Schoolgirl Signs Christmas Songs for Deaf Parents

Kansas poised to turn over DD services to for-profit health plans

This is from an article in Kaiser Health News posted on 12/5/13 called  "In Kansas, A Fight Over Developmentally Disabled Shifting To Medicaid Managed Care" by Jenni Bergal. According to the article, Kansas is poised to hand over all home and community-based services for 8,500 people with developmental disabilities to three for-profit Medicaid managed health plans on January 1, 2014:

"…What concerns families and advocates the most is that the three for-profit national insurance companies that run KanCare [the program through which the State of Kansas administers Medicaid] will be responsible for a statewide program that they’ve never managed in Kansas or elsewhere. They’re also worried that the need to make a profit ultimately will destroy a system families and advocates think works well.

"While Kansas will become the first state to make such a leap, it is being watched closely elsewhere, as at least two other states – Louisiana and New Hampshire – are considering moving in the same direction.

“'This is an unprecedented model. No state has ever taken a developmental disability population and placed it in an arrangement like this, with an out-of-state managed care system, all at once,' said Rocky Nichols, executive director of the Disability Rights Center of Kansas, a legal advocacy group. 'It’s almost like throwing everyone into the deep end of the pool.'"
 
Families believe the current system is working well and wonder why the state would take such risks with their DD family members:

"In Kansas, where a network of community-based nonprofit organizations and county agencies oversee these services, individuals can choose a case manager, who visits them at home and coordinates their care. In some cases, those relationships go back decades. While these organizations will continue to determine what services clients are eligible for and case managers will work with families to arrange that care, ultimately the health plans will be responsible.

“'There is a great deal of fear in the community that these big private health plans don’t know much about this population,' said Maureen Fitzgerald, disability rights director for The Arc, a national advocacy organization for the developmentally disabled. 'These are such vulnerable people. Mistakes that are just inconvenient to some can be devastating to them. If the home care person doesn’t show up, you could be lying in your bed all day. It’s kind of scary.'

"Only a handful of states, including Michigan and Vermont, have moved the developmentally disabled into managed care for long-term services. They’ve mostly relied on existing networks of community-based nonprofits or county agencies or have made themselves the managed care organization. None has turned exclusively to national managed care companies."

The health plans currently manage the medical care for people with developmental disabilities, but not the non-medical care and social services that so many rely on.

The article continues:

"[Governor] Brownback, a Republican, has said that KanCare will improve care coordination and reduce growth in Medicaid spending for the state and federal government by $1 billion over five years.

"Although the frail elderly, physically disabled and mentally ill are now getting long-term services through KanCare, inclusion of the developmentally disabled was delayed until 2014 by the legislature following bitter protests from parents, advocates and providers. Lawmakers wouldn’t yield again, even as more than 1,000 people rallied outside the Capitol in Topeka in May, many wearing red T-shirts that read: 'Not Worth the Gamble.'"

The state says that nervous providers have gotten families unnecessarily riled up about the plan, and has assured them that services won't be cut. 

"…But many are skeptical. They fear that the managed care companies will seek to boost profits by reducing services or driving some small providers out of business because of payment delays or denials. The companies say these concerns are unfounded and insist that services will be maintained and providers paid promptly."

This is certainly a situation that warrants watching. Kansas is going to turn over the management of home and community-based services for people with developmental disabilities to for-profit health plans that have no experience serving this population but are very good at making money. What could possibly go wrong?

Kaiser Health News (KHN) is a nonprofit news organization committed to in-depth coverage of health care policy and politics.

Poem for a Lucky cat

Lucky and Grandpa

My 15-year-old cat Lucky had to be put to sleep today. She was a fine old cat and a constant, if needy, friend. This is an ancient Irish poem written by a 9th century Irish monk about his cat. Lucky was just like Pangur Ban except Lucky was a "she" and not a "he", she was not Irish although she had the luck of the Irish, and she did not chase mice but had a preference for chipmunks. I am not a monk and I am too tired to sit all night hunting words. But I like the poem, especially the line "In our arts we find our bliss, I have mine, and he has his."

Pangur Ban

I and Pangur Ban, my cat,
'Tis a like task we are at;
Hunting mice is his delight,
Hunting words I sit all night.

Better far than praise of men
'Tis to sit with book and pen;
Pangur bears me no ill will;
He, too, plies his simple skill.

'Tis a merry thing to see
At our task how glad are we,
When at home we sit and find
Entertainment to our mind.

Oftentimes a mouse will stray
Into the hero Pangur's way;
Oftentimes my keen thought set
Takes a meaning in its net.

'Gainst the wall he sets his eye
Full and fierce and sharp and sly;
'Gainst the wall of knowledge I
All my little wisdom try.

When a mouse darts from its den.
O how glad is Pangur then!
O what gladness do I prove
When I solve the doubts I love!

So in peace our tasks we ply,
Pangur Ban, my cat and I;
In our arts we find our bliss,
I have mine, and he has his.

Practice every day has made
Pangur perfect in his trade ;
I get wisdom day and night,
Turning Darkness into light.'

Lucy the dog and Lucky the cat: BFFs

Steep cuts to Detroit area mental health budgets

This if from the DDadvocates Newsletter, November 2013, by Ed Diegel:

Welcome the Detroit Wayne County Mental Health Authority 

Lobby Against unprecedented Cuts to Mental Health Budgets in the Tri County Area

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 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.

What to do?

Please do this today—

1. Go to the new DWMHA web site  Go to the Contact Us page and send a message to Tom Watkins welcoming him and encouraging him and his staff in the new organization. Take the time to mention any gaps or unmet needs you are aware of in
   service delivery to persons with developmental disabilities.
2. Go to the DWMHA Home Page and find the link to your legislators
3. Use the link to send a note to your Representative and your Senator and inform them that the so-called Mental Health rebasing action will further dismantle services in the most needy counties of the state, is ill conceived and will create yet further economic burden in the tri county area. 
4.  Ask each of them to tell you what they will do to intercede. Don’t assume your legislator will support you in this. Remember, most Wayne County legislators voted AGAINST the creation on the newAuthority!

