologist who treats persons with autism, Down syndrome and other central nervous system disorders where there can be self-abusive behavior, PICA (eating foreign objects) or progressive early onset Alzheimer’s disease. Every week I treat patients who are in great need of safe and supervised environments. And I see families, struggling bravely and under great adversity, to care for them, often as their own health and welfare decline. I can assure you, from the patients I treat, that life is not a “summer camp”; rather, it more often resembles an exhausting challenge of relentless obstacles."
Thank you, Dr. Edelsohn. I couldn't have said it better myself.
This is an animation from the Madison House Autism Foundation
Where will 4.903 million individuals live?
Here are the facts:
There are 3.775 million people with Intellectual and Developmental Disabilities (I/DD), 77%, who do not receive publicly funded residential supports.
1.127 million people with I/DD, or 23% do receive publicly funded supports. Of those, 56% live with family and 44% do not live with family.
Of the 44% who do not live with family, 127,000k or 27% live in their own home. The other 73% live in group homes (290k), foster homes (44k), nursing facilities (34k), and less than 1k live in psychiatric facilities.
From 2001 to 2011, 275k additional people got residential supports: 180k stayed with family and 95k moved out.
77k are on the waiting list for services needed in the next year. 853k are living with caregivers aged 60 or over.
Remember: 3.775 MILLION OR 77% GET NO PUBLICLY-FUNDED SERVICES AT ALL!
The Detroit Free Press reports that the family of an autistic girl won a $3M award in a Federal lawsuit for wrongful prosecution against the Oakland County, Michigan, prosecutors office. The article, "Jury awards $3M to Wendrows in wrongful prosecution case" by Lori Brasier and John Wisely, summarizes the case that has drawn national attention because it involved the use of a widely discredited communication technique called "facilitated communication" as evidence of criminal wrongdoing by the parents of a severely disabled autistic girl.
Julian and Thal Wendrow of West Bloomfield, Michigan, were arrested in late 2007 after their 14-year-old daughter supposedly typed on a keyboard that her father raped her while her mother looked the other way. The daughter communicated through a facilitator, an aide at her school, who guided her hand over the keyboard, but she was otherwise unable to speak. The girl was later found in court to be unable to answer questions when the facilitator was our of earshot. This is consistent with court findings in other cases involving FC: "The typing, a controversial method known as 'facilitated communication,' had been widely debunked in the last two decades. Research always found it was the aide guiding the disabled person's hand, either consciously or unconsciously."
This did not stop the prosecutors, however: "Nevertheless, then Oakland County prosecutor David Gorcyca, his chief assistant, Deborah Carley, and assistant prosecutor Andrea Dean pressed on with the prosecution, even as news reports showed the method was unreliable."
In my opinion, the most egregious wrongdoing in the case involved the autistic girl's brother, who is also autistic but is much higher functioning than his sister: "Ian, who received the largest part of the jury award, was interrogated for two hours by West Bloomfield police who told him they had videotape of his father assaulting his sister. Police never had such a tape and the claim was a lie that a psychologist would later testify left the boy traumatized. Jurors did watch a video showing Ian's interrogation, in which the boy, then 13, doubled over in tears."
There was no physical evidence to support the rape charges. And, "the typed statements said the girl was coming forward because she feared going to hell for lying. But lawyers pointed out the Wendrows are Jewish and don't believe in the Christian concept of hell."
Defendants in the lawsuit were all from the Oakland County prosecutor's office:
Former Prosecutor David Gorcyca who left office in 2008 was found to have "…defamed the family when he insisted months after he left office, and a year after the case was dropped, that the Wendrows were in fact guilty of abusing their daughter." He now works as a defense attorney.
Gorcyca's assistant Deborah Carley was found by the jury to have violated the constitutional rights of the autistic girl's brother. "Carley now heads the Children and Youth Services Division for the Michigan Attorney General's office," according to the article.
Assistant prosecutor Andrea Dean was also a defendant in the case.
