Ohio: A Joint Committee finds the current system of protection and advocacy intentionally fails to protect and advocate for all individuals with disabilities

The Federal Developmental Disabilities Assistance and Bill of Rights Act of 2000, (The DD Act), establishes Protection and Advocacy agencies in all 50 states and territories. According to the Federal Administration on Community Living, "Protection & Advocacy agencies (P&As) comprise the nation's largest provider of legally-based advocacy services for people with disabilities."

P&As have the legal authority to:

• Investigate suspected abuse or neglect and seek justice for victims and their families.
• Have access to records and facilities necessary to investigate abuse or neglect or to monitor the treatment and safety of residents.
• Pursue litigation and all other appropriate remedies under federal, state, and local law.
• Provide information and referrals regarding entitlements to services and other legal rights.
• Educate policymakers on needed reforms to disability-related laws and services.

The names of these organizations vary from state to state: In Michigan, the designated agency is Disability Rights Michigan. In Ohio, Disability Rights Ohio is the State's P&A agency. In Illinois it is "Equip for Equality" .  The National Disability Rights Network represents P&A systems nation-wide.

The P&A systems often advocate for people with disabilities beyond developmental disabilities. In Michigan, according to the Website, "Disability Rights Michigan (DRM) is the federally mandated protection and advocacy system for Michigan, which receives part of its funding from the HHS-Administration for Community Living, DOE-Rehabilitation Services Administration, HHS-Substance Abuse & Mental Health Services Administration – Center for MH services, Social Security Administration, and the State of Michigan".

The hearings held by the Ohio Joint Commission were mainly focused on people with Intellectual and Developmental  Disabilities, many of whom live in Intermediate Care Facilities for people with IDD. P&A organizations have been at the forefront of trying to close or drastically downsize these facilities for decades, despite the fact that these are highly regulated facilities, sanctioned and funded by Medicaid. Attempts to close them down have been met with fierce opposition from the people benefiting from these services and their families.They provide treatment and residential services to people with severe and profound disabilities. 

There was also testimony supporting facility-based employment for people who could not otherwise compete for jobs in integrated employment. P&A along with many other advocacy organizations are attempting to close down these programs, despite support for them from people with IDD and their families who benefit from them.

Testimony was also heard from supporters of DRO. Many described abusive conditions that they had endured in residential facilities, but mostly these were  nursing homes or psychiatric facilities that are not specialized for people with IDD. 

This is from the VOR Weekly Update for April 14, 2023:

Ohio - Joint Commission Recommends Redesignating State's Protection and Advocacy Agency

On April 11, 2023, Ohio's Joint Commission to Examine the State Protection and Advocacy System and Client Assistance Program recommended to the Governor that the state "redesignate" its P&A, having found Disability Rights Ohio for "intentionally not protecting and advocating for all individuals with disabilities."

The report came in response to hearings on Nov. 1 and Nov. 15, 2023 in which families testified about their dissatisfaction with the DRO's actions and biases against people in ICFs and sheltered workshops.

Excerpted from the report:

"[T]estimony given by parents, guardians, and family members expressed concerns over DRO’s administration of its service system. Specifically, the testimony described DRO’s excessive litigation against the State to which families objected. It also described DRO’s efforts to promote transfers of residents out of ICFs, sheltered workshops, and facility-based day programs into community settings without regard to individual choice and parental rights. 4 Those efforts included DRO staff meeting privately with ICF residents without their guardians or parents present to encourage them to leave their ICF placement.

"Furthermore, the testimony indicated unilateral actions taken by DRO to target ICF settings, day programs, and workshops, without seeking cooperation from families and ignoring families’ advocacy to preserve these settings. Witnesses stated DRO’s actions run counter to health and safety needs and disregard the informed decision-making of families. Moreover, witnesses emphasized the importance of the specialized services and expertise offered in ICFs to support individuals with complex physical, medical and/or behavioral needs.

"The witnesses also touched on the issue of aging caregivers, and the importance that families have access to intermediate care facilities to appropriately address the needs of their loved ones when they are no longer able to provide that care. In addition, witnesses stated that it is vital for policymakers to underscore and promote a multi-dimensional strategy, which includes access to ICFs, sheltered workshops, facility-based day programs, and community-based residential and work settings. However, witnesses stressed that DRO takes a one-size-fits-all approach preferring community settings to the detriment of other options. In its adherence to this approach, families are concerned that DRO acts adversely to their disabled family members’ interests who require higher levels of specialized care."

