Illinois Independent Living Centers rally to oppose choice

According to an article in the Illinois Herald-News by Lauren Leone-Cross, 4/4/16, leaders from two Illinois Centers for Independent Living rallied opposition to House Bill 6304 in the Illinois House of Representatives. 

The bill would allow for “an alternative model” of licensing for “continuum of care” centers for people with developmental disabilities. It is supported by Misericordia, a long-established non-profit continuum of care community in Chicago.

According to the article:
 
Sister Rosemary Connelly, the nonprofit's longtime director, said this alternative care method provides a choice for families of those with severe developmental disabilities. "Community-integrated living arrangements are not for everyone, yet it's perceived as the ‘right and only way,’” Connelly said…“[Opponents] are really denying families the right to choice,” she added.

The Centers for Independent Living along with leaders from the Illinois ARC claim that the bill perpetuates “an antiquated system of service delivery and reinforces Illinois’ historic institutional bias."

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As passionate as the opposition is about preventing communities like Misericordia from continuing to receive public funds, it was no match for Sister Rosemary. The bill passed through the House committee and has won approval by the Illinois House of Representatives.

If you visit the Misericordia campus, you will see that it is neither antiquated nor isolated. Misericordia, including its campus and community residences and businesses, has changed over the years to meet the changing needs of the disability community. When I was there in October 2015, they had just opened an Alzheimer’s nursing facility for people with disabilities as well as maintaining a variety of living and recreational facilities. It is located in a north side Chicago neighborhood with access to all the amenities of city life along with specialized services for people with the most severe disabilities.

The 2014 Home and Community-based Services (HCBS) rule is being exploited by federal and some state agencies and federally-funded advocates to limit choice and shift more responsibility onto over-stressed families and communities unprepared to serve people with severe disabilities. Misericordia’s programs and services may be in  jeopardy if this continues. 

And isn’t this ironic? Centers for Independent Living are required to have a majority of their staff and board members be people with disabilities, but their leadership opposes all congregate settings that group more than 3 or 4 people together when they have intellectual and developmental disabilities. Here’s an interesting question: If a person with ID/DD wants to work  at a CIL, could HCBS funding to assist the individual be denied because of the institutional quality of the CIL with so many people with disabilities in one place?

More on Misericordia...

Supported Decision Making versus the protections of court-ordered guardianship

"Supported Decision Making" (SDM) is an idea that seems both obvious and benign. Who could be against a person with a disability being assisted by friends, family, and knowledgeable acquaintances in making important decisions in their lives? We all do this routinely, whether it is in anticipation of buying a car, moving to a new job in a new community, or weighing the benefits and risks of recommended medical treatments. 

But what happens when SDM is proposed as a replacement for the protections of a court-ordered guardianship for a person who is incapable of making some or all decisions on his or her own behalf? Who will be making the decisions for the person? Guardians, 75% of whom are family members or close friends of the individual, are accountable to the person and the court. Without a guardian and the ability to make or communicate decisions, how is the individual protected from abuse, neglect, and exploitation?

VOR has posed this question in the following:

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VOR on Guardianship and Supported Decision Making

By Hugo Dwyer and the VOR Issues/Oversight Committee

Guardianship is the legal process whereby the courts appoint a person “to have the care and custody of a minor or of an adult who has been legally determined to be incapacitated.” Guardianships are awarded to protect the individual from abuse, neglect, and exploitation and guardians are expected to act in the best interests of the individual concerning their residential, medical, psychiatric, behavioral, and financial needs. Legal guardianship is both a responsibility and a privilege.

VOR maintains that strong, well-monitored guardianships are essential to the protection and well-being of individuals with Intellectual and Developmental Disabilities (I/DD) who cannot make decisions for themselves. 

Our membership consists primarily of people who have family members with severe and profound intellectual and developmental disabilities, many of whom have multiple disabilities that may include chronic medical conditions, seizure disorders, visual or hearing impairments, mental illness, and/or extreme behavioral challenges. Many of these individuals function at an infant or toddler’s level although fully grown and need substantial support in every aspect of life. In most cases, our disabled family members have been adjudicated incompetent and a legal guardian has been appointed for them, most often a parent, a sibling or other close relative, or a family friend.
 
As in every other branch of our legal system, there are incidents of malfeasance and abuse in guardianship: over-burdened or mismanaged court systems, probate attorneys whose primary interest is to collect fees, corporate or state guardianship systems that fail to adequately protect vulnerable individuals, isolation of wards from family or friends, and other forms of exploitation for the personal gain of guardians or guardianship agencies.