Thanks, and Happy Thanksgiving to each of you!!
 
Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com
and now at ddADVOCATES.com

Ann Arbor paper recognizes a local hero

This is from Ann Arbor Family, a free local advertising paper that features stories about people and events in the Ann Arbor area. Stephanie is one of my own personal local heroes from Just Us Club, a non-profit organization that provides after school care, an adult activity program, and respite care  for  children and adults with moderate to severe disabilities.

 Special needs Helping Heroes by Nan Bauer:

Stephanie Swain 
Program Director for the Just Us Club

Coming from an Ypsilanti family of 11 kids, Stephanie Swain realized early on that she had a heart for childcare. A Special Ed teacher by day at the High Point School in Ann Arbor, Stephanie’s the program director for the Just Us Club, an after school option open to any students with disabilities who can function in a group setting. “We have a huge range of kids here: cerebral palsy, muscular dystrophy, Down syndrome, autism spectrum,” she says. “We have a pretty unstructured program, because the kids want to relax after a day at school, so we play games, do art, and we have music therapy once a week.” She also offers respite care, giving parents some precious free time while she hangs out with the kids. Even with her jam-packed schedule, she’s found time to continue her education and is on the verge of receiving her master’s degree and gearing up for a PhD. “I’m super passionate about helping parents understand their kids’ behaviors,” she says. “If I can help alleviate some of the anxiety that parents can feel when their child has a meltdown or just acts up in an extreme way, the environment gets better for the whole family.”

Learn more about the  Just Us Club at justusclub.org/contacts.html

More housing projects for people with autism and other disabilities

"The Architecture for Autism" by Michael Tortorello is an article from the New York Times, 10/9/13, about new parent-initiated housing projects for people with autism.
 
An new template for building housing and communities for people with autism was developed in 2009 by Kim Steele and Sherry Ahrentzen who collaborated on “Advancing Full Spectrum Housing,” a comprehensive design guideline for housing adults with autism.
 
According to the article,  "Perhaps the first development to closely follow their template is Sweetwater Spectrum, a residence for 16 adults whose abilities and disabilities span the full range of autism. The innovative $10.4 million project opened in January in the heart of California wine country, and its founding families and board hope to make Sweetwater a model for like-minded experiments across the country."

"…Sweetwater’s mission statement lays out some ambitious principles. Residents will be able to age in place. The community should 'accommodate a broad financial spectrum,' subsidizing residency for a quarter of its tenants. And attendants (who are not Sweetwater employees) should be offered incentives to encourage stable, long-term care relationships."

Here are some of the details about how houses are designed and equipped to accommodate people with autism:

• "'..there is a floor drain in every bathroom. As Ms. Maytum explained, 'Water can be a really interesting activity for people with autism.
• "Safety and security were other concerns. The kitchens use induction cooktops to limit the possibility of burns. And while the perimeter fence is slotted ..., solid planks span the bottom few feet. Residents are free to walk out the front gate, but it’s probably best that they not treat the fence like a ladder. 
• "A bigger design challenge was to see a house through the eyes of an autistic client. For example, the layout of all four dwellings is identical: a neighbor’s place should feel like home. And multiple seating options encourage an individual to be near the action without necessarily plunging into the fray.
• "Another way of limiting noise annoyance was to place pairs of bedrooms on opposite sides of the house, instead of in a dormitory-style row…

This, like other planned housing for people with disabilities, is an open-ended experiment. Cost is one barrier to making it available to a large number of people. "…families pay $39,000 a year for a child to live at Sweetwater. That expense, said Ms. Steele, the researcher, 'will preclude people who don’t have a trust fund or wealthy parents from living there.'" Sweetwater does, however, provide scholarships for a number of residents.

Another housing project is Airmount Woods in Bergen County, New Jersey.  Airmount Woods is "a new eight-unit residence developed by Bergen County’s United Way and operated by the service agency New Horizons in Autism."

"The twin four-bedroom houses will use some of the latest concepts in building for autism. But the real innovation may be the way it promotes special-needs housing as a community asset. That term is not just a stock phrase. Airmount Woods belongs to a nonprofit group called Ramsey Housing Inc., formed by the Borough of Ramsey. The mayor, Christopher Botta, sits on the board, and he dropped by on a recent morning to show off the project. Almost every one of his constituents knows someone with autism, the second-term Republican mayor said. This isn’t housing for strangers."

Here are two innovative housing projects for people with developmental disabilities in Michigan: Benjamin's Hope and Harbor House Ministries. 

LTO Ventures, is a non-profit organization with information about housing and planned communities for people with autism around the country.

HUD: Housing for hearing-impaired has too many deaf residents

"It's nice to have a life that's equivalent to other people that are not deaf," said resident Linda Russell. "This building is designed for deaf people, by deaf people, and we know what is best for our needs. And people that don't understand our needs, should not be putting themselves in decision-making positions for us." Resident of Apache ASL Trails senior housing project.

According to a report from FoxNews.com, 10/21/13, "Feds try to eliminate housing for the deaf -- at complex built for hearing-impaired", the federal Department of Housing and Urban Development (HUD) is telling Apache ASL Trails in Arizona, a housing project for deaf seniors, that they are discriminating against the non-deaf.

A memo from HUD on the housing project says, "A preference or priority based on a particular diagnosis or disability and excluding others with different disabilities is explicitly prohibited by HUD's Section 504 regulations…There is no legal authority contained in any of Apache Trails funding to permit such a priority or preference." 

Even though HUD approved the apartment building project in 2008 and helped fund it,  HUD is now "…threatening to pull all federal housing aid to Arizona unless it limits the number of hearing-impaired residents to 18 people." 

