Friday, October 21, 2016

October is Disability Employment Awareness Month

This video is from Justin Caine of Lansing, Michigan. He is a man with a disability who co-founded Good Fruit Video, a video production company which specializes in telling stories of organizations, programs and events to potential customers, clients, sponsors and participants. He was also the Vice-Chair of the Michigan Developmental Disabilities Council.

For more information on Justin's business and numerous other activites, see his Linkedin page

Saturday, October 15, 2016

VOR and YOU : Fighting for a full range of services and against "one-size-fits-all"

VOR is a national organization advocating for a full range of services and residential options to meet the needs of people with Intellectual and Developmental Disabilities (I/DD). This is from the VOR Weekly News Update from October 14, 2016, providing information on some of the issues that VOR has been following in recent months. The VOR Weekly News Update is one of the benefits of membership in VOR.

VOR and YOU -  Background on Connecticut and Ohio, Sheltered Workshops

Over the past weeks, VOR has printed several stories on changes to the DD Services system in Connecticut, on our concerns regarding a lawsuit in Ohio, and on protecting sheltered workshops. Many of you understand these stories, and why we take the positions we do, but for those who need it, I'd like to provide a little background. 

In Connecticut, the Department of Developmental Services (DDS) covers all services in the state, both private and state-run. There are few ICF-level beds [Intermediate Care Facilities for Individuals with Intellectual disabilities] in the private facilities. Most are in congregate care facilities operated by the state, including Southbury Training School, and five regional centers. Two of these regional centers are slated to be shut down by January, 2017. 

Admissions to the state's ICF's have been closed since the mid-1990's, and the forces of "one-size-fits-all" have been working hard to move everyone to the community.

But it doesn't stop there. The governor has recently declared a budget emergency, and decided that one large chunk of cutbacks will come by cutting services to CT's most vulnerable. Over the past ten years, one way the DDS has managed to persuade people to exit ICF's has been to transfer staff and peers from a state-run ICF to a state-run group home, keeping people together along with their unionized caregivers, many of whom have been with them for more than a decade. Now the state wants to privatize the homes, remove the caregivers and replace them with workers who are paid less, who many claim are not as well trained and more likely to leave within a year or two. Needless to say, families feel the state has betrayed them. VOR supports the families who want to maintain a full range of residential options, and we ask the Governor to look elsewhere to balance the state's budget.

In Ohio, it's not a matter of public vs. private facilities. The majority of ICF's in the state are private, and Ohio has a strong system of ICF level care. Unfortunately, it has not met the needs of those on the waiting lists who would prefer to live in HCBS waiver group homes. Now, the forces of "one-sizism" are working to grow the group home system at the expense of the people living in ICF's, rather than trying to provide appropriate levels of service to all people with I/DD as needed. They have filed a lawsuit that is remarkably similar to the Ligas case from a few years back that took place in Illinois. Many VOR supporters remember that one. It lasted for years, and required a lot of time, money, and resources from people who wanted to keep ICF-level services viable in Illinois. The suit was finally settled a few years ago, with a victory for our side. 

This new lawsuit, Ball v. Kasich, looks as though the same people have moved a few hundred miles to try to do the same thing to the good people of Ohio, only this time they hope not to make the same mistakes they made in Illinois. VOR supports the families of Ohio who wish to protect the vital services that protect and provide for their loved ones. [See the website for the Ohio Disability Advocacy Alliance]

This brings us to sheltered workshops. Most VOR members do not have loved ones who participate in sheltered workshops. Why should we care? This isn't our issue.

Well, VOR doesn't fight on an issue by issue basis. We fight for principles. The principle that defines maintaining sheltered workshops is similar to the principle of fighting for a full range of residential services. One size does not fit all. We support a full range of employment options, providing meaningful activity and services and measured compensation for all levels. We support competitive employment, employment training and recruitment services, and sheltered workshops and farms and hope that these outlets are available to each and every person according to their level of ability and comfort. 

I hope this explains a little more about us, about who we are and why we do what we do. I hope this helps you to see the connections between the stories we present in our Weekly Updates.