Partly as a response to these problems, new initiatives have emerged with the goal of altering, weakening, and even eliminating existing guardianship laws. Supported Decision Making (SDM) is one initiative that has been promoted by many disability rights advocates. Proponents of this system, notably the Burton Blatt Project at Syracuse University and the Quality Trust for Individuals with Disability, generally advocate on behalf of individuals with less severe levels of intellectual disability, who are usually better able to interact with their environment and can often express their own desires and articulate their needs. They have launched a campaign called “The Jenny Hatch Justice Project”, named after a young woman with Down Syndrome who challenged her parents’ request for guardianship in favor of SDM principles.

It appears that the Supported Decision Making movement would change guardianship laws to address the status of those who need guardianship the least, if at all. In the process, these changes could weaken protections for those who are the most vulnerable, the very people for whom guardianship laws were originally written. VOR is deeply concerned about any effort to weaken the protections of Guardianship.
 
We believe that guardians for individuals with severe intellectual disabilities already include a network of informed persons when making decisions for their wards. This usually includes the guardian, other family members, direct care staff and medical personnel. The more an individual is able to express his or her wishes and play an informed, responsible role in their own decision-making process, the more their participation should be included. But we believe it is irresponsible to remove the individual from the protection of the court and ongoing evaluation. Most individuals with intellectual disabilities change over time, their needs change accordingly, and their ability to make their own decisions in an informed and responsible manner should be examined at regular intervals, to make sure that they are receiving appropriate care and that all of their needs are being properly addressed.

Changes to guardianship laws in many states have already been proposed. Families should keep abreast of these changes, and advocate for their loved one if the changes could weaken the protections he or she relies upon. VOR will do its best to keep you informed. Our vulnerable family members deserve nothing less than the protections that family guardians can provide.

For more information on guardianship, visit us at our  website.

New York forums on the impact on DD of transition to more integrated settings

From longislandexchange.com, for Immediate Release: April 11, 2016:

"[N.Y] Assembly Minority Protects Rights Of Individuals With Developmental Disabilities"
 
Assembly Minority Task Force on Protecting the Rights of People with Developmental Disabilities to hold series of statewide forums

(Long Island, NY) The impact of the U.S. Supreme Court decision Olmstead v. L.C. continues to generate concerns from family members, caregivers, community organizations and individuals with developmental disabilities throughout the transition process into more integrated work settings. As a result, the Assembly Minority Task Force on Protecting the Rights of People with Developmental Disabilities has been created to evaluate the effectiveness of current transition plans for those in sheltered workshops, developmental centers, and community homes and to ensure that the input and desires of people with developmental disabilities are being considered.

The task force will be hosting regional forums across the state in an effort to better address the current transition plans and other important issues facing individuals with developmental disabilities and their families. This forum, the fourth in a series of statewide events, will take place on Wednesday, April 20 from Noon to 2 p.m. at the Medford Fire Department, 171 Oregon Ave., Medford.

“As legislators, it is our job to gather information, assess it and propose meaningful solutions to issues affecting our community. This task force will provide us the opportunity to hear about concerns directly from those with developmental disabilities, their families and local organizations,” said Assemblyman Dean Murray (R,C,I-East Patchogue). “I look forward to an open discussion that will ultimately provide us insight to make meaningful reforms and improve the quality of life for those with developmental disabilities.”

“A concerted, statewide effort to improve services for those with developmental disabilities is the only way to make certain every New Yorker is fairly represented,” said Assemblyman Clifford W. Crouch (R-Bainbridge), task force chairman. “No New Yorker should be marginalized, and it is our job to make sure that never happens. Together, we will address the concerns of those with developmental disabilities and aggressively tackle those concerns head-on.”

Representatives from non-profit organizations and facilities, community leaders and mental health experts have been invited to attend and provide testimony. The task force is also encouraging individuals with disabilities and their families to share their firsthand experiences as a result of the Olmstead Decision.

For more information on the task force, please contact the Assembly Minority Office of Public Affairs at 518-455-5073.

To submit comments, send an email to: minpaff@assembly.state.ny.us

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What better time than now, whether you live in New York or elsewhere, to get the lowdown on Olmstead, the 1999 U.S. Supreme Court decision interpreting the Americans with Disabilities Act? 

The Olmstead decision has been routinely misinterpreted and distorted by many advocacy organizations, government agencies, and the media, as a mandate for "community only" placement for people with disabilities.  At its core, it is a thoughtful decision which balances individual need, choice, and state resources, while prohibiting "unjustified isolation" on the basis of disability.

Read more:

Olmstead, brought to you by the U.S. Supreme Court 

Olmstead Misinterpreted

The Americans with Disabilities Act

What does the ADA "integration mandate" really mean?