According to the report, "All 74 units at Apache ASL Trails accommodate wheelchairs. Blinking lights signal when the doorbell rings and when utilities like the garbage disposal and air conditioning are running. A video phone lets residents 'talk' with friends." Ninety-percent of the units are currently occupied by deaf and deaf-blind seniors, but HUD wants to impose a quota of only 25% hearing-impaired residents.

The dispute over the Apache senior housing project is a continuation of HUD complaints covered in an article on April 28, 2013 in the New York Times:  "A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination". 

One rationale used by HUD in claiming discrimination by the Arizona housing project is Section 504 of the Rehabilitation Act .

According to the HUD website on people with disabilities:
 
"Section 504 of the Rehabilitation Act of 1973 states: No otherwise qualified individual with a disability in the United States. . .shall, solely by reason of her or his disability, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program, service or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. (29 U.S.C. 794). This means that Section 504 prohibits discrimination on the basis of disability in any program or activity that receives financial assistance from any federal agency, including the U.S. Department of Housing and Urban Development (HUD) as well as in programs conducted by federal agencies including HUD."

On the website explaining the jurisdiction of HUD in answering complaints of housing discrimination there is an example of when a specific disability may be an eligibility requirement of participation in a program:

"HUD considers several factors in determining if it has jurisdiction to investigate the complaint. … the Department must determine whether the individual, or the person the individual represents, is a person with a disability as defined by Section 504. The Department also must determine if the individual is "otherwise qualified" for the program or activity alleged to have discriminated. …In some cases, disability may also be an eligibility factor. For example, if a housing program is set up under the Department's Housing Opportunities for Persons with AIDS (HOPWA) program, and the complainant's only disability is a visual impairment, the person would not be qualified for the HOPWA project because that project is designed to meet the needs of persons with AIDS. [emphasis added] Therefore, HUD would lack jurisdiction to process this complaint under Section 504."

Under some circumstances, a specific disability is a criteria for eligibility for a federally funded program and people with other disabilities may be excluded. 

Other ironies abound: This is a senior housing project, but apparently there is no charge that younger people are being discriminated against. Although 90% of the residents at Apache are hearing-impaired, 10% are not, . How can the claim be made that non-deaf people are excluded? No actual person has claimed that they have been discriminated against by the project. It appears that only HUD has gone through the mental contortions necessary to justify a charge that actual discrimination is occurring at Apache ASL Trails housing project.

What's next? Hospitals discriminate against the non-sick? Jails discriminate against non-criminals? High Schools discriminate against 5-year-olds? Soccer leagues discriminate against the soccer-impaired?

Wyoming : Working together better than circling the wagons

..not circling the wagons

This editorial is from the Caspar Wyoming Tribune and appeared in the VOR Weekly News Update for September 27, 2013   

It also appeared in the Lander Journal (“Working Together,” 9/25/2013), the Gillette News Record (“Wyo. needs to do more for developmentally disabled,” 9/25/2013) and the Wyoming Tribune Eagle (“Families of the disabled must carry their torch,” September 20, 2013)

Connie Howard is VOR’s Wyoming State Coordinator. Connie’s son, Mark, has profound intellectual disabilities and has received high quality, specialized supports in both facility-based and community-based settings.  

*****************************************************

We must work together, not apart 
by Connie Howard
 
September 21, 2013 
Casper Star Tribune
Casper, Wyoming 

I have been advocating for people with developmental disabilities for 53 years. By no coincidence, that’s also how old my son is.

Mark is developmentally disabled. While young, I never said “I want to be an advocate for people with disabilities when I grow up.” Like so many other families of individuals with developmental disabilities who daily advocate for their loved ones, my son has brought out the advocate in me.

While my advocacy is certainly motivated by my son and his needs, I also recognize that he is part of something much bigger. Mark is part of a population of developmentally disabled adults who are served by a complex web of state and federal programs all designed to ensure that he and his peers are adequately and safety served in settings of their choice. 

Calling on the general public to support the least-abled among us is the greatest moral test of our government and its people, as noted so aptly by Hubert Humphrey.

The compassion of the general public in helping to provide my son and his peers the supports they need is not lost on me. I recognize that what Mark receives is a blessing, not an entitlement.

But, the system is not perfect and that motivates me too.
 
The system allows aging parents to continue caring for their middle-aged loved ones with developmental disabilities long beyond what is reasonable. The system allows 600 Wyomingites in desperate need of services to wait. Worst of all, because it can hinder (or stop) progress, legislative debates about the system’s future encourage infighting among advocates for people with disabilities.

Recent proposals suggest that Wyoming’s main Medicaid programs for people with disabilities – the Wyoming Life Resource Center and community-based programs—must be cut (translation: individuals will lose services) to provide funding for people waiting for services.

Don’t get me wrong. People in need should not have to wait another day. But, how is “robbing Peter to pay Paul” a solution?

Yet, even as every advocate sees the injustice of depriving one segment of the population to meet the needs of another, it still takes a collective resolve to avoid “circling the wagons” in support our own programs.

On Sept. 26, Gov. Matt Mead, like many state officials and legislators before him, will visit the Wyoming Life Resource Center. I am encouraged by these visits. Too often, elected officials make policy “sight unseen.” Mead will see firsthand the wonderful care my son and his peers receive. He’ll see profound needs being served so compassionately.

If given the chance, I will use this opportunity to encourage the governor’s support for a broad continuum of supports, services, residential, and employment options that match the broad spectrum of abilities, needs and preferences within the disabled population. I vow not to “circle the Wyoming Life Resource Center wagon.” My support for WLRC will be clear but not exclusive. A continuum of service options is needed.

I will also continue my advocacy in Cheyenne, attending rallies in support of expanded community-based programs, while also speaking in support of the great need filled by WLRC.