Wednesday, October 12, 2016

DD News updates for families and people with DD

Here are a few articles that are worth reading: 

The Autism Society of the San Francisco Bay Area Blog is always worth reading, especially when it comes to implementation of the federal Home and Community-Based Settings (HCBS) rule:

9/21/2016 by Jill Escher

Jill Escher is an autism philanthropist, real estate investor, former lawyer, and mother of two children with nonverbal autism. She is also the President of the Board of Directors of the Autism Society of the San Francisco Bay Area. 

The Centers for Medicare and Medicaid Services (CMS) is the federal agency that regulates Medicare and Medicaid. CMS issued the controversial Home and Community-Based Settings (HCBS) rule in 2014 that limits HCBS funding for people with disabilities to only those whose residences and services are considered by CMS as sufficiently integrated in the broader community. Here are some excerpts from the SF Autism Blog on the effects of the HCBS rule on people with autism and Intellectual and Developmental Disabilities living in private settings:


“Residences controlled by Medicaid service providers like group homes have always needed to pass various CMS tests. But now the agency is undertaking a vast expanse of regulatory reach into private residences owned or leased by the disabled persons, such as homes, apartments, condos, townhomes, mobile homes, houseboats, yurts, farms, ranches, tiny homes… every private place an autistic/DD adult might reside of their own volition. Based on ostensible new CMS rules, after property-based investigations, private homes deemed to be 'noncompliant' will be ineligible for residents to receive HCBS.

"In a nutshell, noncompliance means CMS or the state Medicaid authority has found a private residence has 'the effect of isolating' beneficiaries from the greater community and therefore is legally considered to have 'the qualities of an institution.' ... If the residence does not become “compliant” following an order from CMS or the state, current and future residents are ineligible for HCBS benefits. It's functionally equivalent to a licensing scheme for private residences.

“…if CMS had been upfront and said, “Here’s our new autism/DD private residence licensing requirement,” the ensuing uproar would have crushed the proposal, as CMS lacks authority to regulate private residences. But when you create policy by stealth, smoke and mirrors, closed-door-crafted guidances, and a heap of vague lingo and euphemism, maybe no one will really notice."

read more here….

This blog post is Part 2 of “The Federal Government’s Quiet War against Adults with Autism” 

Here is Part 1 of “The Federal Government’s Quiet War against Adults with Autism


Also from the San Francisco Bay Area Autism Society Blog is a post by Lisa Graziano, the parent of a son with Prader Willi Syndrome or PWS. She fears that that the federal HCBS rule will restrict disability-specific housing that her son and others like him desperately need:


by Lisa Graziano

“…Our loved ones with PWS have an insatiable drive to eat no matter how much food they consume and require significant residential and vocational supports. If food is not strictly controlled and locked away, people with PWS will die from stomach rupture or from other food-related complications. Adults with PWS must live, work, and play in settings that are specifically designed to meet their unique health and welfare needs – namely that the refrigerator and food cupboards are locked at all times, trash cans are emptied and secured, there is no access to money or credit cards that could be used to purchase food items, there is continuous supervision to ensure they don’t ask or beg neighbors or otherwise engage their community for food, and they receive support to manage the often violent behavior outbursts common for the syndrome. Without appropriate restrictions, people with PWS will literally eat themselves to death and/or engage in trespasses in relentless attempts to find food.

“Any attempt to integrate people with disabilities in a one-size-fits-all cookie cutter approach, like the federal Medicaid agency CMS appears to be attempting, actually reduces choice and further isolates people with developmental disabilities.”


From the VOR Weekly Update for October 7, 2016 : 

The COFAR Blog - Guardianship Under Fire by the Same Groups that Oppose Congregate Care

By Dave Kassel, September 30, 2016

Guardianship of persons with developmental disabilities is under fire in Massachusetts and elsewhere, and families could see their advocacy rights eroded as a result. One prominent threat to guardianship appears to be embodied in a process called Supported Decision Making (SDM).

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas. The network supporters can include family members, friends, and corporate service providers, according to the Center for Public Representation, which is pushing for SDM in Massachusetts. 