Deborah Gordon, a Bloomfield Hills attorney, represented the family throughout the suit.
************************
More coverage of the trial by the Detroit Free Press:
"Wendrow lawsuit against ex-prosecutors to begin", 10/7/14
"Lawsuit against ex-Oakland prosecutors gets under way", 10/8/14
"Attorney: Prosecutors ignored truth in charging couple", 10/9/14
"Ex-prosecutor: Autistic girl was communicating in rape case", 10/14/14
"Former Oakland prosecutor defends actions in Wendrow case", 10/31/14
These FAQs on the Home and Community Based Services (HCBS) settings rule are from ACCSES, a national organization representing disability service providers. They are helpful in understanding the HCBS rule:
September 2014
Frequently Asked Questions Regarding the Home and Community-Based Services (HCBS) Setting Requirement and the Full Array of HCBS Services
1. Does the rule regarding home and community-based services settings continue to permit the full array of home and community-based services, as defined in the Medicaid HCBS statute and regulations and included in the individual’s person-centered plan?
Yes. As we indicated in the section-by-section analysis accompanying the final rule “the final rule will continue to convey this flexibility for states.” [79 FR 2954 (January 16, 2014)] Consistent with the Americans with Disabilities Act and the Olmstead decision, the state must administer the full array of home and community-based services in the most integrated setting appropriate to the needs of qualified individuals with disabilities. In addition, the state, in providing these services, directly or through contract or other arrangement, may not provide different or separate services unless such action is necessary to provide qualified individuals with disabilities with services that are as effective as those provided to others. [28 CFR 35.130(b)(1)(iv) and 35.130(d)]
2. Does the full array of home and community-based services defined in the Medicaid HCBS statute and regulations include prevocational services?
Yes. Prevocational services are defined in the regulations [42 CFR 440.180] to mean habilitation services that prepare an individual for paid or unpaid employment and that are not job-task oriented but are instead aimed at a generalized result, for example, teaching an individual such concepts as compliance, attendance, task completion, problem solving and safety.
As specified in the regulations, prevocational services are distinguishable from noncovered vocational services by the following criteria [42 CFR 440.180]:
- The services are provided to persons who are not expected to be able to join the general workforce;
- If the beneficiaries are compensated, they are compensated at less than 50 percent of the minimum wage;
- The services include activities which are not primarily directed at teaching specific job skills but at underlying habilitation goals (for example attention span, motor skills); and
- The services are reflected in a plan of care directed to habilitation rather than explicit employment objectives.
Prevocational services, as a form of habilitation services, are designed to assist individuals acquire, retain, and improve self-help, socialization and adaptive skills. [42 U.S.C. 1396n(c)(5)]
Prevocational services are time limited and the time limitations are determined based on the individual’s needs, including the need to retain skills, as identified in his or her person-centered plan. [September 16, 2011 Information Bulletin at page 7]
3. May prevocational services be provided in a variety of locations in the community, including fixed site facilities?
Yes. Consistent with an individual’s person-centered plan, prevocational services may be furnished in a variety of locations in the community, including fixed site facilities but prevocational services are not limited to fixed site facilities. [September 16, 2011 Information Bulletin at page 8]
4. Must prevocational services provided in fixed-site facilities satisfy the home and community-based setting requirement?
Yes. The final HCBS setting rule establishes affirmative outcome-based criteria rather than criteria based solely on a setting’s location, geography, or physical characteristics. [79 FR 3011 (January 16, 2014)] Thus, prevocational services and other home and community-based services that are provided in fixed-site facilities must meet the HCBS setting requirements set forth in the rule [79 FR 3013 January 16, 2014)], including the requirement that the setting is integrated in and supports full access of individuals receiving Medicaid HCBS to the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, to the same degree of access as individuals not receiving Medicaid HCBS [42 CFR 440.301(c)(4)(i)-(vi)].
5. What practices illustrate the qualities of a home and community-based setting in a fixed-site facility providing prevocational services?