I will also encourage many more fellow advocates to do the same. As Pastor Rodger McDaniel wrote in his blog, “The developmentally disabled, their families and advocates should flood the Capitol building. They should occupy the rotunda of the building, filling it with the faces of the people who will suffer the impact of the choice the Legislature made.”
 
Families of Wyomingites with developmental disabilities must carry the torch for our loved ones, and we must do all we can to carry this torch hand-in-hand. 

For if not us, then who?

The ARC Michigan to the State : Stop funding congregate settings

...sentenced to a bucolic lifestyle

The ARC Michigan is at it again, demanding that the state discontinue Medicaid funding for people with developmental disabilities participating in programs that don't meet the ARC's approval. This time around, The ARC MI, a state advocacy organization for people with DD, is backed up by five other advocacy groups whose executive directors co-signed a letter to James Haveman, the director of the  Michigan Department of Community Health (MDCH). Despite the backing of the Autism Society of Michigan, the Epilepsy Foundation of Michigan, the Michigan Disability Rights Coalition, United Cerebral Palsy of Michigan, and Michigan Protection and Advocacy Service, the ARC is still not persuasive in arguing that people with DD  are being discriminated against when they choose to participate in specialized programs designed for people with disabilities.

The complaint by these advocates appears to be based on the misconception that any congregate setting (a setting that serves more than two or three people with disabilities in a group to provide specialized services or residential options) is by definition discriminatory. They claim that this comes from the Americans with Disabilities Act (ADA) and the 1999 U.S. Supreme Court Olmstead decision, but this is easily disproved. This misreading or misinterpretation of the law makes one wonder if the executive directors of these influential organizations have ever read the ADA or Olmstead. Their misconception, however, is  prevalent among many government-funded advocacy groups and is even being used by state and federal governments as an excuse to eliminate specialized services and programs for people with DD. Who knows whether the advocates have deliberately misinterpreted the law, or whether they have come to believe their own misconceptions after hearing them repeated over and over again.

The project that is receiving the most attention from these groups at the moment is Benjamin's Hope, a non-profit in Holland, Michigan. This is a newly opened parent-initiated project that will eventually house 24 people with autism and other developmental disabilities in custom-designed homes. A 40-acre campus will provide recreation, meaningful employment, and other programs for both residents and the larger Holland and Ottawa County communities. It is a public/private model, that uses public funds for direct care. Medicaid "Home and Community Based Services" funds pay for direct services for participants but specifically do not pay for housing, food, or other basic supports. (HCBS funding is generally available for eligible DD adults regardless of where they live.)

The advocates shrilly contend that the existence of projects such as Benjamin's Hope reverses policies "in the direction of integration and inclusion…" They find them "unwarranted and frightening", calling the "demand" for public dollars "a form of blackmail...They are saying we will decide where and ho[w] people, including our children, with developmental disabilities will be served well past our life time. They will be isolated, segregated and served in institution-like situations, albeit a private one, using public dollars."

"…should Medicaid/CMS [the federal Centers for Medicare and Medicaid Services] end up permitting funding, generations of persons with developmental disabilities will be sentenced to occupy isolated settings separate from real community and the rest of us, even if at some artificial point community contact is attempted." [click here for more on the controversy over proposed CMS rules.]

Blackmail? Isolation and segregation? Institution-like situations? That's strong language for these organizations to use, especially considering that their letter offers no evidence to support any of these accusations. I know of no individuals living at Benjamin's Hope, for instance, who had to blackmail their local Community Mental Health agency to receive funding. It is safe to assume that people involved in the project were funded only after a careful process of individual evaluation, person-centered planning, and the weighing of possible alternatives. Their families most likely did a great deal of soul-searching before they made the momentous decision to place the care of their loved-ones in the hands of others.

Just how isolated and segregated are the people living at Benjamin's Hope? Within two weeks after the ARC Michigan letter was written and signed, Benjamin's Hope held its grand opening,"the Firelight Festival of Hope", that included not only the people directly involved in the project, but hundreds of people from the community enthusiastically showing their support.  In addition, State Senator Arlen Meekhof and state Representative Amanda Price presented a tribute honoring the non-profit, signed by Lt. Governor Brian Calley whose daughter has autism. The success of Benjamin's Hope is strongly  linked to the fact that it is engaged with and supported by its surrounding community.

Furthermore, as far as I am aware, no one involved in Benjamin's Hope or any other family-initiated and community-supported project ever suggested that they intend to impose their model of community living on any individuals who do not want it. This is in sharp contrast to the approach taken by the professional advocacy organizations.

Perhaps the ARC and the co-signers of the letter to the State would not have found projects such as Benjamin's Hope so "frightening" if they had ever bothered to talk to the people involved or to their families. None of the executive directors who signed the letter bothered even to contact the director of Benjamin's Hope.

Could there be a more obvious display of the arrogance of advocates who are so sure that they know what is best for everyone that they never have to contemplate the harm they may be doing to the people they claim to represent?

********************************

Links to documents:

Letter to CMS from Dohn Hoyle, the ARC MI Executive Director, 8/13/13
Letter to CMS from U.S. Representative Huizenga supporting Benjamin's Hope
Letter to MDCH from The ARC MI and other advocacy groups 9/3/13

The ADA, Olmstead, and Choice: 

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities. It requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities”, but it does not define what an appropriate setting is for every person with a disability. Identifying needs and the appropriateness of settings can only be determined on an individual basis.

The Olmstead decision determined that unjustified institutionalization is discrimination. Transfer to a community placement from an institution is required only if the State’s treatment professionals have determined that community placement is appropriate, the individual affected does not oppose the transfer, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of other with mental disabilities.
 
Olmstead Resources
1999 U.S. Supreme Court Olmstead Decision
Olmstead Presentation by Bill Burke
What Olmstead is Not

VOR: Respecting Individual Choice

VOR is a national organization that supports a full range of service and residential options to meet the diverse needs of people with disabilities. Unlike many nationally known advocacy organizations for people with intellectual and developmental disabilities, VOR receives no government funds. VOR supports individual and family participation in decision-making . 

