This is from featured news on the National Autism Network website:
Meet VOR: An organization that unites by refusing to redefine individual choice
Mar 04 2014
By Tamie Hopp, VOR Director of Government Relations & Advocacy
I am delighted to have this opportunity to introduce you to VOR, an organization that is really like none other.
VOR is a national, nonprofit organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.
We are the only national advocacy organization that has not redefined terms that other disability advocates have hijacked, like “choice” and “community.”
For 30 years, VOR has remained true to the families we represent by putting their seasoned insights and perspectives first. To us and them, “choice” really means choice. Our advocacy is driven and guided by an undeniable truth: Individuals and their families know best.
To get to know VOR even better, we are offering a complimentary e-subscription to our publications through June 2015, no strings attached, including our weekly VOR E-News Update and our newsletter, The Voice, published three times a year. Just send your email address to info@vor.net with your request. Your email will never be shared or sold.
You will find VOR unique and refreshing in this day and age of advocacy. We respect individual differences, and reject “broad brush” policies that apply to most individuals with disabilities, but not all. In our view, such an “all or nothing” approach is not person-centered or individualized and imposes an ideology on the most disabled members of our society and places them at risk.
VOR’s advocacy – our walk to support our talk – is carried out at the state and federal levels by an army of members and volunteers, the vast majority of whom have family members with profound cognitive disabilities.
In state houses, court rooms, Congress and the media, we are doing all we can to help change the conversation away from ideological notions of what is best for all people with developmental disabilities, to what each individual needs. We challenge laws, seek reforms and help families.
In short, VOR is doing all we can to answer what “Autism Daddy” says is the question many parents of autistic children and adults are afraid to ask, “Where Will He Live When We're Gone?”
VOR demands realistic answers to this question by working to ensure that the system is responsive to all needs, and working in coalition to expand housing and vocational options and challenging efforts at all levels, including our federal government, to eliminate specialized residential, vocation, and support services.
The need is significant. 3.5 million people with I/DD and autism are living with family caregivers (many who are elderly), there have been less than a quarter million out-of‐home residential opportunities funded in nearly 20 years, and 268,000 Americans with I/DD are on waiting lists for services.
Does it make sense to eliminate specialized service options for people with profound needs because of someone else’s notion of “inclusion” and “community?”
VOR’s vision of the world puts individuals and their families in the driver’s seat, not federally-funded advocates that attempt to speak for you and your family.
VOR is 100% privately –funded, supported entirely by our members, primarily families like you.
We invite you to learn more about VOR at www.vor.net; and don’t forget out our complimentary subscription offer (to get signed up, send your request to info@vor.net).
The more advocates we have speaking up in support of individual rights, family rights and common sense, the more successful we will be.
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About the National Autism Network:
The National Autism Network is the largest online resource for the autism community providing a social network, nationwide provider directory, events calendar, discussion forums, autism news, expert written content and thousands of resources. Our mission is to unite and empower parents, providers, family members and individuals on the autism spectrum by providing a growing community rich in knowledge and expertise with a common goal of working together to make a difference in the lives of those affected by autism. We are all in this together as one community!
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| Winter Extended |
Ed Diegel, a parent from DD Advocates of Michigan, has been covering problems with the service delivery system for people with developmental disabilities in the Detroit/Wayne County area of Michigan for a long time. Recently, he has sent out email newsletters that include family testimonials to illustrate the problems that families experience. It is refreshing to see families willing to come forward to tell their stories. Experiences shared among families attempting to find appropriate services for their loved ones make us all feel less isolated and and a little less frustrated by the process.
