2015 VOR Annual Conference Featured Speakers: Terry Farmer and Lois Sheaffer

VOR is a national organization that supports individuals with intellectual disabilities (IDD) and their families by advocating for a full range of residential and service options to meet their diverse needs. VOR will be holding its Annual Conference on Sunday, June 7, 2015 in Washington, D.C. See you there!
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(from the VOR Weekly Update)

Terry R. Farmer

Terry R. Farmer, the CEO of ACCSESS, a national organization representing “more than 1,200 disability service providers across the country as the Voice of Disability Service Providers,” will be a featured speaker at VOR’s Annual Conference on Sunday, June 7, 2015 in Washington, D.C.

Terry will speak on “National Disability Policy – Initiatives Impacting Employment Options for Individuals with Significant Disabilities.”

Emerging public policy is affecting the delivery of services and supports currently available to individuals with significant disabilities.  Federal and state programs and community providers are transforming their systems and operations in response to new laws, regulations and administrative actions.  Conference participants will learn how these forces are affecting employment programs for individuals with significant disabilities, and discuss strategies for engaging policy makers in a rapidly changing environment.

About Terry: Throughout his career, Terry has been affiliated with several state and national professional and trade organizations and has been recognized for his academic work and service to the field. His work experience includes direct service provision, behavior analysis (State of Florida Certified), program administration, policy analysis and executive level leadership in the fields of disabilities and human services.  He has administered programs of long-term services and supports, diagnosis and evaluation, community placement of people with severe developmental disabilities and mental illness, and issue advocacy. From 1991-2008, Terry served as the President/CEO of the Florida Association of Rehabilitation Facilities. In 2009, he co-founded Combat Injuries Project, Inc. with a group of veterans, professionals and business executives to serve veterans, especially those with service-connected disabilities, and their families.  He was appointed ACCSES CEO in April, 2011. 

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Lois Sheaffer

Lois Sheaffer will be presenting “Everyone Needs a little REST!” at VOR’s 2015 Annual Conference on Sunday, June 7, 2015 in Washington, D.C.
 
Ms. Sheaffer is the Founder, National Director and Master Trainer of Respite Education & Support Tools (REST). She also serves as the Director of Government Relations and Community Support for Marklund, a Medicaid Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) in Illinois.
 
REST is a nationally-recognized train-the-trainer program that equips volunteers with the skills needed to support caregivers in their community through respite.
 
Ms. Sheaffer, a Certified Therapeutic Recreation Specialist, began her career in respite working with individuals who have special needs. As the coordinator of an in-home community respite program she hired, trained, and matched workers with families. She later became active in the Illinois Respite Coalition and served as President of the Coalition for five years. She continues to stay well connected with ARCH [Access to Respite Care and Help] and the National Respite Coalition.
 
Most recently, using the national respite guidelines, she developed REST, a respite training program for volunteers. 

In addition, Ms. Sheaffer, has worked in a variety of settings, including geriatrics, skilled care, and pediatric residential facilities for children and adults with Developmental Disabilities. Lois is a registered lobbyist and currently serves as the Director of Government Relations and Community Support for Marklund.
 
Please plan to attend VOR's Annual Conference and hear Ms. Sheaffer's presentation. Won't you join us? Registration is now open.
 
For complete conference details and a registration form, visit VOR’s Events link on our website.

Bringing Home the Bacon

Is there such a thing as a multi-Billion dollar NONprofit? Yes, there is, and one of them is The ARC, the country's largest advocacy organization for people with developmental disabilities. 

An article in Fusion, a newsletter from the national ARC for September 29, 2014, covers a recent report from the National Center on Charitable Statistics of the Urban Institute. Based on a year's worth of data compiled from IRS 990 forms (the forms that most nonprofit organizations file annually with the IRS),  The ARC and its chapters throughout the United States have brought in $4.02 Billion in Gross Receipts, "…including $3.83 Billion in Total Revenue, $2.76 Billion in Program Service Revenue, $989 Million in Contributions & Grants (includes Government Grants) and $20 Million in Investment Income."