The following is a statement of Key Principles : Ensuring Rights and Opportunities for All People with Disabilities

******************************************

September 2013 

Respecting Individual Choice: The Rights of All People with Disabilities

VOR is a national organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).

For 30 years, VOR has been representing families of individuals with I/DD, many of whom experience severe and profound developmental disabilities, have multiple physical disabilities, and are medically fragile or experience dangerous behaviors.

Underpinning each “Key Principle” is respect for diversity of need and individual choice. Most individuals with disabilities are capable of determining job opportunities, leisure activities, and housing options, and have the right to exercise individual choice, with any necessary supports. Other individuals experience profound I/DD or other serious I/DD and medical and/or behavioral disabilities. These individuals have rights, too, and need the support of their families and legal guardians to ensure that their choices for housing, employment, and services are safe, comfortable and responsive to their needs.

In developing principles that reflect individual differences, VOR rejects a “broad brush” approach to rights and principles which apply to most individuals with disabilities, but not all. In our view, such an approach is not person-centered or individualized and imposes an ideology on the most disabled members of our society and places them at risk. Principles relating to “choice,” “inclusion,” “integration” and “community” become limiting – not liberating - goals. “Choice” no longer means true and informed choice, and “inclusion,” “integration,” and “community” relate to type of living arrangement – bricks and mortar – without regard to access to services, reliable transportation, appropriate work opportunities, time with friends (disabled or not) or whether there is any real interaction with neighbors. Isolation in the name of integration is not “community.”

VOR embraces the rights of ALL individuals with disabilities and supports a system that is responsive and respectful of individual needs and preferences. We recognize the need for a broad continuum of supports, services, residential, and employment options that match the broad spectrum of abilities, needs, and preferences within this population.

In conclusion, VOR’s Key Principles in support of “Ensuring Rights and Opportunities for People with Disabilities” are fully inclusive of the entire disability population and do not narrowly  limit choice to specific housing and employment options. We strongly believe that the preferences and needs of some disabled individuals should not deprive another segment of the population of their rights and preferences. VOR advocates for reason, recognizes diversity, and supports the rights of all individuals to live in a community of their choice.

Ensuring Rights and Opportunities for All People with Disabilities

Key Principles

General Principles

“Individuals with disabilities” describes a widely diverse group of people, ranging from people with mild physical and/or intellectual disabilities to those with profound or other severe intellectual disabilities, along with medical or behavioral disabilities.

“Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.” DD Act, 42 U.S.C.15001(c)(3)(2000).

Most individuals with disabilities are capable of living just like people without disabilities and should have the opportunity to do so. These individualswith disabilities should have control over their own day, including which job or educational or leisure activities they pursue, and where and how they live, with any necessary supports.

Support for full community integration of most individuals with disabilities should not be interpreted to deprive individuals with profound intellectual and developmental disabilities (I/DD) or other serious I/DD and medical and/or behavioral disabilities from assurances of proper care of their health and safety needs, and individuals with disabilities should not be forced to accept services or participate in activities they do not wish to accept. As Justice Ginsburg wrote in the Olmstead decision, “Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case by case basis, that setting may be in an institution.” (emphasis added)

Choice

Individuals with disabilities and, where appointed by a court, their legal guardians, should have the opportunity to make informed choices among all legally available options. They must have full and accurate information about their options, including what services and financial supports are available.

Employment

Most individuals with disabilities should have the opportunity to be employed in regular workplaces. Most individuals with disabilities can be employed and earn the same wages as people without disabilities. When needed, individuals with disabilities should have access to supported or sheltered employment, or other day activities, to ensure fulfilling and productive experiences.

Housing

Individuals with disabilities have the right to choose where to live from an array of residential options.

Most individuals with disabilities can live in their own homes with supports and they should get to decide where they live, with whom they live, when and what they eat, who visits and when, etc.

These choices for most individuals with disabilities should not deprive individuals with profound I/DD or other serious I/DD and medical and/or behavioral disabilities from the right to live in congregate arrangements, multi - unit buildings or complexes that cater to specific needs, according to individual choice and need.

Public Funding

Government funding for services should support implementation of these principles to assure a full array of residential and service options to accommodate the diverse needs and preferences of the disabled population. Financing for long-term services and supports must be responsive to the needs of all individuals with disabilities, recognizing that the cost to care for individuals must necessarily vary and be responsive to varying needs.

For more information about VOR, visit www.vor.net.

VOR’s Policies and Positions Statement, which reinforce VOR’s Key Principles, are found here.

Kaiser Health News: "States Balk At Terminating Medicaid Contracts"

Kaiser Health News is an excellent source of information on health care and health care reform. See About KHN.

This article, from Kaiser Health News is about states that can't seem to separate themselves from Medicaid contractors that have defrauded them, misused Medicaid funds, and otherwise failed to meet their obligations under contracts with state Medicaid agencies.  

Most states give the excuse that they do not want to disrupt care to Medicaid recipients by abruptly canceling contracts with health plans. The hesitancy of states to cancel contracts or otherwise penalize contractors for abuses may have more to do with the relative powerlessness of Medicaid recipients (who are poor, disabled, and elderly) who bear the brunt of poor quality or unavailable services and the relatively powerful health plans and their political clout with state decision makers.

Here are some excerpts from the article at KHN:

"In Florida, a national managed care company’s former top executives were convicted in a scheme to rip off Medicaid. In Illinois, a state official concluded two Medicaid plans were providing 'abysmal' care. In Ohio, a nonprofit paid millions to settle civil fraud allegations that it failed to screen children with special needs and faked data.