Example of appropriate practices regarding the provision of prevocational services in fixed site facilities that illustrate the qualities of a home and community-based setting include:
- The program is in a facility that resembles any other business of its size and scope; Individuals are working on production of goods and services for the greater business community, similar to other businesses;
- The program may serve populations other than HCBS participants with disabilities, including
Veterans, individuals who are poor and under-privileged and need assistance;
- Participants are provided an overview of employment options, including discussions about and referrals to state vocational rehabilitation and other programs for competitive integrated
employment;
- Community competitive integrated employment is discussed, encouraged, and promoted at every review, and the person is directly involved in making an informed choices, as well as during the delivery of prevocational services; and
- Prevocational services include opportunities to gain greater exposure to the greater community and to teach individuals how to access the greater community, including trial work experiences, and internships, and tours of local businesses.
6. If a program provided in a fixed-site facility satisfies the home and community-based services setting outcome-based criteria set out in 42 CFR 440.301(c)(4)(i)-(vi), does the program qualify for HCBS funding?
Yes. The program conforms to the HCBS setting characteristics and thus may receive HCBS funding.
Parents have their say on closing sheltered workshops for their adult children:
The Michigan Department of Community Health & The Michigan Association of CMH Boards Present:
ANNUAL HOME AND COMMUNITY BASED WAIVER CONFERENCE on November 18 & 19, 2014 at the Kellogg Hotel & Conference Center - 55 South Harrison Road, East Lansing 48823.
We have three easy ways to register: 1. Online here; 2. Fax (517) 374-1053 or 3. Mail at MACMHB 426 S. Walnut, Lansing, MI 48933
Topics Covered: Michigan Medicaid Waivers including the Children’s Waiver Program (CWP) and the Habilitation Supports Waiver (HSW). Also, training in ASD (Autism Spectrum Disorder) and implementation of the Medicaid/MIChild Autism Benefit.
The regular fee for this Conference is $140 but it is only $20 for individuals receiving waiver services and their family members.
Continuing Education Credits available for Licensed Social Workers.
Overnight Accommodations/Directions: The Kellogg Hotel & Conference Center is located in East Lansing adjacent to Michigan State University. Our special guestroom rate is $75+ fees and taxes per night based on availability. For specific directions or to reserve a room, please call 517/432-4000 and mention that you are attending the C-Waiver Conference.
Conference Brochure & Registration Materials: Conference details and registration will be available on our website, or if you have any questions, please call (517) 374-6848.
MACMHB Contact info:
Anne Wilson, Training & Meeting Planner
Michigan Association of Community Mental Health Boards
426 S. Walnut Street, Lansing, MI 48933
(517) 374-6848 phone
(517) 374-1053 fax
www.macmhb.org
Is there such a thing as a multi-Billion dollar NONprofit? Yes, there is, and one of them is The ARC, the country's largest advocacy organization for people with developmental disabilities.
An article in Fusion, a newsletter from the national ARC for September 29, 2014, covers a recent report from the National Center on Charitable Statistics of the Urban Institute. Based on a year's worth of data compiled from IRS 990 forms (the forms that most nonprofit organizations file annually with the IRS), The ARC and its chapters throughout the United States have brought in $4.02 Billion in Gross Receipts, "…including $3.83 Billion in Total Revenue, $2.76 Billion in Program Service Revenue, $989 Million in Contributions & Grants (includes Government Grants) and $20 Million in Investment Income."
"Of the Total Contributions, Gifts and Grants, $145 Million is from individuals, foundations and corporations while $847 Million is from government…"
That's a lot of money! Of The ARC's total revenues of $3.83 Billion, $847 Million or 22% came from government, and $145 Million or 3.8% from individual donations.
One can learn a lot about an organization from its IRS 990 forms, including its revenues, expenditures, and how much it pays its highest paid employees. Guidestar is a good place to start looking for information on nonprofit organizations. Registration is free. Here is Guidestar's Frequently Asked Questions about form 990.
Read the full article on The ARC's finances here.