"Of the Total Contributions, Gifts and Grants, $145 Million is from individuals, foundations and corporations while $847 Million is from government…"

That's a lot of money! Of The ARC's total revenues of $3.83 Billion, $847 Million or 22% came from government, and  $145 Million or 3.8% from individual donations.

One can learn a lot about an organization from its IRS 990 forms, including its revenues, expenditures, and how much it pays its highest paid employees. Guidestar is a good place to start looking for information on nonprofit organizations. Registration is free. Here is Guidestar's Frequently Asked Questions about form 990.

Read the full article on The ARC's finances here.

The Revolving Door between Advocacy Organizations and Government

I found this in an email newsletter from ACCSES, a national disability provider organization. 

Careful! You might get dizzy. Ms. Barkoff has gone from staff attorney at the Bazelon Center for Mental Health Law, to the US Department of Justice, with forays into the Centers for Medicare and Medicaid Services and the Department of Labor, and back again to the Bazelon Center:

Alison Barkoff Returns to Bazelon as Advocacy Director

Ms. Barkoff was a staff attorney with the Bazelon Center [for Mental Health Law] from 2005 to 2010, before joining the U.S. Department of Justice (DOJ), where she served for four years as Special Counsel for Olmstead Enforcement in the Civil Rights Division. As Director of Advocacy, Ms. Barkoff will help lead the Bazelon Center's policy and litigation work, as well as work on organizational activities such as fundraising. While at the DOJ, Ms. Barkoff led the Civil Right Division's efforts to enforce the rights of individuals with disabilities to live, work, and receive services in the community. Under her leadership, the Division issued its first guidance based on the U.S. Supreme Court's landmark Olmstead disability-rights ruling and was actively involved in Olmstead litigation across the country, including several cases culminating in statewide system reform settlement agreements. She also worked with Centers for Medicare and Medicaid Services [CMS, the federal agency that regulates Medicare and Medicaid] on finalizing rules governing Medicaid-funded community-based services and with the Department of Labor on implementation of its new home care rule in Medicaid-funded disability service systems.

VOR: Refusing to redefine individual choice

This is from featured news on the National Autism Network website:
  
Meet VOR: An organization that unites by refusing to redefine individual choice

Mar 04 2014

By Tamie Hopp, VOR Director of Government Relations & Advocacy

I am delighted to have this opportunity to introduce you to VOR, an organization that is really like none other.

VOR is a national, nonprofit organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

We are the only national advocacy organization that has not redefined terms that other disability advocates have hijacked, like “choice” and “community.” 

For 30 years, VOR has remained true to the families we represent by putting their seasoned insights and perspectives first. To us and them, “choice” really means choice. Our advocacy is driven and guided by an undeniable truth: Individuals and their families know best.

To get to know VOR even better, we are offering a complimentary e-subscription to our publications through June 2015, no strings attached, including our weekly VOR E-News Update and our newsletter, The Voice, published three times a year. Just send your email address to info@vor.net with your request. Your email will never be shared or sold.

You will find VOR unique and refreshing in this day and age of advocacy. We respect individual differences, and reject “broad brush” policies that apply to most individuals with disabilities, but not all.  In our view, such an “all or nothing” approach is not person-centered or individualized and imposes an ideology on the most disabled members of our society and places them at risk.

VOR’s advocacy – our walk to support our talk – is carried out at the state and federal levels by an army of members and volunteers, the vast majority of whom have family members with profound cognitive disabilities.

In state houses, court rooms, Congress and the media, we are doing all we can to help change the conversation away from ideological notions of what is best for all people with developmental disabilities, to what each individual needs.  We challenge laws, seek reforms and help families.

In short, VOR is doing all we can to answer what “Autism Daddy” says is the question many parents of autistic children and adults are afraid to ask, “Where Will He Live When We're Gone?”