There are some promising aspects to SDM, but a number of concerning aspects as well. To the extent that it can or does replace irresponsible or uncaring guardians with supportive teams, SDM would appear to have a potential to improve the lives of many people.

On the concerning side, SDM does not appear to be well designed for people with severe levels of disability.  Those people are most in need the protections of guardianship; yet, many SDM advocates paint guardianship with a broad, negative brush and don’t appear to acknowledge the value that family members, in particular, bring as guardians to the lives of their loved ones.

This issue of the VOR Weekly Update includes several articles about the failure of states to live up to their responsibilities to serve people with DD in New York, West Virginia, Connecticut, and Illinois. 

Learn more about VOR:

"VOR is the one organization that strives to keep the big picture in focus. Our goal is to help individuals with Intellectual and Developmental Disabilities (I/DD), their families, their guardians, and their caregivers. We try to see the big picture, that we are all in this together, and that we should be fighting together to improve services for everyone. We should make sure that more funds go to care for and provide support for individuals, and that they don't get diverted to agencies and organizations that profit from promoting ideologies that only serve part of the I/DD community. 

"VOR realizes that individuals need individualized services, and we support the full range of residential and employment options. We support guardianship and recognize it as both a right and a responsibility. We support integrated living for those who seek it, and we support congregate living for those who may not. We know that a home is defined by love and care and safety, not by the size or floor plan of the building. We know a community is not defined by how many non-disabled people are present, but by the sense of belonging one feels with those around them. We know that for some, competitive employment provides a sense of accomplishment, while for others, there are benefits far more important than the size of a paycheck that can be derived from performing meaningful work among one's peers..."

Check out the VOR Website

Monday, October 3, 2016

Surviving the Inclusion Delusion: Danny at 40

I have made some changes and corrections to this blog post since it was posted on October 3rd, 2016. This version may look slightly different from the original, but the substance of the post has not changed.---JRB

My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant.  We do not love him less because he lives and survives with profound developmental disabilities. 

I’ll spare you the details of his birth and the aftermath. It’s enough to say that while the other mothers whose babies were being discharged from the hospital were learning how to give their babies a bath, I was receiving instructions on how to administer Cardiopulmonary Resuscitation to an infant.  

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, and a supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.  

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers.  Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day. See "Choosing Sides On School Inclusion" from the Huffington Post, 8/22/16.

The Inclusion Delusion began with a false and unprovable assertion based on wishful thinking and a willful misinterpretation of federal law. In 1990, there were many disabled children who were unjustly and illegally prevented from participating in classrooms with their non-disabled peers and there still are.  Many of their parents understandably leapt at the idea that by proclaiming a belief in Inclusion, their children’s needs might finally be recognized and fulfilled. 

But the uncritical acceptance of the Inclusion Delusion disregarded a number of moral and ethical questions:  Is it right to make judgments about “all children with disabilities” without considering their individuality and acknowledging the full range of their diverse needs?  Do advocacy organizations or government agencies have a right to impose on children and their parents an all-encompassing doctrine when the parents and others who know the child best have good reason to disagree? Is Inclusion the ultimate goal of educating children with disabilities or are the needs of the individual child paramount in determining educational services and placement? Is Inclusion a cause that must be served, whether or not it is appropriate for a specific child? 

In the early 1990’s, the indoctrination for inclusion in schools was intense, an obvious sign that the project was well-funded and a great opportunity for organizations and local agencies to tap into a new funding stream. I attended a meeting sponsored by our local ARC (formerly the Association for Retarded Citizens) featuring a speaker from another state. She gave a rousing speech citing success stories of even the most profoundly disabled children blossoming in the presence of their non-disabled peers. Non-disabled children, she said, were learning acceptance, tolerance, and the value of people with disabilities to society and their fellow citizens. 

As I listened, I pondered how Danny would be accommodated in a regular middle school classroom? How would they deal with his bouts of vomiting after meals, the necessity for frequent diaper changes, and his need for floor space for his favorite activity - rolling over? Would other students and staff tolerate his occasional blood-curdling screams when things weren't going well for him? Was it wise to remove him from an environment that had every accommodation that he needed and place him where virtually nothing was geared toward his needs? Could anything prevent him from becoming the chief source of disruption for almost every activity that normally occurs in a typical classroom?