Download the report here

The hearings may be viewed here:

November 1 Hearing: https://ohiochannel.org/video/ohio-joint-committee-to-examine-the-protection-and-advocacy-system-11-1-2022

November 15th Hearing: https://www.ohiochannel.org/video/ohio-joint-committee-to-examine-the-protection-and-advocacy-system-11-15-2022

Ohio has a provision in its state code that calls for hearings before the state legislature every two years allowing families to testify about the state's Protection and Advocacy agency.

This section of the State Code may be found at https://codes.ohio.gov/ohio-revised-code/section-5123.603

We hope that other states will follow Ohio's lead and add such provisions to their own state codes.

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More information on DD Act Programs from The DD News Blog: DD Act programs, "for better and for worse"

Michigan groups sue to "Stop the Hamster Wheel" - Medicaid hearings that are never resolved due to lack of adequate funding

A press release from three legal advocacy groups, Including Michigan Protection and Advocacy Services (MPAS), alleges "Systematic Due Process Violations in Michigan Medicaid Program":

...Lansing, MI – Medicaid recipients have long had rights to “fair hearings” to challenge actions affecting their benefits. According to a new lawsuit, however, recipients in Michigan cannot get relief from those hearings, even when they win.

The suit, filed by attorneys for Michigan Protection & Advocacy Service, Inc. (MPAS), the National Center for Law and Economic Justice (NCLEJ) and Legal Services of South Central Michigan (LSSCM), says that the administrative law judges (ALJs) presiding over fair hearings lack the power to order the agency to grant the benefits it had wrongfully denied. All they can do is send the case back to the agency to “reassess” the recipient. And when the agency comes back with the same decision on reassessment—as it often does—all the recipient can do is ask for another fair hearing, where the same thing will happen again. This is the Michigan Medicaid “Hamster Wheel”: recipients run and they run and they run, but they never get anywhere.

Named Plaintiff Kevin Wiesner lives with various disabilities, and he relies on Medicaid-funded community living supports (CLS) to stay in the community. In 2019, he challenged the CLS budget provided by Washtenaw County Community Mental Health (WCCMH), and the ALJ held in his favor in every respect: The budget was insufficient to meet Kevin’s medical needs, it had been insufficient since at least 2015, and at least a certain, specific amount was required to make it sufficient. But the ALJ did not—because he said he could not—order a budget of that amount. Instead, he told WCCMH to “reassess” Mr. Wiesner’s needs. To no one’s surprise, WCCMH’s “reassessment” ignored the ALJ’s determination and denied Mr. Wiesner any increase at all.

“For more than 50 years, the Constitution and federal statutes have guaranteed public benefit recipients the right to an impartial determination of their benefits,” said Ed Krugman, a senior attorney at NCLEJ, “The Michigan Hamster Wheel makes a mockery of that right. Kevin Wiesner fought for the services he needs, and he won, but he got precisely nothing. That is a travesty.”

“The Medicaid Fair Hearing System is supposed to give recipients the right to challenge actions that negatively affect their benefits,” said Kyle Williams, legal director for MPAS. “If administrative law judges are only allowed to order reassessments, they can never win those challenges, because the reassessment decision is ultimately in the hands of the agency that took the negative action in the first place.”

Nick Gable, attorney for LSSCM, offered a similar thought. “The Medicaid fair hearing “Hamster Wheel” has been a problem for years, to the point that appeals challenging personal care or home and community-based support services denials are rendered futile. A legal challenge to the Hamster Wheel is overdue.”

The suit names WCCMH, Community Mental Health Partnership of Southeast Michigan, their directors, and Michigan Department of Health and Human Services Director Robert Gordon as defendants. The requested relief seeks to end the practice of ALJs remanding cases without ordering specific relief for Medicaid recipients.

Michigan Protection and Advocacy Service, Inc. (MPAS) is the independent, private, nonprofit organization designated by the governor of the State of Michigan to advocate and protect the legal rights of people with disabilities in Michigan.
www.mpas.org

Since 1965, the National Center for Law and Economic Justice (NCLEJ) has worked with low-income families, individuals, communities, and a wide range of organizations to advance the cause of economic justice through litigation, policy work, and support of grassroots organizing around the country.
www.nclej.org

Legal Services of South Central Michigan provides free legal advice and representation to low-income individuals, families, and older adults.
www.lsscm.org

###

For more information, contact:

Mark McWilliams
mmcwilliams@mpas.org

or Edward P. Krugman

krugman@nclej.org

Kerry Kafafian [kerrykafafian@gmail.com ], Kevin's mom, is also willing to provide more information about the lawsuit.