VOR demands realistic answers to this question by working to ensure that the system is responsive to all needs, and working in coalition to expand housing and vocational options and challenging efforts at all levels, including our federal government, to eliminate specialized residential, vocation, and support services.

The need is significant. 3.5 million people with I/DD and autism are living with family caregivers (many who are elderly), there have been less than a quarter million out-of‐home residential opportunities funded in nearly 20 years,  and 268,000 Americans with I/DD are on waiting lists for services.

Does it make sense to eliminate specialized service options for people with profound needs because of someone else’s notion of “inclusion” and “community?”

VOR’s vision of the world puts individuals and their families in the driver’s seat, not federally-funded advocates that attempt to speak for you and your family.

VOR is 100% privately –funded, supported entirely by our members, primarily families like you.

We invite you to learn more about VOR at www.vor.net; and don’t forget out our complimentary subscription offer (to get signed up, send your request to info@vor.net).

The more advocates we have speaking up in support of individual rights, family rights and common sense, the more successful we will be.

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About the National Autism Network:

The National Autism Network is the largest online resource for the autism community providing a social network, nationwide provider directory, events calendar, discussion forums, autism news, expert written content and thousands of resources. Our mission is to unite and empower parents, providers, family members and individuals on the autism spectrum by providing a growing community rich in knowledge and expertise with a common goal of working together to make a difference in the lives of those affected by autism. We are all in this together as one community! 

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

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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.

Words to the Wise: VOR Annual Meeting in D.C.

I am attending the VOR Annual Conference in Washington, D.C. this weekend.  VOR is a national non-profit organization that advocates for a full range of service and residential options for people with developmental and intellectual disabilities. 95% of VOR's funding comes from families and family organizations and no funding from the government. Unlike other organizations that get most of their money from government grants, VOR is a truly independent voice for people with severe and profound disabilities who cannot  speak for themselves.

Here are a few wise words that I picked up from presentations at today's meeting:

"Human beings are perhaps never more frightening than when they are convinced beyond doubt that they are right." Sir Laurens vander Post (1906-1996) South African author.

What's driving this Madness? [over the top assertions that every person with DD can make their own decisions, live safely in the community, work at competitive employment, and be fully integrated into the all aspects of community life]...

"There is, of course, a great deal of utopian nonsense involved. Everyone likes to think they are being broadminded and liberal when in fact they are living inside their own fantasies of what they think all disabled people want or should want instead of listening to disabled people.

"The do-gooders always feel they know what is best for you and they seem to have taken over DOJ [U.S. Department of Justice]..." (anonymous attorney)

"Love the truth and hate the lie" and "Trust the data." Ralph Kennedy, panelist on Standardizing Quality Across all Settings

People on SSI can't afford housing

This is from a press release from the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD):

The Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force have released a study, Priced Out in 2012, which demonstrates that the national average rent for a modestly priced one-bedroom apartment
is greater than the entire Supplemental Security Income (SSI) payment of a person with a disability. The study sheds light on the serious problems experienced by our nation’s most vulnerable citizens – extremely low-income people with significant and long-term disabilities.

The Study – Priced Out in 2012 – compares the monthly SSI payments [Supplemental Security Income is provided to people who have a very low or otherwise non-existent income and are not able to work] received by more than 4.8 million non-elderly Americans with disabilities to the Fair Market Rents for modest efficiency and one-bedroom apartments in housing markets across the country. The Fair Market Rent for rental housing is determined by the U.S. Department of Housing and Urban Development (HUD). According to HUD, rent is affordable when it is no more than 30 percent of income. SSI is a federal program that provides income to people with significant and long-term disabilities who are unable to work and have no other source of income and virtually no assets. Priced Out in 2012 reveals that as a national average, people with disabilities receiving SSI needed to pay 104 percent of their income to rent a one-bedroom unit priced at the Fair Market Rent.