What does the ADA "Integration Mandate" really mean?

Title II of the Americans with Disabilities Act (ADA) prohibits discrimination on the basis of disability in State and local government services. Federal policy on the provision of services and benefits to people with disabilities is far more flexible and less restrictive than many advocates of full community inclusion are willing to admit. There are no mandates that prohibit particular settings or services for individuals with disabilities in general, and the needs and choice of the individual are a primary consideration.

Here is the link to § 35.130 of ADA regulations on "General prohibitions against discrimination" that describe requirements for State and local governments in providing services to people with disabilities.

Below are some of the requirements that may at first seem contradictory, but are written to assure that individual needs take precedence over general presumptions and bias based on preconceived ideas of what individuals are capable or not capable of doing as a class:

Paragraph (b) (1) (iv): A public entity, in providing any aid, benefit, or service, may not, directly or through contractual, licensing, or other arrangements, on the basis of disability…

Provide different or separate aids, benefits, or services to individuals with disabilities or to any class of individuals with disabilities than is provided to others unless such action is necessary to provide qualified individuals with disabilities with aids, benefits, or services that are as effective as those provided to others;

Paragraph (b)(2): A public entity may not deny a qualified individual with a disability the opportunity to participate in services, programs, or activities that are not separate separate or different, despite the existence of permissibly separate or different programs or activities.
 
Paragraph (d): A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.

Paragraph (e): Nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit provided under the ADA or this part which such individual chooses not to accept….
  
An analysis of the regulations discusses requirements that allow for both the effective provision of services and choice, as well as assuring that individuals are not restricted from equal participation in a public entity’s programs or activities. Page 193 of the regulations includes an analysis that clarifies the meaning of these important paragraphs:

Paragraph (b)(1)(iv) permits the public entity to develop separate or different aids, benefits, or services when necessary to provide individuals with disabilities with an equal opportunity to participate in or benefit from the public entity’s programs or activities, but only when necessary to ensure that the aids, benefits, or services are as effective as those provided to others.

[This] paragraph must be read in conjunction with paragraphs (b)(2), (d), and (e). Even when separate or different aids, benefits, or services would be more effective, paragraph (b)(2) provides that a qualified individual with a disability still has the right to choose to participate in the program that is not designed to accommodate individuals with disabilities.

Paragraph (d) requires that a public entity administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.
 
Paragraph (b)(2) specifies that, notwithstanding the existence of separate or different programs or activities provided in accordance with this section, an individual with a disability shall not be denied the opportunity to participate in such programs or activities that are not separate or different.

Paragraph (e), … states that nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit that he or she chooses not to accept.

Taken together, these provisions are intended to prohibit exclusion and segregation of individuals with disabilities and the denial of equal opportunities enjoyed by others, based on, among other things, presumptions, patronizing attitudes, fears, and stereotypes about individuals with disabilities. Consistent with these standards, public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do. [emphasis added]

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In short, the ADA does not restrict individuals from receiving services in specialized settings for people with disabilities nor does it allow public entities to prevent access to services and benefits available to all. 

The 1999 U.S. Supreme Court Olmstead decision affirms this interpretation of the ADA and includes protections and choice for people in institutional settings.

Illinois : Proposed bill creates new system for "Continuum of Care" centers

"Molly Bourke's Journey" is about one of the 600 people with developmental disabilities who receives services from Misericordia in Chicago, Illinois.

An article in the Illinois Herald News by Lauren Leone-Cross, 4/2/16, reports on a bill before the Illinois House of Representatives that would create a new licensing system for "Continuum of Care" centers for people with developmental disabilities:

"The bill [HB 6304] would allow the state to apply for a federal waiver under Section 1115 of the Social Security Act, allowing for 'an alternative model' of licensing, reimbursement and quality assurance. Such a waiver allows states to test out experimental and pilot programs that do not necessarily meet federal Medicaid and Children's Health Insurance Program rules." 

The legislation is being pushed with strong support from the Chicago nonprofit Misericordia, "a 31-acre continuum of care campus that services more than 600 people with a staff of 1,000." Advocates, such as the Centers for Independent Living, who oppose everything but "full community inclusion" are rallying opposition to the bill.

"Sister Rosemary Connelly, [Misericordia's] longtime director, said this alternative care method provides a choice for families of those with severe developmental disabilities.

"'Community-integrated living arrangements are not for everyone, yet it's perceived as the 'right and only way,'" Connelly said.

“'[Opponents] are really denying families the right to choice,' she added."