"Despite these problems, state health agencies in these — and other states — continued to contract with the plans to provide services to patients on Medicaid, the federal-state program for the poor and disabled."
...
"States are increasingly turning to insurance companies to provide coverage for people on Medicaid in hopes of saving money and improving care. About 30 million Americans on Medicaid now belong to a managed care plan, and beginning in January, millions more will become eligible under the federal health law. Many will be placed in managed care.
 
"Thirty-six states and the District of Columbia have enrolled some or all of their Medicaid population in private health plans, many of them owned by major insurers that operate in multiple states."
… 
"Advocates say that states need to do a better job of policing problem plans and not wait until a contract is up for renewal to pull the plug.

"'You have a situation where too many states take a hands-off approach. I think there’s a significant risk of substantial harm to consumers,' said Alice Dembner, project director for Community Catalyst, a national health care consumer advocacy group.

"Dembner’s group is surveying states to find out if — and how — they sanction managed care plans, focusing on companies that operate in multiple states.

"'So far, we found that only a small number of states impose fines and many of them are for paperwork violations — the plans didn’t file this form or that form on time,' Dembner said, noting that just a handful of states have levied sizeable penalties." 

Texas

"Linda Edwards Gockel, spokeswoman for the Texas Health and Human Services Commission, said that in 2009, officials were concerned about a pilot program in the Dallas-Fort Worth area run by Evercare, a subsidiary of UnitedHealth Group. The program, which coordinated care and long-term services for the elderly and people with disabilities, had been fined more than $600,000 for not providing proper access to care and failing to coordinate services.

"Gockel said Texas decided to cancel the contract 15 months early, but continued to do business with Evercare because the problems in Dallas-Fort Worth weren’t affecting services it was providing elsewhere."

Illinois

"In Illinois, Medicaid Deputy Administrator Jim Parker said his office was unable to cut ties with Harmony Health Plan, a subsidiary of WellCare Health Plans, and Family Health Network, a nonprofit community plan, even though they had serious quality problems over a decade.

"'Their performance was abysmal,' Parker said, noting that their quality rankings were in the low percentiles.

"Parker said one reason the state kept awarding them contracts was that they agreed to participate in a program in several counties in which members enrolled voluntarily and weren’t required to join. Most companies weren’t interested in that business because there wasn’t a guaranteed number of patients.

"The other reason was more complex.

"'Managed care can be a big political issue at the state level,' Parker said. 'You had a divide in Illinois. Republicans in the legislature were pushing the state to go to more managed care. In light of that, it was not politically feasible to get rid of the existing plans. They were around for political reasons.'"

Ohio

"CareSource, a Dayton, Ohio-based nonprofit Medicaid plan, agreed in 2011 to pay the federal government and the state $26 million to settle civil fraud allegations that it failed to provide screenings and other services for adults and children with special needs and submitted false data to the state. The company denied the allegations, but said it settled to bring the matter to a close.

"CareSource spokeswoman Jenny Michael said the company had no comment.
 
"Ohio Medicaid spokesman Sam Rossi wrote in an email that the settlement 'did not include any actual finding of wrongdoing, and there was never an allegation of consumer harm.' He said CareSource has taken steps in recent years 'to better document the services it provides.'

"CareSource remains Ohio’s largest Medicaid managed care plan."

Health plans operating in multiple states

"Another plan that faced fraud allegations was Amerigroup Corp. of Virginia Beach, a national managed care company that currently operates in 12 states. It agreed in 2008 to pay $225 million to the federal government and Illinois to settle a civil case that alleged it had defrauded the state’s Medicaid program because it avoided enrolling pregnant women and unhealthy patients and submitted thousands of false claims to the government. The company did not admit any wrongdoing.

"Amerigroup, which was purchased by WellPoint in late 2012, had already left Illinois when its contract expired two years before the settlement. The other states did not rescind their contracts."
...
"Health care fraud experts said they couldn’t think of a single case in recent years in which a plan had been dropped because it was the subject of a Medicaid fraud probe." [emphasis added]

Florida

"Florida health officials continued to contract with WellCare after FBI agents raided the national managed care company’s Tampa headquarters in 2007. That eventually led to criminal charges, and earlier this year, several former WellCare top executives were convicted in a scheme to defraud Florida’s Medicaid and Healthy Kids programs by falsely inflating the amount it spent on care.

"In 2009, WellCare signed a 'deferred prosecution agreement' with the U.S. Attorney’s Office, agreeing to pay $80 million to resolve potential criminal charges in the fraud case. Last year, the company finalized a $137 million settlement to resolve civil fraud allegations. It did not admit wrongdoing in the civil case.

"In February, Florida officials allowed the company to expand its Medicaid services to all 67 counties. Today, WellCare, which has 1.8 million Medicaid members in eight states, is the largest Medicaid managed care plan in Florida."

*********************************
FYI: Michigan Medicaid Managed Care Health Plans

Action Alert from ACCSES : Opposition to policies limiting choice

This is an Action Alert from ACCSES, a national organization representing service providers for people with disabilities.

The federal Centers for Medicare and Medicaid Services are attempting to restrict choice for people living in community settings by proposing rules that claim that specialized services and residential options for people with disabilities in group settings are too institutional. If approved, these rules will limit Medicaid-funded Home and Community Based Services to only those services that meet the CMS ill-defined definition of "community".

The following has many suggestions for action if you disapprove of the CMS rules. Use what seems most appropriate for you and your family member with DD and modify it to fit your situation. There are also links to more information to help you better understand the issues. Also see The DD News Blog on proposed CMS rules .


*************************************************************

September 12, 2013
 
Action Alert
 
Immediate Advocacy Needed in Opposition to a Proposed Regulation that would Restrict or Eliminate the Full Array of Medicaid Home and Community-Based Services and Supports for People with Significant Disabilities
 
There is a crisis facing people with significant disabilities
that needs your immediate attention!