“Nowhere in the United States can people with disabilities receiving SSI afford a safe, decent place to live,” stated Kevin Martone, Executive Director for TAC. “Yet taxpayer resources are spent exponentially on the costs associated with institutionalization and homelessness when more cost effective, proven solutions exist. I encourage our policy makers to consider the magnitude of this crisis and work in a bipartisan fashion to address this form of discrimination against our most vulnerable citizens.”...

The press release goes on to point out that in the midst of a housing crisis, the President's Fiscal Year 2014 budget cuts $40 million from housing subsidies that would allow states to target rental assistance to people moving out of institutional settings and homelessness.

This is a serious crisis, but I take issue with using the housing crisis for people who depend on SSI to further the cause of deinstitutionalization and opposition to congregate care in general. For people with severe developmental disabilities, the expense of housing is only part of the equation for providing appropriate services in all settings whether they are in community homes or institutions.  For my own sons, the cost of care and specialized services is far greater than the cost of housing. Moving people from institutional settings or congregate care does not necessarily save money overall and when it is done against the will of the people affected and their families or it results in a reduction of services and risks to safety, it can be deadly.

But yes, this is a real crisis for the many people who need rent subsidies to help them live a more independent, dignified, and fulfilling life.

Here is the link to the full report.

Excerpts from letter to HUD from the National Association of the Deaf, 4/25/13

[Read the full letter here.]

Secretary Shaun Donovan

U.S. Department of Housing and Urban Development

451 7th Street, SW

Washington, DC 20410

Dear Secretary Donovan:

The National Association of the Deaf (NAD) is contacting you in your capacity as the head of the United States Department of Housing and Urban Development to raise our heightened concerns about the egregious state of housing for deaf and hard of hearing individuals in the United States....

In a nutshell, your agency, HUD, is forcing deaf and hard of hearing individuals to only live according to an ideological vision of forced integration. The tragic irony is that such an ideology has punished deaf and hard of hearing individuals seeking a higher quality of life and a safer place to live and has actually resulted in the forced isolation of individuals who are deaf and hard of hearing...

In essence, most deaf and hard of hearing people who reside in public or subsidized housing live in fire-traps because the smoke alarms do not alert them visually or in other non-audible ways. Even if they do have a stand-alone smoke alarm that visually alert them, this alarm is typically not connected to the other smoke alarms in a housing complex. As a result, a deaf resident would only know of a fire in a complex if the fire was so close to their own unit, at which point, it is probably too late for the deaf resident to leave the complex.

Moreover, due to the unique communication needs of deaf and hard of hearing people, many of them exist in isolation in inaccessible housing where there is no one else to communicate with in sign language. These residents therefore experience extreme loneliness and depression, and their quality of life is deplorable.

Yet, HUD has the atrocious gall to intervene in a housing project that was designed to be a place of complete accessibility for everyone including deaf and hard of hearing people. Instead of encouraging a paragon of accessibility, HUD is forcing deaf and hard of hearing residents to live in isolation and in fire-traps where they are not only without practical fire alarms that alert them, but without access to even the most basic communications access to the community in which they live...

Specifically, we are extremely concerned that HUD is currently pressuring the State of Arizona to sign a “voluntary” compliance agreement that would prohibit an award winning housing project called Apache ASL Trails from giving preference to its state-of-the-art accessible housing units first to individuals who need those accessibility features and services provided at Apache ASL Trails once the total number of residents with disabilities exceeds HUD’s arbitrary quota of 25%.  There is no statute or regulation that mandates any such 25% quota, and the imposition of any such quota is an ideological principle that ignores the reality of housing needs for many people with disabilities including deaf and hard of hearing individuals. [emphasis added] There is, however, law that requires that these individuals be given a full and equal opportunity to live in accessible housing that meets their needs.

While many of the residents at Apache ASL Trails are deaf and chose to live there because they sought out the desperately needed accessibility features of this unique complex, not all the residents are deaf.  Apache ASL Trails opened in 2011 and there has never been a discrimination complaint filed against them nor have any qualified applicants been rejected by Apache ASL Trails.  You do not need to be deaf to live at Apache ASL Trails...