I started to pay more attention to the speaker when she offered up some good advice: 

“Give people with disabilities what they need and want! If you want to know what they need and want, ASK THEM! “

Now, that made sense to me and I became more optimistic that I would get something out of the evening beyond a welcome break from caregiving. My optimism was soon crushed, however. The speaker followed her initial advice with a list, her list, of all the things people with disabilities are supposed to need and want. She did not ask if the audience agreed with her.  “They all want to be treated like everybody else,” she said, apparently oblivious to the fact that Danny would die if he were “treated like everybody else”. She went on: “…they want to live independently and make their own decisions; they want to go to regular schools and work at regular jobs; they want to be included in their communities in every aspect of life,”  and so on. Some of the items on her list made sense to me, but most did not considering the complexity of Danny’s severe disabilities.

On another occasion, I saw a film of children's responses to having disabled students in their classrooms. One boy said he had learned that, "Disabled people can do everything that everyone else can do. They just have to try harder." I can understand a child coming to such a simplistic view of disability, but for the adults to include it in a film promoting Inclusion raises questions about their judgment. Poor Danny, I thought. With that kind of "learning", what would ignorance look like?

Danny continued at High Point school for another 13 years. As the Inclusion movement took hold, many children were moved out to local schools, some with the approval and support of their parents and some without. There were threats that the school would close and it almost did. Finally, a charter school and other programs sponsored by the County school district moved in to the empty classrooms and eventually filled the space left by special ed students who had moved out. The integration of High Point and the charter school proceeded at a relaxed pace and was not forced where it was not appropriate for the students involved. At the same time the integrity and the usefulness of the High Point program continued to function to the benefit of the most severely disabled children in Washtenaw County. 

Was this an example of the success of Inclusive education? I don’t believe so and it certainly did not meet the criteria set by advocacy organizations that demanded that disabled children be seen to hobnob with their non-disabled peers to prove to the world they were just like everybody else. The purpose of High Point was never to isolate and segregate its students from the broader community, but to give them an environment and specialized care that was not likely to be achieved anywhere else. 

The Inclusion Movement in education was an ideological undertaking, more enshrined in the imagination of zealots than in the laws and policies governing the education of actual children with disabilities. The 1975 Education for All Handicapped Children Act was in full swing by the late 1970’s and early 1980's, with the majority of children in special education, those with learning disabilities and speech and language problems, attending their neighborhood schools and spending most of their time with children who were not disabled. It was true that schools still ignored the needs of children who caused them inconvenience or were difficult to accommodate or educate, but parents were getting the idea that with a lot of hard work and belief in themselves and what they knew about their children, it was possible to make headway with the new protections and rights afforded their children. 

The Inclusion Delusion, that all children could be accommodated in regular classrooms, signaled a dramatic shift in thinking. Rather than determining the education that each child received based on his or her unique needs, it made the assumption that every child could succeed in placement in regular classrooms. If that did not work, the parents, the schools, and the professionals must have done something wrong. Or, as one parent said in another short documentary promoting Inclusion, “Even if it doesn’t work, you should do it anyway. It’s the right thing to do”.

For years, the proponents of Inclusion in schools have pitted parents against parents, demonized teachers and staff who work with children in specialized classrooms and special schools and set the stage for years to come for disability movements based on over broad generalizations about people with disabilities. 

In the mad dash to close institutions and many other specialized programs for people with disabilities, the people directly affected by these closures were rarely asked their opinion early enough in the process to make a difference.  Instead, advocacy groups, especially those that receive federal funding to promote their causes, claimed to represent people with disabilities and swooped in with all the answers: No one would choose to live in an institution or group home, work at a sheltered workshop, attend a day program with other people with disabilities, or live anywhere but in their own home or at home with their family. All people with disabilities can and should live independently, make all their own decisions, and work in integrated, competitive work settings. 