As you know, there is a concerted effort by some factions of the disability community to restrict or eliminate the use of Medicaid Home and Community-Based Services (HCBS) funding for services and supports provided in skill development centers (who they refer to as “sheltered workshops”); eliminate or phase out Section 14(c) of FLSA [Fair Labor Standards Act section that allows employers to hire a worker at less than minimum wage who has a disability for the job being performed and whose earning or productive capacity is impaired by the disability] and restrict use of HCBS funding to support residential community options such as placements in certain residential settings.

We have reviewed public statements by representatives from the Centers for Medicare and Medicaid Services (CMS) and “Special Terms and Conditions” entered into between CMS and New York State. It appears to us that CMS may now be demanding that renewals of HCBS waivers/state plan options [the agreements between the CMS and states that determine how Medicaid funds may be used to provide services to people with disabilities in community settings] include language prohibiting the use of Medicaid HCBS funds for prevocational services provided in skill development centers and restricting funding in certain residential placements that fail to meet the PROPOSED definition of “integrated setting” in a May 3, 2012 Notice of Proposed Rulemaking issued by the Secretary of Health and Human Services.

During the past two years, ACCSES members and the families of the people we serve have opposed restrictions on or the elimination of service options. We have submitted comments to the Secretary of HHS regarding the proposed HCBS regulations; asked members of Congress to submit comments and contact Secretary Sebelius; and have met directly with political appointees and career staff at CMS and various federal agencies and departments. ACCSES has also worked with members in several states to help them negotiate with their Medicaid agencies to ensure continued HCBS funding for the full array of services for individuals with disabilities.  A more extensive background document on the HHS proposed rule can be found here.

Given the most recent developments at CMS described above, there is an urgent need to expand our advocacy efforts. We need your help to pursue three related strategies.

First, if you have not already done so, contact your members of Congress and request that they send a letter to Secretary Sebelius (click here for draft letter) demanding that CMS cease using a proposed regulation under the Medicaid Home and Community-Based Services program as the basis for restricting state flexibility and for eliminating viable service options for people with significant disabilities and urging that the proposed language be modified to allow longstanding, successful program options to continue.

Second, identify any individuals you or your stakeholders know who have political “clout” and ask them to personally contact members of Congress, Secretary Sebelius, and/or The White House.

Third, send this action alert to individuals with disabilities you serve, their family members and friends and relatives, and others, which asks them to send letters to their Members of Congress urging them to send a letter to Secretary Sebelius requesting that CMS modify the language of the proposed regulation to allow community-based programs to continue providing the full array of home and community-based services.

Draft letters for providers and parents:
Letter from providers to parents and allies
For parents to Congress
 
Including a consumer story with a picture will add impact to your message.  The following story elements are ideal for the message.

An individual who benefits from skill development services who:

• experienced job exploration, discovery, job carving, job customization, and/or self-employment;
• tried competitive integrated employment including supported employment more than once and was not satisfied with the outcome;
• became unhappy and possibly regressed behaviorally;
• subsequently was employed at a skill development center;
• likes working at the skill development center; and
• shares with loved ones and others his/her pride in going to work and earning a pay check.

High expectations for people with DD and the danger in imposing unachievable goals

2-year old Ian

This is what happens when I clean off my computer table. I find things I forgot I had written. As often as not, I am glad to get them off the table and into the trash, but this one is about gentle Ian, my younger son who is now 28 years old and has profound physical and intellectual disabilities. I wrote it before a routine Person-centered planning meeting, not because we had big issues to discuss or dramatic changes that needed to be made, but because I was bothered by the expectation that sweet Ian would achieve "outcomes" that were never written for him. They were written to please the system that demands that the people it helps prove their worth by meeting meaningless goals and pie-in-the-sky expectations:

To the Person-centered planning team -

I have some concern about the wording of “outcomes” on Ian’s [2011] PCP. I am sure it is clear to everyone who knows or works with Ian that he needs total care and this is reflected in the description of most of the services he receives. Because of his limitations in communication, there is often no way of knowing for sure why he sometimes “cheeks” his medication or refuses to eat (a rare occurrence) or does not feel like “participating” in some activities [these were mentioned as problems in his PCP].

The statement that “Ian will to the best of his ability, comply with all recommendations and guidelines from the IPOS [Individualized Plan of Service]", for instance, seems to assume abilities that he may not have or that he cannot communicate to others.

Where the PCP says that “Ian will attend appointments as scheduled but will need the help of support team to do this”, it does not convey the severity of his disability. He does not just need “support”, but total involvement by staff to provide him with critical services that he cannot survive without.

Such expressions as “Ian will work with staff at meal times …” does not convey his reliance on the skill and sensitivity of staff to feed him what he needs in a way that gives him the enjoyment that we all expect from mealtimes.

I suspect that this approach to writing the PCP and IPOS comes from a philosophy that emphasizes abilities over disabilities, independence over reliance on others, and an optimistic view that everyone can live, work, and play in the community, just like everyone else. There is nothing wrong with this when it works for particular individuals, but for Ian, it is crucial to recognize the degree of disability that he lives with and not gloss over his dependence on others for his survival.

Ian has a sweet and charming manner in relating to other people, a gift that does not go unrecognized by his family, friends, and the people who work with him. But when the expected “outcomes” written in his PCP far exceed his abilities, it not only sets him up for failure, but the people who provide the services appropriate to his needs, also appear to fail, because Ian cannot meet impossible goals.

When everyone is looking for ways to save money on people like Ian, setting him up for failure could have dire consequences.

Please attach this statement to Ian’s PCP.
 
Fortunately, the people at the meeting were not heavily invested in the methods of the system and the wording was changed. Ian lives in a group home with his brother Danny in Ypsilanti, Michigan.