The NAD believes that true housing equality means that individuals with a disability must be granted the freedom to choose to live in and benefit from housing that is equal to the housing available to others.  We urge you to immediately halt advancing arbitrary maximum quotas and to cease denying preferences to individuals who need the accessibility features of a unit and wish to live in that unit.  Please feel free to contact us if you have any questions or need additional information.  We look forward to your response.

Sincerely,

Christopher D. Wagner     

President                        
Howard A. Rosenblum  

Chief Executive Officer

Co-signed by 75 organizations for people who are deaf or hard of hearing

NCD Report on Deinstitutionalizatioin : Part 4

The National Council on Disability met today for its quarterly meeting in Washington, D.C. Anyone calling in to the NCD can give comments to the Council. Check on their schedule of meetings and agenda. Some public comment periods are open only for specified topics and others are unrestricted. 

These comments are about the NCD's Report on Deinstitutionalization and the NCD's failure to acknowledge or explain opposing views.

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Comments to the National Council on Disability
April 23, 2013

Jill Barker
Ann Arbor, Michigan
The DD News Blog

You have heard from individuals who opposed the NCD report on "Deinstitutionalization: Unfinished Business". I think that the NCD needs to do more to include opposing views on this and other subjects from people with severe developmental disabilities and their families:

• I have two adult sons with profound intellectual and developmental disabilities. My sons and people like them appear to be invisible to the NCD. When the NCD redefines an institution as any setting with 4 or more individuals who did not choose to live together, it does not acknowledge that there are people who cannot make such choices. My husband and I, as our sons' co-guardians, make these choices for them because both our boys are unable to exercise their rights on their own behalf. We make these choices based on what we know to be their preferences and needs and not without considerable thought to how their lives will be affected.
• The NCD report on deinstitutionalization makes no attempt to assess how the recommended policies will affect people with severe disabilities. How many 10's of thousands of people will be displaced from their homes? How disruptive will policies be to the lives of people with severe disabilities and their families when they lead to the elimination of services and settings that are not "fully integrated" (as defined by the NCD)? In writing the report, no one bothered to ask. In interviews with individuals with disabilities, only those who reinforced the views of the NCD were included in the report. No attempt was made to include opposing viewpoints or explain the reasons for them. 
• Who stands to benefit from policies that push the ideology of full inclusion to its illogical extreme? Such policies provide cover for states that seek to cut costs while being heralded as promoting freedom for individuals with disabilities. How many people will be "liberated" from services and residential options they need to survive? By promoting residences of fewer than 6 people, in Michigan at least, this will relieve the State of having to license and regulate living situations. In closing larger facilities, there is no guarantee that services will be financially sustainable for people with the most severe disabilities or that savings will go to expand community services.

By focusing in this report so narrowly on eliminating options for people with severe disabilities, the NCD has missed an opportunity to call attention to the problems in community care and solutions that include a broader spectrum of ideas and opinions.

NCD Report on Deinstitutionalization: Part 2

“Two Key Truths….”

In its report on Deinstitutionalization, the National Council on Disability states that "two key truths” emerge as the underpinnings for the Americans with Disabilities Act, the 1999 Olmstead Supreme Court decision, and for the rationale to close institutions:

1. People with ID/DD [Intellectual and Developmental Disabilities] have a legal right to live in the community and to receive necessary services and supports. 
2. Life in the community provides opportunities for dignity, freedom, choice, and a sense of belonging that are not possible in an institutional environment.

The first “truth” is only half true. 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.

In dismissing the idea that anyone needs an institutional placement, the NCD report (page 56) says that, “Some of those who oppose institutional closure claim that some people with ID/DD are so severely disabled that they cannot handle or benefit from community living and that institutions are the most integrated setting appropriate to their needs.” The whole truth is that those who oppose institutional closure include the Supreme Court Justices who stated in the Olmstead decision:

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187.