VOR, "a Voice Of Reason", comments on a National Council on Disability report on guardianship, Part 2

The National Council on Disability (NCD) Report, "Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”, is over 200 pages long and contains historical as well as current information on guardianship. To simplify and focus VOR's response, VOR comments on the seven findings from the report.

The NCD admits from the outset that there is a lack of reliable and comprehensive data on guardianship that makes it impossible to know for sure whether systemic reforms are necessary. This caveat, however, does not prevent the NCD from making recommendations for reform. Part 3 of The DD News Blog comments on the report will cover more information about the NCD and the philosophical underpinnings of the movement to replace guardianship with Supported Decision Making and other alternatives.

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VOR Comments on the Seven Findings of “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities” 

Finding 1: There is a lack of data on existing guardianships and newly filed guardianship. 

VOR agrees with this finding and the recommendation to “develop initiatives to produce effective and comprehensive data on guardianship”. We recommend that data should also be collected on the welfare of persons who have been removed from the protections of court-ordered guardianship. 

This finding supports a conclusion that without more reliable and complete data on guardianship, it is not possible to determine whether systemic reforms are needed. Evidence is also lacking that would support the limiting of guardianship or the wholesale replacement of guardianship with Supported Decision-Making or similar alternatives. 

Finding 2: People with disabilities are widely (and erroneously) seen as less capable of making autonomous decisions… 

VOR disagrees with the above statement, especially the word, “erroneously”. It may be true that some people with disabilities are incorrectly assumed to be unable to make autonomous decisions. Others, especially those with profound and severe intellectual disabilities and other complex medical and behavioral conditions, are indeed incapable of making decisions for themselves in some or all aspects of their lives. When necessary, they should be afforded the due process protections of guardianship to assure that their interests and rights are protected. 

In recommending that the DOJ [U.S. Department of Justice] should issue guidance to states on their legal obligations under the ADA [Americans with Disabilities Act] in regards to guardianship, it is not clear what the NCD has in mind or how much control the federal DOJ has over state court-appointed guardianships. Unfortunately, the ADA and the 1999 Supreme Court Olmstead decision interpreting the federal anti-discrimination law have been widely misinterpreted to require that services be provided in the “community”. They have been incorrectly used to limit the choices and range of services available to people with I/DD. 

Guardianship may be inappropriate for some people with disabilities, but a finding that an individual lacks the capacity to make informed decisions and needs the protection of guardianship is not in itself discrimination. 

Olmstead does not address guardianship or other forms of surrogate decision-making. The 2014 Home and Community-Based Settings Rule, however, confirms the authority of state courts to appoint guardians to represent people with disabilities: “We note that where a legal guardian, conservator, or other person has the sole authority under state law to make decisions related to the individual’s care, the state must comply with the decisions of the legal surrogate.” [p. 2995 of the Federal Register of 1/16/2014; Definition of Individual’s Representative] [emphasis added]. 

The recommendation that DD Councils, Universities of Excellence in Developmental Disabilities, and Protection and Advocacy organizations should work to avoid guardianship ignores the recognition of individual needs, including the possible need for court appointed guardianship. 

Finding 3: People with disabilities are often denied due process in guardianship proceedings. 

VOR believes that the vast majority of Probate Courts and state guardianship laws assure due process when properly enforced. We would appreciate any information on courts that do not adhere to this standard. 

Finding 4: Capacity determinations often lack a sufficient scientific or evidentiary basis. 

VOR believes that this finding is a broad generalization and is not accurate. Requests for guardianship usually include statements from qualified physicians along with other information on the functioning abilities of the individual and recommendations on the need for guardianship. Recommendations and observations by parents and other family caregivers as to the functioning abilities of the individual should be included in assessments for guardianship. 

Finding 5: Guardianship is considered protective, but courts often fail to protect individuals. 

VOR believes this statement is overly broad and subjective. Most states require reports from guardians on the condition of the person under guardianship, and many require additional oversight of guardianship cases. 

We agree with the recommendation for appropriate levels of oversight and regulation of professional and public guardians. 

Finding 6: Most state statutes require consideration of less-restrictive alternatives, but courts and others in the guardianship system often do little to enforce this requirement. 

VOR believes that for people who can make decisions for themselves, less restrictive alternatives to guardianship should be available, based on the needs and desires of the individual. The recommendation to “use SDM [Supported Decision-Making] and the court systems to restore people’s rights”, even for people with severe intellectual disabilities, is questionable. Restoration of rights must consider the capacity of the individual to make decisions in some or all aspects of the person’s life and whether guardianship is needed to ensure a person’s safety, health, and general well-being. SDM has not been proven to be an effective method to replace guardianship and could instead place the person in harm’s ways. 

