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 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.
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
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 .
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.
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.
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.
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
David Kassel at The Real Choices in Care Blog has a lot to say about the extreme ideology of some disability advocates who oppose all congregate care for people with developmental disabilities. In his post "How Ideology trumps logic in the care of the developmentally disabled", 8/20/13, he observes that "according to the ideology, any care setting for the developmentally disabled that serves more than two or three disabled people at one time is now considered to be 'segregated' because it separates those people even momentarily from the 'community.' No consideration is given here to the consequences of basing policy on this ideology or what the recipients or their families want or think. " He goes on to note that for these advocates, closing developmental centers all over the country over the objections of families and guardians is not enough: "Farming programs for the developmentally disabled must be shut down. Sheltered workshops must be eliminated. Nursing homes that provide expert care for the disabled are seen as no different than nursing homes that do not have that expertise. And group homes that house more than three people must be closed. They are all potential congregate care settings and therefore too 'institutional' for the good of the people who participate in them or are served by them." The ideology of these groups has permeated government agencies at all levels, including the Centers for Medicare and Medicaid Services and the U.S. Department of Justice. Only the assertion that "segregation is discrimination" is taken into account, often without evidence that any individual has actually been discriminated against (either forced into or prohibited from participating in a program or activity against the individual's will based on the person's status as a disabled person). Often the only criteria sited for establishing discrimination is that the person associates or lives with other people who are disabled. This is an ideology that unnecessarily causes suffering for both the individuals in need of specialized care and their families. Kassel includes a statement in his blog post from a father whose daughter lives at a specialized nursing facility in Massachusetts. He and other families lived in fear for years that their loved ones with extensive medical needs would be removed from the care they needed because of a lawsuit that has finally been resolved: "The (Seven Hills Center) families spent hundreds of hours in meetings and seeking out legislators to attempt to find someone to stand up for their children. Several of the parents sought medical help due to the increased anxiety and stress from the case. When their children died due to the natural course of their many medical problems, we all mourned together. None of us would mourn for the self-righteous extremist opponents of congregate care who imposed this hell on us. Not one of those advocates has shown a single iota of concern for the well-being of our children, who are among the neediest individuals in this world. If any one of them has a conscience, they should be deeply ashamed. We have never heard the slightest word of apology from them."
In the world in which many of these disability advocates live, there is no need to make distinctions between good care and bad, between differences in people that make congregate care not only necessary but desirable for some, but not for others, or to consider the potential harm in the policies they promote. All they know is that they know best and they are right. What a wonderful fantasy that must be.
In November 2007, a man from Bloomfield Hills, Michigan, was accused of raping his 14-year-old autistic daughter based on statements that she allegedly made through facilitated communication. Facilitated communication is a controversial and largely discredited technique that supposedly allows a non-verbal person to communicate through a facilitator who assists the person in typing out messages on a keyboard.
The man's wife was accused of knowing about the abuse but not doing anything about it. The girl's brother who has Asperger's Syndrome was questioned by the police without a lawyer or guardian present and was told by his interrogator that there was incriminating evidence that proved that the rapes had taken place and that implicated the brother in the abuse. The story told him by the police turned out to be entirely fabricated. The man spent 80 days in jail, his wife was placed on an electronic tether, and both children were placed in foster care. The case was eventually dismissed; there was no physical evidence that a rape had ever occurred and the facilitator was shown to be the author of the allegations, not the autistic girl. The parents sued the school district, the police, the prosecutors, and the Michigan Department of Human Services. The police settled the suit for $1.8 million, while the others involved claimed governmental immunity. According to a report in the Detroit Free Press, "West Bloomfield parents allowed to sue prosecutors over faulty sex-abuse case" by John Wisely, 8/29/13, an appeals court said "governmental immunity doesn’t shield Oakland County prosecutors, Walled Lake Consolidated Schools officials and staffers from the Michigan Department of Human Services from liability for their actions in the case." The parents' lawsuit claiming that their constitutional rights were violated may now proceed to trial. The case was flawed from the start because of its reliance on evidence from Facilitated Communication. The Judge was especially critical of the prosecutors for allowing the girl's brother to be questioned: "'It was objectively unreasonable for Dean and Carley [the prosecutors] to subject (the brother) to an interview of this type without consent,' the court ruled." The Court also found that Rebecca Robydek, a social worker with the state Department of Human Services who placed the children in foster care, could not claim governmental immunity. The court ruled that “Robydek’s actions are especially troubling in this situation given the multiple documented errors in the facilitated statement used as the sole basis for Robydek’s recommendation.”