The truth is that there are people with disabilities who can do only some of these things, some who can do none of them, and some who choose to do things differently than other people with similar disabilities. They have been marginalized. The closure of programs and services that meet their needs has been justified with the promise that closing programs that no one wants, according to the advocates, will pay for more services to more people, “in the community”. This is unlikely to ever be realized as states see “savings” as opportunities to fund more popular government- supported programs (such as fixing potholes), to reduce taxes, and to continue to ignore many of the needs of people with disabilities. Attempts to develop innovative family-initiated projects to serve and house people with disabilities that may actually save money in the long run are also being thwarted by advocates who fear any incursions into the territory they have claimed for themselves as the representatives of all people with disabilities.

Thanks to Danny (and Ian who came along eight years later), my blog has been an attempt to set the record straight, give a voice to people who are rarely heard, and attempt to restore some balance in the stories that are told about people with disabilities. This is an unbelievably  frustrating time for families who see their judgement questioned at every turn as they attempt to salvage necessary services for their loved ones and hope for a truly inclusive future that acknowledges differences in abilities and needs and honors the choices that families and their loved-ones must make. 


For information on Michigan special education and other kids issues, check out Bridges4Kids.

Friday, September 30, 2016

Funding and the availability of support services for I/DD are not keeping up with the demand

4,902,835 with Intellectual and Developmental Disabilities (I/DD) in USA
1,389,611 supported in an out-of-home residential setting
852,923 individuals living with a caregiver 60 years or older
244,195 residential placements funded from 1994 - 2011

Excerpts from the Madison House Autism Foundation (MHAF), "5 Things You Need to Know about Disability Housing and Advocacy" by Desiree Kameka:

Funding for support services for adults with autism and other I/DD is not keeping up with the demand

States are hoping that families will continue to support their loved ones with disabilities until they no longer can, but delaying assistance until a crisis or death occurs should not be the only option. Parents are often forced to leave the workforce, and adults with I/DD are not given opportunities to grow by leaving the nest. In the best situations, adults with I/DD are content at home but become increasingly dependent on an aging family caregiver; in the worst situations, they are stuck in an abusive and isolated home as states assume that living with one’s family is the best option for everyone. States may even offer financial support to keep an adult with I/DD in his family home. It is essential that people have access to public funding for the supports and services they require to live in a setting outside of the family home. The graphic [above] shows the enormous need for housing alongside the actual growth of residential support.

Check out your State Profile from the State of the States in Developmental Disabilities, a study that has tracked data for more than 35 years. To find residential trends in your state click here.


Government officials do not hear from everyday families nor recipients of publicly funded supports services with I/DD, and this impacts future housing and support choices

Who is talking to CMS or other policymakers as they develop regulations? The most prominent voices today are paid, professional advocates in the DC-metro area. These paid advocates schedule meetings, create statements, attend government events and hearings, and sit on various task forces made up of others in the same circles. While their policy recommendations may make sense from an ideological standpoint, these ideas are often unrealistic in implementation and lacks generalizability when considering the diverse needs and preferences of individuals who utilize waivers. For example, CMS regulations on HCBS waivers requires waiver recipients to come and go from their house at any time. This is an important right for many people, but implementation of this regulation without additional funding for the wide array of waiver recipients makes the regulation simply words on paper.

Let me illustrate: For an autistic adult who can not identify the difference between his front yard and the street, leaving the house without support staff is unsafe and may put that person at risk of being hit by a car. Reimbursement of support staff may allow for only one staff person to support three individuals living in the house. Following CMS regulations, if the staff member is required to accompany one of the housemates on a walk, the two remaining housemates would be left unsupervised at home. If these housemates lived in a pedestrian-oriented gated-community, they could all walk freely in their neighborhood as cars are intentionally restricted. Unfortunately, a neighborhood of this design would be considered isolating by CMS’s standard.

See also the Coalition for Community Choice

Read the full article here

Michigan : DHHS wants to hear from you about the services you need and want

This is a flyer from the Michigan Department of Health and Human Services:


The Michigan Department of Health and Human Services (MDHHS) is asking people with mental illness, emotional disorder, developmental or intellectual disability, or substance use disorder, and their family members, what supports and services they need/want!