Affordable Care Act : Michigan health plans and coverage for special needs children

This is from the Detroit Free Press, 9/12/13, on "What Michigan health plans must offer" under the Affordable Care Act: 

• Ambulatory patient services.
• Outpatient care that includes visits to primary care doctors, home health care services and hospice care, though some carriers might limit this to no more than 45 days.Emergency service.
• Visits to the emergency room and ambulance transportation.Hospitalization.
• Surgeries, transplants and care in a skilled nursing facility, though some carriers may limit the latter to no more than 45 days.Maternity and newborn care: Prenatal care, delivery and postnatal care.
• Inpatient and outpatient mental health and substance abuse services: Some carriers may limit this to 20 days each per year.
• Prescription drugs: Includes commonly prescribed drugs and specialty drugs, a class known for its extraordinary high cost per dosage.
• Rehabilitative and habilitative services and devices: Allows 30 visits per year for physical therapy, occupational therapy or chiropractor services, 30 visits for speech therapy and 30 visits for cardiac or pulmonary rehab.
• Laboratory services: X-rays, CT scans and breast cancer diagnosis tests.
• Preventive and wellness services: Chronic disease management and immunizations.
• Pediatric services: Oral and vision care and more.

[Source: Detroit Free Press research]

****************************

For special needs children, the Catalyst Center has published a document called "The Affordable Care Act - A side-by-side comparison of major provisions and the implications for children and youth with special health care needs from the Catalyst Center". The center is "a national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs (CYSHCN)". This publication gives a detailed description of what is required by the ACA, the provisions that are already in effect, soon to be implemented provisions, and the implications for children with special needs.

Delaware: Micki Edelsohn builds homes for life

Micki Edelsohn has built 25 group homes in Delaware for people with developmental disabilities, but she is worried about the direction of the disability movement. In testimony before the Delaware Joint Finance Committee on February 21, 2013 she said this:

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement. 


In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe.
 The second document is the Olmstead decision on determining the placement of a person with an intellectual and developmental disability. In short, this document mandates that a person be placed in “the least restrictive most appropriate setting for each individual.”

Unfortunately many, even in the disability community, are now using these laws and definitions and advocating for changes without considering “capacity”. They are gravitating towards a “one size fits all” approach for a population that is most vulnerable. The reality is that the intellectual capacity of those I advocate and care for range from those who have severe limitations to those who thrive in competitive employment, drive a car, may marry and, very appropriately, self advocate. One size does not fit this diverse population.

Let us NOT take away options but build on those that work. - See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.PSFY4HJZ.dpuf

...Let us NOT take away options but build on those that work.

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the placement of a person with an intellectual and developmental disability. In short, this document mandates that a person be placed in “the least restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using these laws and definitions and advocating for changes without considering “capacity”. They are gravitating towards a “one size fits all” approach for a population that is most vulnerable. The reality is that the intellectual capacity of those I advocate and care for range from those who have severe limitations to those who thrive in competitive employment, drive a car, may marry and, very appropriately, self advocate. One size does not fit this diverse population.
- See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe. - See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe. - See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe. - See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe. - See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the placement of a person with an intellectual and developmental disability. In short, this document mandates that a person be placed in “the least restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using these laws and definitions and advocating for changes without considering “capacity”. They are gravitating towards a “one size fits all” approach for a population that is most vulnerable. The reality is that the intellectual capacity of those I advocate and care for range from those who have severe limitations to those who thrive in competitive employment, drive a car, may marry and, very appropriately, self advocate. One size does not fit this diverse population.
- See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the placement of a person with an intellectual and developmental disability. In short, this document mandates that a person be placed in “the least restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using these laws and definitions and advocating for changes without considering “capacity”. They are gravitating towards a “one size fits all” approach for a population that is most vulnerable. The reality is that the intellectual capacity of those I advocate and care for range from those who have severe limitations to those who thrive in competitive employment, drive a car, may marry and, very appropriately, self advocate. One size does not fit this diverse population.
- See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the placement of a person with an intellectual and developmental disability. In short, this document mandates that a person be placed in “the least restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using these laws and definitions and advocating for changes without considering “capacity”. They are gravitating towards a “one size fits all” approach for a population that is most vulnerable. The reality is that the intellectual capacity of those I advocate and care for range from those who have severe limitations to those who thrive in competitive employment, drive a car, may marry and, very appropriately, self advocate. One size does not fit this diverse population.
- See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the placement of a person with an intellectual and developmental disability. In short, this document mandates that a person be placed in “the least restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using these laws and definitions and advocating for changes without considering “capacity”. They are gravitating towards a “one size fits all” approach for a population that is most vulnerable. The reality is that the intellectual capacity of those I advocate and care for range from those who have severe limitations to those who thrive in competitive employment, drive a car, may marry and, very appropriately, self advocate. One size does not fit this diverse population.
- See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf

In 2011, President Obama appointed me to the President’s Committee for People with Intellectual Disabilities. This has given me the opportunity to see how things are trending at both a national and state level, and I must tell you I am deeply concerned about the direction of the disability movement.
In addition to my testimony, which you have been given, I have attached two extremely important documents, which I hope you will refer to often when thinking about the population for which I am advocating. One is the definition of an intellectual and developmental disability as Federally codified in the Developmental Disability Assistance and Bill of Rights. The definition is very exact and as you read it I ask you to think about the numerous ways a person with an intellectual and developmental disability can be affected, from mild to severe.
The second document is the Olmstead decision on determining the placement of a person with an intellectual and developmental disability. In short, this document mandates that a person be placed in “the least restrictive most appropriate setting for each individual.”
Unfortunately many, even in the disability community, are now using these laws and definitions and advocating for changes without considering “capacity”. They are gravitating towards a “one size fits all” approach for a population that is most vulnerable. The reality is that the intellectual capacity of those I advocate and care for range from those who have severe limitations to those who thrive in competitive employment, drive a car, may marry and, very appropriately, self advocate. One size does not fit this diverse population.
- See more at: http://www.familiesspeakingup.com/2013/03/07/testimony-2-21-13-micki-edelsohn-for-families-speaking-up/#sthash.b7pmwWH1.dpuf