And

“As already observed by the majority, the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person — recognizing on a case-by-case basis, that setting may be an institution" [quoting VOR’s Amici Curiae brief]

The second “truth”, that opportunities for dignity, freedom, choice, and a sense of belonging are not possible in an institutional environment, is an assertion that cannot be proved or disproved. It is based on the subjective experience of a wide range of individuals, many of whom are unable to comprehend such abstractions or express their opinion about them.

The underpinnings of the NCD interpretation of the Americans with Disabilities Act and the Olmstead decision are fragile to non-existent as is their rationale for wanting to close all institutions.

NCD Report on Deinstitutionalization: Part 1

From the NCD Web site: The National Council on Disability (NCD) is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Presidential appointees, an Executive Director appointed by the Chairman, and twelve, full-time professional staff.

The National Council on Disability issued a report in October 2012 called "Deinstitutionalization: Unfinished Business". The report is a companion paper to an NCD Deinstitutionalization Toolkit designed to provide a how-to manual for all those interested in institutional closures.

What's wrong with this picture? The National Council on Disability is a federally funded agency that is using federal money to mount a campaign to eliminate another federal program that NCD members don't like. 

Intermediate Care Facilities for people with developmental disabilities (ICF/DD) are funded and regulated by Medicaid. They are considered to be institutions under Medicaid law, along with nursing homes, mental hospitals, and other hospital settings. Some ICFs are larger facilities, but they may be as small as 4-bed state-operated group  homes. They house some of the most severely disabled adults, including people who are medically fragile or have behaviors that make them very difficult to care for in community settings.  ICFs/DD come with an array of services that are often not routinely available elsewhere (for instance, nursing services, dental care, and other specialities). Funding covers total care and is not fragmented the way it is in most community settings.

Residents of institutions have protections against abuse, neglect, and exploitation as well as the right to continue to receive institutional care, even if it conflicts with the ideology of advocacy organizations that don't want them to have this choice.

Although the NCD report emphasizes closing larger facilities, it arbitrarily (and without any specific authority to do so) redefines the word "institution" to include any setting that is "a facility of four or more people who did not choose to live together"(emphasis added). It appears the NCD is laying the groundwork for the elimination of a broad spectrum of living situations currently available to the DD population.

By calling for the closure of all larger facilities, the NCD misinforms the public on the intent of the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision with regard to institutional care for people with severe disabilities. It places at risk people who are the most vulnerable and difficult to care for. 

More Information:

Link to the NCD report.

My comments on the NCD report.

Comments from VOR, a national organization that supports a full array of residential and service options for people with ID/DD.

Comments from a Massachusetts blog, "The National Council on Disability can’t be serious"

Send comments to the National Council on Disabilities at PublicComment@ncd.gov

Because the NCD is a federal agency with oversight by the U.S. Congress, send copies of you comments to President Obama, your U.S. Senators (Carl Levin and Debbie Stabenow in Michigan) and your U.S. Representative (find here)

Vulnerable seniors at risk from paid home caregivers

The VOR Weekly News Update from 9/14/12 reports on a national study: Dangerous Caregivers - Agencies place unqualified, possibly criminal caregivers in homes of vulnerable seniors


According to the Northwestern University News Center, July 10, 2012, "A troubling new national study finds many agencies recruit random strangers off Craigslist and place them in the homes of vulnerable elderly people with dementia, don’t do national criminal background checks or drug testing, lie about testing the qualifications of caregivers and don’t require any experience or provide real training."


The study was published in the July 13 issue of the Journal of American Geriatrics Society.

VOR notes that VOR will encourage the study’s authors to consider a similar study of caregivers for people with intellectual and developmental disabilities.