As Ed says, in his first newsletter of 2014, "Without this exchange of stories we are easily treated as individuals with bothersome problems rather than as partners in a process that needs to be corrected; we end up feeling marginalized and being treated as if we are the problem rather than part of the solution…"
One theme running through the family testimonials is the insistence by Community Living Services (CLS), the largest provider network in the Detroit area, that clients adhere to the organization's ideological principles in selecting services, rather than allowing the needs and preferences of individuals and their families determine the services provided. While other agencies willingly support individual choice in skill building programs, sheltered workshops, and day programs, CLS has determined that these programs are off limits and not sufficiently integrated into the community, even though they are services covered by Medicaid. Many of the complaints have to do with the PEP Center in Livonia that provides services that CLS refuses to pay for, although other provider networks are more accommodating.
Ed says, "The PEP program has thrived over the recent past. Starting off in rented space on Five Mile it is now in its third building; each of the moves was required in order to support growing enrollment. It is the only day program that I consistently hear positive support for; admittedly, I travel in a small circle, but the observation is valid. They are doing something different to maintain enthusiasm and yet the largest MCPN in the county refuses to contract there."
This is from the Fosgard family:
"Cory has attended exercise class and other opportunities at the Pep Center in Livonia. The staff is loving, caring and professional. They treat Cory with respect, and he enjoys his time there. I had wanted to use this center for Cory’s respite dollars and for work opportunities after he graduates. Unfortunately, Community Living Services will not allow his dollars to be used there. They do not feel the program fits their 'vision'. I believe their slogan, 'Your life your way' is hypocritical. The life Cory enjoys is being denied by people who do not know him, or what is best for him. Programs for persons with special needs are not one size fits all."
Ed comments: "The whole concept of Self Determination is to allow individuals to live where and with whom they choose and to spend their support money on the programs they believe will be most beneficial. In this environment an individual is allowed to hire support staff, choose a home to live in (as long as it meets certain CLS guidelines), budget home and food and entertainment dollars but then be told that, empowered with all these other life choices, they are too inept to choose an appropriate skill building program!"
From the Seizer family:
"…CLS will not let [our daughter participate in the PEP Center program]. This is in direct opposition to the slogan on their business cards which says: 'Your Life, Your Way'. That’s not what Kara is experiencing as a CLS consumer, she is being asked to set up her life 'CLS’s Way'…Also by forcing the family to change providers to get the pep center services, [we] will have to discontinue working with staff who have worked very successfully.
"It also is not healthy for Kara to be with a one on one direct hire person 5 days a week. She needs and wants the socialization and friendships in her life. We would like to stay with CLS and not have to switch to Synergy but in April it will be a year and it seems we are advocating but no one is listening."
From the Whalen family:
"This past year we have heard much about CLS and their push to be rid of day programs. We originally joined CLS because their motto was 'Your Life, Your Way.' Because their current philosophy is changing to your life, their way, we are in the process of switching Mike to Consumer Links."
[Wayne County residents having problems with Community Living Services can expect little help from the state's largest advocacy organization for people with DD, The ARC Michigan. The philosophy of CLS is identical to that of our state ARC. This is not surprising when one realizes that the Chairman of the CLS Board of Directors is Dohn Hoyle who is also the Executive Director of The ARC Michigan. This presents a conflict of interest when parents turn to the self-proclaimed defenders of the rights of their disabled children only to find the ARC is so deeply entangled with the largest provider network in the area.]
Anonymously, from another parent about heartbreaking conditions in a loved ones group home:
"My son and so many others cannot speak for himself. He cannot tell me if they really went for a walk or if the staff was sound asleep. Saturday I was told my son was going on a specific outing. I know staff at the place where the outing was to be, he was never there. If I say anything, nothing is done. Per management I have no right to know if staff is talked to…
"It has been a difficult struggle. Recently I have made many calls to various people. Unless I want to file recipient rights, they do nothing. I personally know other people who have made calls concerning a group home. No change whatsoever. I had hoped the new 'Authority' [Detroit Wayne County Mental Health Authority] would open their eyes and see that things are not as they portray. It is a sad situation. Thank-you for a least letting me tell you about my concerns."
If you want Ed Diegel to send you his newsletters, contact him at ddadvocates@gmail.com . The newsletters are also posted on the PEP Center Website.