Finding 7: Every state has a process for restoration, but this process is rarely used and can be complex, confusing, and cost-prohibitive. 

VOR believes that this finding may or may not be true, given that, “Data on restorations is seriously lacking, making it impossible to tell how many individuals are in unnecessary guardianship…”[page 167 of the Report]. There must be recognition that ending guardianship for some people may be fraught with unintended and harmful consequences. For an individual who has undergone rigorous assessments on his/her ability to make decisions, and has been found unable to do so, assessments would either have to show that the initial assessment was incorrect or that changes in the person’s decision-making abilities no longer support a need for guardianship. 

For the most part, the federal Protection and Advocacy system opposes guardianship on an ideological basis rather than following its mandate to consider and protect the rights of individuals with developmental disabilities. We believe that to encourage P&A organizations to continue on this path with extra funding to remove individuals from guardianship would be a poor use of federal funds.

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VOR Comments Part 1

Olmstead Resources

Celebrating the 17th Anniversiary of the Olmstead Decision: Opportunities and Choices

Guardianship vs. Supported Decision Making

Forced de-institutionalization of people with DD: lives lost and lives disrupted

The following is an article is from The Voice: News and Views of VOR Supporters for Spring 2018. 

VOR is a national non-profit organization funded solely by dues and donations. It receives no government support. VOR represents primarily individuals with intellectual disabilities and their families and guardians.

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. VOR supports the expansion of quality community-based service options; it opposes the elimination of the specialized facility-based (institutional) option.

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U.S. House of Representatives - Judiciary Committee, Subcommittee on Constitution and Civil Justice Hearings: Examining Class Action Lawsuits Against Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) 

On March 6th, 2018, the House Judiciary’s Subcommittee on Constitution and Civil Justice convened to examine the harmful effects of class action lawsuits aimed at closing Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF's/IID). The hearing came at the request of Judiciary Committee Chairman Bob Goodlatte (R-VA). and was chaired by Rep. Steve King (R-IA).

Martha Bryant, Mother, RN, BSN & VOR member, Caroline Lahrmann, Mother, VOR State Coordinator for Ohio & past president, and Peter Kinzler, Father, longtime VOR Member, Director & Legislative Committee Chair testified against class action lawsuits. Alison Barkoff of the Center for Public Representation and the Consortium for Citizens with Disabilities, spoke on behalf of those in favor of using class action lawsuits against ICF's/IID and opposed having to provide notification to families and guardians of individuals residing in these homes who would become part of the class.

First to testify was Martha Bryant, a constituent of Congressman Goodlatte who spoke about her son Tyler. Tyler and his brother Taylor were the two surviving brothers of a triplet pregnancy and were born prematurely at 29 weeks. Tyler had severe physical and intellectual disabilities, functioning at the level of a 15-20 month old baby. He was non-verbal and non-ambulatory. His condition required ICF-level care which he had received at Central Virginia Training Center (CVTC) for most of his life.

With complete disregard for his needs, Tyler was forced from his home at CVTC on Jan 17, 2017 as the result of a class action lawsuit initiated by the [U.S.] Department of Justice (DOJ). Tyler was moved to an inadequate and inappropriate non-ICF facility 139 miles away without his mother’s consent, and with no regard for her objections or guidance about the needs of her sons. Tyler could not tolerate the transfer. He was sent to the hospital where he spent 49 days, most of those in the ICU. Less than two months after his transfer, Tyler died in the Richmond hospital alone, more than 100 miles away from his mother who was not present at the time. She was notified of his passing by phone. [emphasis added]

The committee then heard from VOR’s Caroline Lahrmann, the mother of severely intellectually and physically disabled twins who reside in a private ICF in Ohio. Mrs. Lahrmann gave testimony about the class action suit initiated by her state’s Protection and Advocacy agency (P&A) - Disability Rights Ohio (DRO) - aimed at closing all of the state’s public and private ICF’s and uprooting 5,900 people with I/DD from their homes and forcing them into HCBS-waiver settings. The suit would treat all of these 5,900 individuals as if they were one and the same, with the same needs and levels of disability as the six people chosen by DRO to be named parties in the suit. Mrs. Lahrmann quoted from Olmstead to describe the manner in which DRO’s lawsuit violates the spirit and letter of that decision. DRO’s lawsuit has cost the families who oppose it over $100,000 to date. These families are forced to fight against being named as participants in a class action suit that is the antithesis of their wishes for their loved ones. She went on to say that the ability to opt out of these suits is not sufficient, that this type of class action suit should be prohibited on the grounds that, “P&A’s bring class actions against Medicaid accommodations that are needed and chosen by their own clients.” [emphasis added]