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Here is more from the Northwestern University News Center article by Maria Paul:

The author of the study Lee Lindquist, M.D., an associate professor of medicine at Northwestern University Feinberg School of Medicine and a physician at Northwestern Memorial Hospital is quoted in the article:

“It’s a cauldron of potentially serious problems that could really hurt the senior,” Lindquist said. “These agencies are a largely unregulated industry that is growing rapidly with high need as our population ages. This is big business with potentially large profit margins and lots of people are jumping into it.”

Some of the findings from the study:

• Only 55 percent of the agencies did a federal background check.
• Only one-third of agencies interviewed said they did drug testing - "'Considering that seniors often take pain medications, including narcotics, this is risky,' Lindquist said. 'Some of the paid caregivers may be illicit drug users and could easily use or steal the seniors’ drugs to support their own habits.'"
• Few agencies (only one-third) test for caregiver skill competency - "A common method of assessing skill competencies was 'client feedback,' which was explained as expecting the senior or family member to alert the agency that their caregiver was doing a skill incorrectly."
• Inconsistent supervision of the caregiver.

“'The public should demand higher standards, but in the short term, seniors need to be aware what explicitly to look for when hiring a paid caregiver through an agency,' Lindquist said."

Dr. Lindquist's advice on hiring caregivers:

10 QUESTIONS TO ASK BEFORE HIRING A CAREGIVER

1. How do you recruit caregivers, and what are your hiring requirements?
2. What types of screenings are performed on caregivers before you hire them? Criminal background check—federal or state? Drug screening? Other?
3. Are they certified in CPR or do they have any health-related training?
4. Are the caregivers insured and bonded through your agency?
5. What competencies are expected of the caregiver you send to the home? (These could include lifting and transfers, homemaking skills, personal care skills such as bathing, dressing, toileting, training in behavioral management and cognitive support.)
6. How do you assess what the caregiver is capable of doing?
7. What is your policy on providing a substitute caregiver if a regular caregiver cannot provide the contracted services?
8. If there is dissatisfaction with a particular caregiver, will a substitute be provided?
9. Does the agency provide a supervisor to evaluate the quality of home care on a regular basis? How frequently?
10. Does supervision occur over the telephone, through progress reports or in-person at the home of the older adult?

Links to comments on the CMS proposed regulations (CMS-2249-P2) for Medicaid waivers

It is always illuminating to read comments on proposed policies for people with disabilities from people and organizations with differing perspectives, agendas, and interests. Here is the link for finding comments on the proposed regulations on Home and Community Based Services waivers from the Centers for Medicare and Medicaid Services  (CMS-2249-P2). To read the comments, click on the blue highlighted text that begins with the abbreviation for the state and the name or organization of the commenter. Sometimes the comments appear in full on the opened page, but usually they are attached, either as a Word document or a PDF file. Look for "View Attachments" and click on "DOC" or "PDF" to open.

HCBS Medicaid waivers have been around for a long time and are used to pay for community services as an alternative to services provided in institutions. Medicaid law identifies institutions as nursing homes, Intermediate Care Facilities for the Mentally Retarded (ICF/MR), hospitals for mental diseases and other hospital settings. In MIchigan, the Habilitation Supports Waiver (HSW) is the Medicaid waiver for people with developmental disabilities. It is currently used to pay for a wide range of services and settings from supported living services provided in the disabled individual's own or family's home to state-licensed community-based facilities that provide more intensive care and support. It also pays for community living services that enable an individual to fully participate in community activities and services, as well as specialized day and skill training programs in accordance with the individual's plan of services developed through a person-centered planning process.

If these proposed regulations were to become final as they are now written, they would make it more difficult to use Medicaid waiver funding to pay for settings that are deemed to have "qualities of an institutional setting" as defined by the regulations and ultimately the Secretary of the U.S. Department of Health and Human Services. This would undermine and lead to the likely closure of many specialized programs that have been designed by family and community organizations that are person-centered, consumer-driven and based on choice. Also threatened would be state-licensed facilities and other programs operated by Community Mental Health agencies or CMH contracted providers.