This is a follow-up to the Lieutenant Governor’s workgroup on the 298 boilerplate that was in the Governor’s budget recommending privatizing behavioral health services. The boilerplate was changed, but MDHHS needs to write a report to Legislators about suggestions for improving the service system.

To collect information a survey was developed. MDHHS is hosting group meetings to ask people the survey questions. Meetings are scheduled for:

October 4, 2016
From 1-4 pm

October 5, 2016
From 6-9 pm


The Hannah Center
819 Abbot Road
East Lansing, Michigan 48823
(517) 333-2580


For those wanting to comment on a proposal but unable to attend the meeting can access a questionnaire… and then send (email or USPO) the completed questionnaire to:

To obtain the Word version of the survey go to the Affinity Group webpage and scroll down to "Questions for eligible populations and families". You can then fill in the survey answers using the Word document and return it by email or regular mail.


Background information: 

The 298 Initiative

[Section 298 was the notorious proposal inserted into the Governor's 2016 budget bill in March 2016. It had language in it that would have handed over Medicaid funding for behavioral health, including Community Mental Health funding for DD, to Medicaid Health Plans. This change to privatize the funding of services was placed in the budget bill without hearings or input from people affected by the proposal. It was withdrawn and the 298 Initiative was created to make recommendations to the Michigan legislature regarding funding and services for people with DD and other disabilities.]

"The Section 298 Initiative is a statewide effort to improve the coordination of physical health services and behavioral health services in Michigan. This initiative is based upon Section 298 in the Public Act 268 of 2016. Under Section 298, the Michigan Legislature directs the Michigan Department of Health and Human Services to develop a set of recommendations “regarding the most effective financing model and policies for behavioral health services in order to improve the coordination of behavioral and physical health services for individuals with mental illnesses, intellectual and developmental disabilities, and substance use disorders...”
Follow the links on the 298 Website for more information.

Wednesday, September 28, 2016

Montana non-profit service providers echo funding problems found in other states.

In an opinion piece from 9/26/16, from a Montana news site, Jesse Dunn and five other co-signers from non-profit organizations, make a case for the difficulties of providing quality services to people with developmental disabilities when funding has not kept pace with requirements for maintaining and improving care:

“The Montana Department of Public Health and Human Services administers a variety of programs funded by state and federal appropriations to pay for the services provided by the nonprofit direct care providers. Sadly, the funding levels for disability services have lagged over the past decade and failed to meet the rising costs of providing essential services to this special population. Consequently, hiring and retaining qualified, experienced direct care providers has become a near crisis situation. Vacancies, high turnover rates and inadequately experienced care givers plague human service nonprofits, obstructing the mission to enhance our clients’ quality of life. Nonprofits need an adequate number of qualified staff to responsibly care for eligible individuals. Further, the laws regulating support services for people with disabilities mandate staff-to-client ratios to ensure safe and effective client care.

"However, those staffing challenges are getting worse as inflation, mandated government regulations and rising standards of care all keep driving up the cost of providing services. Those of us who belong to the Montana Association of Community Disability Services wish to highlight this issue on behalf of those with developmental and intellectual disabilities whom we serve. For us, it is unconscionable to watch our nonprofit agencies slip further behind and sacrifice quality care for those who are severely disabled. We believe we must educate the public and lawmakers to the plight of these nonprofit agencies that represent an otherwise voiceless community for whom we advocate.

"It is our wish that those who care about the quality of life and safety of individuals who experience disabilities will join us in calling for a review of the current funding mechanisms…

"The funding deficit is not limited to direct care staff but also, with such complex billing and reporting obligations that go along with state and federal programs, there is a crucial need for sophisticated financial management and internal controls. The level of expertise and experience needed to track, control, report and manage the range of different government-financed programs that fund the services nonprofits provide is expensive. Thus, we need adequate funding for both direct care services and for the required financial management and accountability that nonprofits seek.

"…Please join us in getting this message out on behalf of those who do not have a voice in the public policy process."


Well-said, Montana service providers!

Read the full article here...