Opposition testimony was then provided by Alison Barkoff, a long-time professional advocate for the waiver system who favors closing all ICF’s. Ms. Barkoff told of her family’s refusal to put her brother into an ICF forty years ago, and their struggle to provide for him for years before he was able to receive supplemental at-home services. Her testimony contended that she has seen people leave ICF’s and thrive in the community. She praised the class action suit that resulted in the death of Tyler Bryant for having given community services to the son of a woman named Brenda Booth, who refused the care offered by the state of Virginia in an ICF in favor of waiting for community placement. Ms. Barkoff spoke of “expansion of services” without acknowledging that this expansion in one sector, waiver-based care came at the cost of ICF level care within the system. She did not mention the people who have suffered trauma and death by being displaced from their homes – only of those who have received services as a result of these actions. Rather than advocate for more funds and more services, her approach is to take from one group of people and give to others, and to use expensive class action suits as the way to enact that redistribution of services. [emphasis added]

VOR’s Peter Kinzler was the last to testify. He is the father of Jason, 42, who functions at the intellectual level of a 6-month old and requires 24/7 care for all aspects of living. For 37 years, Jason received excellent care at North Virginia Training Center. In 2016, NVTC was closed by a class action suit by DOJ, in accordance with their policy, “Community Integration for Everyone”. They did this under Federal Rule 23(b)(2) [regarding class action lawsuits], which swept all individuals residing in ICF’s into the suit, with neither advance notice nor the right to opt out. DOJ claimed to have consulted with “a whole laundry list" of people in the system. The only people not consulted were the families of the residents of the ICF. Despite near unanimous opposition by the families, DOJ went on with their case. They opposed the families motion to intervene in the case, forcing them to spend over $125,000 in legal fees. The judge then ignored the families’ opposition and accepted a settlement between the DOJ and the State of Virginia. Mr. Kinzler’s family was forced to choose between putting Jason in a group home forty minutes from his home or into an ICF 160 miles away. To make things worse, the closure timetable was not tied to the creation of resources sufficient to handle the displaced individuals. Such displacements have resulted in considerably higher rates of mortality among this fragile population. [emphasis added]

After testimony, Rep. Goodlatte, Rep. Cohen (D-TN), and Chairman King asked the participants a number of questions to illustrate the issues brought up in their testimony. Mr. Cohen asked Ms. Barkoff if there were protections for people who oppose class action suits. She insisted that these protections exist, making a bill that would allow families to opt-out unnecessary. Her response was in direct conflict with the experiences and testimony of Ms. Bryant, Mrs. Lahrmann, and Mr. Kinzler. Rep. Goodlatte asked Ms. Bryant if others who had been forced out of the CVTC had suffered or died as a result of their displacement. She stated that of the 42 people transferred into the community, Tyler was the tenth death that she knew about. When asked by Rep. Goodlatte about the importance of being able to intervene in these class action suits, Mrs. Lahrmann replied that the judge in her case told her that without the ability to intervene, she would have had no rights in the case in which her children were unwilling participants. [emphasis added]

Toward the end of the hearing, Rep. Goodlatte asked several questions of Ms. Barkoff that highlighted the inconsistencies in testimony. He asked if she was aware of any class actions P&A’s conducted against group homes. She skirted the question several times and never gave a direct answer. He went on to ask her if the P&A’s had an anti-institution agenda. She replied that in her opinion, they did not. He went on to say that the process as it exists, is inflexible and that it does not recognize the needs of people in ICF’s or their families, and that more protections were needed.

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The written testimony and the full video of the hearing is available here.

Here is a link to the hearing on YouTube. The hearing begins at 5:18.

"Representative Payees" and the expanded role of Protection & Advocacy Agencies

The Strengthening Protections for Social Security Beneficiaries Act of 2018 was recently passed by Congress and signed by the President. 

Protection and Advocacy (P&A) agencies will play a major role in the monitoring and oversight of the Representative Payee program under the Social Security Administration. Representative Payees are appointed by the SSA to manage Social Security benefits for people who are unable to handle them on their own. As adults, most people with DD qualify for Supplemental Security Income (SSI) and Social Security disability benefits after a parent dies, retires, or becomes disabled.

P&As are mandated by the DD Act of 2000 to protect the rights of individuals with developmental disabilities. These federally-funded agencies have different names in different states: for example, in Michigan P&A is called Michigan Protection and Advocacy Services (MPAS); in Ohio it is Disability Rights Ohio (DRO); and in Illinois it is Equip for Equality.