Here are links to comments that are of special interest to people living in Michigan:

• Comments from the Michigan Department of Community Health
• Comments from Michigan Protection and Advocacy Services (MPAS)
• Comments from the ARC Michigan

The national organization for protection and advocacy agencies, the National Disability Rights Network (NDRN), has also commented on the proposed regulations. Many national and statewide organizations have submitted comments that agree with the comments from NDRN.

Here is an especially poignant plea from 86-year old parents who have finally found the right place for their son and fear it might be threatened by these regulations.

Disabled adults with nothing to do

This is an article from the VOR Weekly Update:

Founded in 1983, VOR is a national 501(c)(3) organization governed by a volunteer board of directors and funded solely by dues and donations. VOR receives no government support.

Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. The organization supports the expansion of quality community-based service options and opposes the elimination of the ICFs/MR (institutional) option.

VOR represents primarily individuals with  intellectual disabilities and their families/guardians. VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and desires of the family and guardians. 

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Many Adults With Disabilities Do Nothing All Day


A new study concludes that people with developmental disabilities who are inactive each day are also more likely to have severe disabilities, receive fewer resources, and have parents who were less able to provide care. In these cases, a large percentage of siblings also reported having poorer mental and physical health than other siblings as well as weak relationships with their brother or sister, calling into question their viability as long-term caregivers.

Unfortunately, the study’s findings did not consider the impact of residence on level of daily activity. The study included individuals in all settings with the majority (88.9%) living in family homes, group homes, and other small settings, and the remainder in licensed facilities (11.1%). 

VOR feels that the detrimental impact on aging caregivers – parents or siblings – is predictable. People with severe developmental disabilities take more care, more time and energy and over time such caregiving takes its toll. Caregivers have less energy and motivation to search for more services, especially considering the many obstacles to finding services that are often in place. It is our experience that many local agencies do not tell families all that is available or families are discouraged from asking for services due to lack of funding and long waiting lists.

Many years ago, author Fern Kupfer addressed this very real concern:

“No politician is going to say he is against caring for the handicapped, but he can talk in sanctimonious terms about efforts to preserve the family unit, about families remaining independent and self-sufficient. Translated, this means, ‘You got your troubles, I got mine.’” (Kupfer, F., (December 8, 1997). My Turn: Home Is Not For Everyone. Newsweek).

In response to the "Do Nothing" study, one VOR Board Member remarked, “I hope this study is not interpreted as a need to better educate parents to become better caretakers, rather than actually providing services.”

Read related article here from the Website disabilityscoop.

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The study by Julie Lounds Taylor and Robert M. Hodapp, "Doing Nothing: Adults With Disabilities With No Daily Activities and Their Siblings",  is published in AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2012, Vol. 117, No. 1, 67–79

National Council on Disability invites you to listen in on meeting

The National Council on Disability (NCD), according to its Website, is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Senate-confirmed Presidential appointees, an Executive Director appointed by the Chairman, and eleven, full-time professional staff.

The Members of the NCD will meet by phone on Wednesday, February 1, 2012, 3:00 - 4:00 PM, ET. Listen in and find out more about the NCD and whether the organization represents your interests.

NCD staff will participate in the call from the NCD office at 1331 F Street, NW, Suite 850, Washington, DC 20004. Interested parties may join the phone line in a listening-only capacity using the following call-in number: 1-888-466-4440. If asked, the conference call's leader's name is Aaron Bishop.

The Council will meet by phone for deliberations regarding disability forums.

CONTACT PERSON FOR MORE INFORMATION: Anne Sommers, NCD, 1331 F Street, NW, Suite 850, Washington, DC 20004; 202-272-2004 (V), 202-272-2074 (TTY).

Executive Director: Aaron Bishop

National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

202-272-2004 Voice

202-272-2074 TTY

202-272-2022 Fax

Sign up for regular email updates at:

http://www.ncd.gov/subscribe