Federally-funded advocates who oppose the bill, claim that it violates the U.S. Supreme Court's 1999 Olmstead decision that they say mandates full community integration. This is a misinterpretation of Olmstead that is so prevalent among advocacy organizations that promote full inclusion and many government agencies that it can only be described as a purposeful misstatement of the Supreme Court decision.  

Olmstead affirms the Americans with Disabilities Act (ADA) regulation that says that "a public entity must administer services, programs, and activities in the most integrated, least restrictive setting appropriate to the needs of qualified individuals with disabilities."
[28 C.F.R. § 35.130(d)] [emphasis added]

Neither the ADA nor Olmstead support only community care or only institutional care: 

"[O]ne conclusion seems plain: some disabled individuals can benefit from community placement, and some may not. While all disabled are covered by the ADA, different remedies are recognized by the statute for different degrees of disability." [Brief at VOR et al., as Amici Curiae, in Olmstead v. L.C., at 6 (February 3, 1999)]

Under the Illinois Continuum of Care system proposed by the bill, I wonder if it would be  possible for Intermediate Care Facilities and other institutional and group settings for people with intellectual disabilities to become vital resources for their surrounding communities. This could be done by waiving part of the Home and Community-Based settings rule from CMS that makes it nearly impossible to open these facilities to non-residents living in the community. 

The current policy is to close facilities and release their residents into communities that are often unprepared for them and lack needed specialized services. More often than not, "the community" fails to live up to a utopian vision of community inclusion. 

According to the news article, "under the bill, continuum of care facilities would be required to provide community-integrated living arrangements near their campuses, employment opportunities, training programs and skilled-nursing residential care."  

This blended system with Continuum of Care centers acknowledges the need for a "Continuum of Care" to meet the "Continuum of Needs", especially for people with the most severe developmental and behavioral disabilities.

More on Misericordia...

Policy Statement on Guardianship and Supported Decision Making from VOR

VOR is a national nonprofit organization that advocates for a full range of residential options and services to meet the diverse needs of people with intellectual and developmental disabilities.

VOR represents many families of people with severe and profound intellectual and related disabilities. Most of our loved-ones need substantial support in every aspect of life and many function at an infant or toddler's level although fully grown; many have multiple disabilities, chronic medical conditions and/or behavioral challenges. Some have seizure disorders, mental illness, visual or hearing impairments, or a combination of these conditions.  

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Guardianship is the legal process whereby the courts appoint a person "to have the care and custody of a minor or of an adult who has been legally determined to be incapacitated.” Guardianships are awarded to protect the individual from abuse, neglect, and exploitation and guardians are expected to act in the best interests of the individual concerning their residential, medical, psychiatric, behavioral, and financial needs. Legal guardianship is both a responsibility and a privilege.

Supported Decision Making (SDM) is a national initiative that promotes “a process in which adults who need assistance with decision-making … receive the help they need and want to understand the situations and choices they face, so they can make life decisions for themselves, without the need for undue or overbroad guardianship”. Many advocates for SDM go further in explicitly supporting the elimination of guardianship. VOR believes that SDM is not a valid replacement for legal guardianship as it lacks standards, accountability, and proven effectiveness in protecting people with significant disabilities.
 
VOR Principles:

• VOR supports guardianship for people who are determined by a court of law to be incapacitated in making decisions for themselves in some or all aspects of their lives.
• VOR supports guardians, especially relatives and close friends of the individual, who willingly take on the responsibility and duties of guardianship, as required by law, to protect the vulnerable individual from abuse, neglect, and exploitation. Most of us, including legal guardians, rely on friends, family, and trusted professionals to advise us on important decisions.
• VOR supports state courts in upholding reporting and monitoring requirements that assure the accountability of guardians to protect the rights and best interests of the individual.
• VOR opposes the granting of guardianship to anyone who has, or would have an excessive number of wards to oversee and support
• VOR opposes initiatives that are intended to eliminate legal guardianship or to make it more difficult for families and friends of vulnerable individuals to become guardians. These initiatives could result in a greater risk to people with significant disabilities for abuse, neglect, and exploitation. 
• VOR opposes Supported Decision Making as a replacement for guardianship. SDM assumes that the individual has the capacity to make decisions and give informed consent. Our disabled family members for the most part do not have this capacity.
• VOR does not oppose the use of Supported Decision Making for all who voluntarily wish to use methods promoted by advocates of SDM. However, all decisions must rest ultimately with the individual, or for those who are not capable of making decisions for themselves, with the court-appointed legal guardian. Assurances should be made that guardianship procedures are available to those who need them, regardless of their participation in SDM activities.

Federal Law Supports Family Decision Making

“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.” - The Developmental Disabilities Assistance and Bill of Rights Act of 2000, 42 USC 15001(c)(3)(2000)

VOR position statement