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This is what I have discovered so far about about the Strengthening Protections for Social Security Beneficiaries Act of 2018 and the new role for Protection and Advocacy:

The legislative history of the Act explains the changes in Social Security Administration (SSA) policy in regard to selecting and monitoring Representative Payees for beneficiaries who are unable to handle their benefits on their own. The rationale for changes to SSA policies is based on reports and reviews from the Social Security Advisory Board, the National Academy of Sciences, and the Government Accountability Office (GAO). [Links to these reports and others are in the footnotes for the legislative history]. The problem with the reports and studies that I have seen on representative payees is similar to reports on guardianship. The data available on abuse is mostly anecdotal with sensational cases being used to justify major changes to the system. In my opinion, the data is not reliable or complete enough to draw conclusions generally on what is wrong with the system and how it affects individual beneficiaries.

The SSA is attempting to improve the way it selects, oversees, and monitors representative payees by having Protection and Advocacy agencies take over this function that was previously been done by another vendor. An annual grant of not less $25 million will be distributed among P&A agencies for purposes specified in the Act.

In addition, “The SSA also would issue an annual grant to a highly-qualified national disability association to provide training and other support for the review program to the SSA and the P&A agencies. The Committee expects the SSA, P&A system, and national association to work together in partnership to ensure an effective and efficient review process, over which the SSA would retain oversight responsibilities.” The "national disability association" is not specified by name in the law.

From the legislative history:

Currently, “The SSA primarily relies on annual accounting reports and periodic on-site reviews to monitor the performance of representative payees and ensure benefits are being used properly. The Social Security Act requires on-site reviews for certain organizational and individual payees, and the SSA conducts additional discretionary reviews of other payees."

“By law, the SSA is required to conduct periodic on-site reviews for three categories of payees: individual payees with 15 or more beneficiaries; all non-profit, community-based social service organizations; and any other type of agency with 50 or more beneficiaries. The law also requires the SSA to conduct on-site reviews of state mental institutions. …”

Under the new law, accounting forms will no longer be required of individual payees who live with the beneficiary and are parents or spouses of the person receiving benefits. P&As will do on-site visits rather than rely on accounting forms to find abuse in the system. P&As may pursue additional monitoring activities based on what they find from their on-site reviews. According to the new law, in conducting reviews, a protection and advocacy system “shall have the same authorities, including access to records, facilities, and persons, as such system would have for purposes of providing services under subtitle C of title I of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15041 et seq.).”

The new law also promotes information sharing between states and the SSA with agencies that have information on current or potential representative payees who may have been found untrustworthy through state Adult and Child Protective Services investigations and state hearings or investigations of court-appointed guardians.

The legislative history heaps praise on the Protection and Advocacy system that may not be deserved, considering that P&As have rarely been held to account for complaints against them by families and some advocacy organizations that object to P&As promoting an ideology of full inclusion* rather than protecting the individual rights of people with developmental and other disabilities as the law requires: 

[* full inclusion refers to the belief that people with disabilities should be completely integrated in "the community" receiving services in settings with people who are not disabled; more than 3 or 4 people with disabilities grouped or living together to receive services is considered segregated and isolating, regardless of the severity or nature of the disabilities or the need for specialized services and settings.]

“The new provision recognizes the superior training, experience, and track record of the nationwide P&A system, which began to do reviews on behalf of the SSA after the Henry’s Turkey Service abuses were uncovered. The SSA turned to the NDRN (the nationwide representative of the state P&A systems) in 2009 because of their previously-established relationship through the Protection and Advocacy for Beneficiaries of Social Security program, and NDRN’s long experience protecting and advocating for persons with disabilities.”

“Because P&A agencies are located in each state and territory, and have extensive contacts in their local communities, they receive reports from the community alerting them to beneficiaries who may be experiencing neglect or abuse. “

“The models do not incorporate other information that might indicate risk, such as housing code violations, reports of abuse of residents, high staff turnover, and so forth. Because of P&A agencies’ relationships in their local communities, in combination with their other work, they may be in a better position to identify and review risky payees.”

Whether P&A agencies would continue to promote their agenda over the rights of individuals under the new law, remains to be seen. There is nothing mentioned in the legislative history or in the law that offers protections against this. Because most representative payees, as well as guardians, are family members or personal friends of the individual beneficiaries, they (we) are a problem for the government-funded agencies and advocacy organizations because our loved-ones are more important to us than advancing their ideology.