According to an article in the Tampa Bay Times, "Testing for profoundly disabled children gets increased attention", 2/26/2014, Florida parents are having difficulty exempting their children with profound disabilities from taking state standardized tests:
"While her 11-year-old son Ethan lay dying last month, Andrea Rediske had to convince the boy's school district he could not take the state tests.
"Ethan's teacher made daily visits to assess his progress — even when he was in hospice care.
"'Seriously?' Rediske wrote in a Feb. 4 email to Orange County School Board member Rich Roach. 'Why is Ethan Rediske not meeting his sixth-grade hospital-homebound curriculum requirements? BECAUSE HE IS IN A MORPHINE COMA. We expect him to go any day.'"
"The boy died three days later."
Parents and teachers of these profoundly disabled students - students who cannot see or communicate who are required to answer questions about pictures they are shown, for example - are getting increased attention from the Florida legislature.
There is an alternate assessment that can be given to 1% of Florida's school population, that better measures progress for many students with disabilities. Even the alternate standardized test, however, does not correlate with the performance of students with profound disabilities. Many parents feel the testing is disrespectful of their children and irrelevant to measuring the benefits of their educational programs. A bill has been introduced in the Florida legislature that will make it easier to exempt these students from standardized testing. Consideration is being given to changing teacher evaluations to give teachers of disabled students some slack so that they are not penalized by their students' test scores.
State Education Commissioner Pam Stewart defends the use of assessments for all students:
"'We all know that the only way to guarantee success in any endeavor is to set goals and measure our progress,' Stewart said. 'Measuring progress is key to successful learning, and I firmly believe that every child enrolled in a public school in Florida deserves the opportunity to have access to the best education possible. It would be a moral outrage to deny that opportunity to any child for any reason.'"
Is standardized testing for these students accountability or lunacy? I vote Lunacy - 100%. And excuse me, while I go bang my head against a wall.
This is from the Madison House Autism Foundation website, encouraging participation in a new coalition of groups supporting a broad range of options in housing choices for people with disabilities.
[Madison House Autism Foundation is a 501(c)(3) organization that was founded to identify the lifelong needs of adults with autism and through education, awareness, and advocacy, fill those needs.]
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Voices Uniting: Coalition for Community Choice
The Coalition for Community Choice has come together as a unified voice for increasing options and decreasing barriers to housing choices.
Several years ago, the Centers for Medicare & Medicaid Services (CMS) released a proposed rule change that included changes that defined what settings people with disabilities could use for their Home & Community-Based Service (HCBS) waivers, a funding resource that offers people the chance for greater choice of their desired service providers. Ironically, the proposed policy actually restricted options, and the responses to these changes were overwhelming (See LTO Venture’s Choice v Olmstead for a great commentary).
These changes provoked another round of modifications and release for public comment, which, despite previous feedback, continued to include restrictive definitions of “home and community”. The final version was just released, and the CCC is writing a policy brief to explain what these changes may mean for current housing options and the future development of innovative housing for people with disabilities. With almost one million people with intellectual and developmental disabilities still living with caregivers over the age of 60, policy should not be creating any barriers to new affordable housing options.
- 5 million people have autism or other intellectual and developmental disabilities (I/DDs), but residential placements are only available for 613,000 and barely increasing to meet the current need.
- Current data shows that there are still more than 200,000 individuals younger than 65 in nursing homes—almost 16 percent of the total nursing home population.
In light of these staggering figures, Madison House Autism Foundation committed to bringing together like-minded people and organizations in an effort to explore strategies to ensure that people with disabilities, not policymakers, have the right to define their own home and community. People, who have found their sense of belonging and purpose in intentional communities, who live and work in farm communities, who are planning to move into an apartment building with “smart home” technology and design strategies for their unique needs, or who choose to live in neighboring homes with their peers on the same cul-de-sac, have the right to live in a home and community of their choice.