U.S. House Hearing on Class Action Lawsuits that are used to close Facilities for people with Intellectual Disabilities

The U.S. House of Representatives Judiciary Subcommittee on the Constitution and Civil Justice held a hearing on the use of class action lawsuits brought by government-funded agencies that often result in the closure of facilities for people with intellectual disabilities. Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) are medicaid-funded and highly regulated homes for tens of thousands of people with severe and profound disabilities. Parents and guardians whose family members live in these facilities were given a chance to voice their objections to lawsuits that include their family members against the wishes of the individuals and their families and without regard to the best interests of the individuals involved. Alison Barkoff from the Consortium of Citizens with Disabilities defends the use of class action lawsuits and represents many of the advocacy organizations that have been involved in promoting deinstitutionalization of all people with disabilities regardless of the severity or nature of their disabilities. 

This is from the VOR Website: 

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VOR Testimony at House Judiciary Committee Hearings 

On March 6th, 2018 the House Judiciary Committee convened to examine the harmful effects of class action lawsuits aimed at closing Intermediate Care Facilites for Individuals with Intellectual Disabilities (ICF's/IID). The hearing came at the request of Chairman Bob Goodlatte.

Testimony was presented by Martha Bryant, Mother, RN, BSN & VOR member, Caroline Lahrmann, Mother, VOR Ohio State Coordinator & past president, and Peter Kinzler, Father, longtime VOR Member, Director & Legislative Committee Chair. Alison Barkoff of the Center for Public Representation spoke on behalf of those in favor of using class action lawsuits against ICF's/IID and opposed to providing notification to families and guardians of individuals residing in these homes. 

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You can listen to the oral testimony at the Judiciary Committee Website or on Youtube and link to the written testimony by clicking on the names below.

At 19 minutes, begin testimony by Martha Bryant, mother and RSN, BSN, from Amherst County, Virginia.

At 24:50 minutes, begin testimony of Carolyn Lahrmann, mother and former president of VOR, from Columbus, Ohio

At 32 minutes, begin testimony of Alison Barkoff, sister and co-chair, from the Consortium of Citizens with Disabilities.

At 38 minutes, begin testimony of Peter Kinzler, father and attorney, from Alexandria Virginia.

Comments to the U.S. Department of Justice on the "Integration Mandate"

The U.S. Department of Justice recently issued a request for comments, in response to Executive Order 13777, which requires federal agencies to evaluate and implement measures to lower regulatory burdens on the American people. The Executive Order directs each agency's Regulatory Reform Task Force to identify regulatory actions that do the following:

• Eliminate jobs, or inhibit job creation;
• are outdated, unnecessary, or ineffective;
• impose costs that exceed benefits;
• create a serious inconsistency or otherwise interfere with regulatory reform initiatives and policies;
• are inconsistent with the requirements of the Information Quality Act (section 515 of the Treasury and General Government Appropriations Act, 2001, 44 U.S.C. 3516 note), or OMB Information Quality Guidance issued pursuant to that provision, in particular those regulations that rely in whole or in part on data, information, or methods that are not publicly available or that are insufficiently transparent to meet the standard for reproducibility; or
• derive from or implement Executive Orders or other Presidential directives that have been subsequently rescinded or substantially modified.

VOR, a national non profit organization that advocates for high quality care and the human rights of individuals with intellectual and developmental disabilities (I/DD), submitted comments on August 14, 2017, to the DOJ on policies regarding enforcement of the “Integration Mandate” of the Americans with Disabilities Act and the 1999 U.S. Supreme Court Olmstead decision. VOR believes policies from the DOJ wrongly impose an interpretation of the Integration Mandate that denies individual choice and need.

These comments are available on the VOR Website. The supporting references have been omitted here, but can be found in the PDF version of the document.

Americans with Disabilities Act regulations address General Prohibitions against Discrimination under the ADA. 

VOR Olmstead Resources

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August 14, 2017

Department of Justice Request for Public Comment: Enforcing the Regulatory Reform Agenda; Department of Justice Task Force on Regulatory Reform Under E.O. 13777

Introduction

VOR is a national non profit organization that advocates for high quality care and the human rights of individuals with intellectual and developmental disabilities (I/DD). Our members are primarily family members and guardians of individuals with I/DD who access state Medicaid long-term services and supports. Many of our members are on the severe and profound end of the disability continuum, some functioning at the level of a small child or infant. Their intellectual disabilities are often accompanied by complex physical and medical conditions and behavioral concerns. The disabilities of these individuals are such that many require and choose 24-hour supervision and nursing care and community integration found in Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and similar facilities.