If you believe people with disabilities should have the broadest range of affordable and accessible housing options, please contact Desiree at DKameka@MadisonHouseAutism.org to add your name and/or organization to the growing list of CCC supporters and stay connected for future advocacy alerts.
For more information: see the CCC statement of principles and list of current supporters.
I was looking forward to freezing rain this morning, but we are getting more snow. And it is thundering. Blogging is definitely in the forecast, but this distraction will have to do for the moment. -JB
This is a slightly edited version of the first of three email newsletters for 2014 from Ed Diegel at ddAdvocates:
One of the major concerns facing the Wayne County Community as we enter the New Year is the launch of the new Detroit Wayne Mental Health Authority. This launch will include a reevaluation of the MCPN [Managers of Comprehensive Networks - service provider networks] service delivery model and there is already a significant amount of political posturing taking place on behalf of the MCPN’s. In addition, there will ongoing struggles to balance resources between programs for persons with substance abuse, mental illness and developmental disabilities
One of our roles is to be sure that whatever the new service delivery model looks like, it is measured by qualitative metrics concerning the real needs of individual people; not by blind ideology, one size fits all thought processes or rules to simplify administration.
One of the real short comings of the current Recipient Rights and Medicaid Appeal processes is that they treat each short coming as an isolated instance and have no provision for enforcing systemic change. If 5 of us filed successful claims around the same issue, there is nothing in place that assures that the 6th person will not have to go through the same process to receive the same services. In a customer driven business activity, the organization responsible for the Rights or Appeal violation would be responsible for fixing the process for everyone, not just the individual who happens to be vocal and effective in making a case.
There is no mechanism in the current process -
- for sharing and embellishing what is good --there is a lot positive that needs to be given recognition and nurtured
- for pointing out what is systemically frustrating, wasteful and wrong
- for gathering data on unmet needs as perceived by individuals rather than by the administration
- and most importantly for publishing what we have done as individuals, family members, staff and administrators to obtain appropriate services for ourselves and for our loved ones.
Without this exchange of stories we are easily treated as individuals with bothersome problems rather than as partners in a process that needs to be corrected; we end up feeling marginalized and being treated as if we are the problem rather than part of the solution. And, of course, until there is organizational recognition of our issue, there is no administrative incentive to provide funding for it! [emphasis added]
I have been approached by a group of families who feel that their family member’s needs for effective programs are not being met. I asked them to share their stories so we can all learn from them and possibly provide some assistance and get some organizational awareness within the new Authority. Possibly these first stories will encourage you to share your good news stories or stories of unmet needs or stories concerning battles won and lost in today’s process.
Here is the first of the stories; thanks to the Fosgard family!
I am writing this letter on behalf of my son, Cory Fosgard. Cory is a 24 year old young man who has Down Syndrome. He is severely cognitively impaired and nonverbal so his father and I are his voice. We are blessed to have Cory in our family and plan to care for him for the rest of his life. As he is aging out of school soon, we are planning for his future. We are very concerned about the limiting of choices for Cory.
Cory has attended exercise class and other opportunities at the Pep Center in Livonia. The staff is loving, caring and professional. They treat Cory with respect, and he enjoys his time there. I had wanted to use this center for Cory’s respite dollars and for work opportunities after he graduates. Unfortunately, Community Living Services [a Wayne County provider network] will not allow his dollars to be used there. They do not feel the program fits their “vision”. I believe their slogan, “Your life your way” is hypocritical. The life Cory enjoys is being denied by people who do not know him, or what is best for him. Programs for persons with special needs are not one size fits all.
We have begun the process of switching to Synergy [another provider network] because they will allow Cory to use his dollars at the Pep Center. It is unfortunate that we have to go through this because CLS refuses to listen to the people their decisions affect. It is my hope that in the future people making policy for the developmentally disabled will truly listen to the people they serve.
Debbie Fosgard
Let us know your story; there are more to come and each of them is important!!!!
Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com
and now at ddADVOCATES.com
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| Koi Pond |
I don't care what the groundhog did yesterday, the prospects for spring anytime soon look pretty bleak from here. The only relief from the cold and frequent sub-zero temperatures came last week with a day or two with the temperatures rising to around freezing, adding freezing rain to the snow pack along with more snow.
Ed Diegel, from ddAdvocates of Michigan, has been sending email newsletters to people with developmental disabilities and their families to inform them of developments in the Detroit area and the new Detroit Wayne County Mental Health Authority (DWCMHA).
Before I get to Ed's news from Detroit, here is an explanation of the area's conversion from a Community Mental Health agency controlled by the Wayne County Board of Commissioners to an independent mental health authority with six members appointed by the Mayor of Detroit (or the Emergency Manager) and six appointed by the County Board of Commissioners. Two of the appointees must be consumers of mental health services. [Whether the switch to a mental health authority is a good idea is a topic of dispute among mental health professionals, consumers of services, and others affected by changes in state law in 2012.]
According to an article in Crain's Detroit Business, "Wayne County agency begins conversion to mental health authority", 9/25/13, the conversion began officially on October 1, 2013: "As the nation's largest county mental health organization with more than 100 employees and a budget of $640 million, the Detroit Wayne County Mental Health Authority funds five managed care provider networks that serve 74,000 people with mental health and other developmental disabilities." Tom Watkins, former state school superintendent from 2001 - 2005, is the new CEO of the DWCMHA.
Most of the agency's funding comes from Medicaid. No one knows exactly how the agency will be impacted by Medicaid expansion, but it is likely that it will be significatnt: "On April 1, Michigan will begin enrolling an estimated 470,000 additional people eligible for Medicaid. Some 300,000 are located in Southeast Michigan. Studies have shown that one in five people have some degree of mental health problem", according to the Craig's list article.
According to the Detroit Wayne County Mental Health Authority website, the DWCMHS "...is responsible for managing specialty services for Consumers with or at risk for serious emotional disturbance (SED), severe mental illness (SMI), developmental disabilities (DD), substance abuse, and MIChild beneficiaries. The Agency manages a full array of specialty mental and substance abuse services through contracts with Managers of Comprehensive Networks (MCPNs), two Substance Abuse Coordinating Agencies, and other contractors."
This is a slightly edited version of Ed Diegel's ddAdvocates newsletter from November 2013:
We have been slow to acknowledge the new Detroit Wayne County Mental Health Authority and to welcome its new leader, Tom Watkins. We should all do this as birth of the new Authority represents a first step away from complaints of bad politics and county mismanagement of the old Detroit Wayne County Mental Health Agency.
The new organization is barely on board and the State has announced steep cuts to the Wayne, Macomb and Oakland Mental Health Budgets for the 2014 Fiscal Year which began October 1, 2013.
For Wayne County the cuts are $15.0 million. So much for the State commitment to one of the most impoverished areas in the country. Macomb and Oakland [County] cuts will be 11% and 7% respectively. The cuts effective October 1, 2013 were not announced until September 27, 2013! This timing comes from an administration that wants to run the state like a business. No successful business does such poor planning that it announces policy shifts and budget actions of this magnitude 3 days before a budget cycle. The rationale for the cuts is that Wayne, Oakland and Macomb receive a disproportionate share of the state’s Medicaid dollars and therefore these reductions followed by incremental 5% reductions each year over time were put in place. There is no attempt here to measure the disproportionate concentration or severity of persons served, or differences in cost of living or other factors that a reasonable party might use. Furthermore according to one analysis, there is within the plan also disproportionate reduction of funding for persons with Developmental Disabilities.
To my knowledge, this is not a legislative action—the State Department of Mental Health led by Mr. James Haveman is responsible for this action. Furthermore, it is of such significant importance that the Directors of Mental Health in the three counties sent a joint letter of protest to Lansing—hopefully this is a sign of a new era of cooperation flowing from
the new Authority...
To receive Ed's ddAdvocates newsletter, email Ed at ddadvocates@gmail.com .