Regulatory Burden - DOJ’s Integration Mandate

DOJ Statement on Enforcement of the Integration Mandate of Title II of the ADA and Olmstead, June 22, 2011

DOJ Statement on Application of the Integration Mandate of Title II of the ADA and Olmstead to State and Local Governments’ Employment Service Systems for Individuals with Disabilities, October 31, 2016

The DOJ interpretation, enforcement, and application of the ADA and Olmstead wrongly impose an “Integration Mandate” that denies individual choice and need. The adverse affects of this policy is manifold:

1. Health and safety are placed at risk when DOJ’s “integration mandate” forces individuals against choice and need out of ICF/IID homes into small group homes without appropriate services, supports, and supervision. This policy acts counter to Olmstead.
2. For some individuals, community integration is placed at risk in a four person group home with only a 1:4 staffing ratio. Small settings do not have sufficient staffing and transportation resources to accompany severely and profoundly intellectually disabled individuals on outings. These individuals require 1:1 supervision in the community, and for some, nursing support.
3. Facility-based supported employment and day programming are placed at risk leaving individuals with disabilities who cannot perform competitive work without opportunities for skill development.
4. ICF/IID, sheltered workshop, and day programs employ experts in the care and treatment of I/DD. The development of this expertise and access to it is lost as congregate settings are closed.
5. The per person cost of care increases dramatically as congregate care is shut down as sharing of resources is limited in small HCBS waiver settings. Nursing, therapy, adaptive equipment, direct care, and transportation are shared in an ICF/IID. These services are separately contracted on an individual basis in waiver settings. Forcing complex needs people into community settings against choice has adversely affected Home and Community-Based Services (HCBS) Wait Lists . 
6. Access to appropriate medical care can be difficult to obtain in scattered small settings as few medical practitioners have experience in treating individuals with severe and profound I/DD.
7. Forcing individuals with I/DD into competitive employment against choice puts individuals with I/DD in risky circumstances as many private businesses are not set up to address maladaptive behaviors, personal care, special feeding needs, and medication administration. Employees of private businesses are placed in difficult situations if they are not trained to handle violent and other maladaptive behaviors, health issues such as seizures, and personal care needs.
8. Costly lawsuits brought by DOJ and Protection & Advocacy agencies (P&A) against state governments have cost millions in taxpayer dollars and resources at the federal and state level to litigate and defend against. Families fighting these lawsuits must fundraise to hire legal representation to ensure their loved ones interests are protected. The cost and worry these lawsuit inflict on law abiding Americans who already face a difficult road in life protecting their intellectually disabled loved ones is inhumane.

DOJ’s notion of an “integration mandate” emanates from: 28 C.F.R. § 35.130(d) A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities. A mandate conflicts with the requirement that integrated placements are “appropriate to the needs of qualified individuals with disabilities.”

The disability population is complex and diverse encompassing mental, intellectual, physical, medical and behavioral conditions. The Olmstead Court recognized this diversity, and therefore, cautioned and warned of the need for a range of settings, including institutional settings, throughout its majority and concurring opinions. Justice Ginsburg stated,

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle and benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead 601-602

Therefore, the notion of an “integration mandate” defies Olmstead. It also defies DOJ regulation:

• 28 CFR 35.130(e)(1) 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.
• 28 C.F.R § 35.130 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. 

DOJ regulation defines an “integrated setting appropriate to the needs of an individual” to be:

28 C.F.R. Pt. 35, App. A (2010) (addressing § 35.130) 

i.e., in a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible, and that persons with disabilities must be provided the option of declining to accept a particular accommodation

DOJ’s June 22, 2011 guidance states that integrated residential settings are “scattered-site housing with supportive services” and that congregate settings are “segregated.”

DOJ’s October 31, 2016 guidance states that integrated work settings allow individuals “to work in a typical job in the community like individuals without disabilities” and that sheltered workshops are “segregated.”

DOJ fails to understand that just as beauty is in the eye of the beholder, integration is as well.

• A profoundly intellectually disabled young man in a wheelchair who has no concept of hazards cannot maneuver his wheelchair independently in the community, but can on his own in a large ICF/IID with long, wide hallways, no stairs to fall down, lots of areas to visit, and plenty of caregivers, visiting family members, and volunteers to keep a watchful eye on him. In a small community setting, this young man would find himself bumping into walls and furniture with his wheelchair.
• A severely autistic man prone to violent behaviors and elopement may be a danger to himself and others in a small setting. But, he may find more freedom and independence in a large facility with more staff on hand to support his behaviors, more places to visit and activities to engage in, and in many cases, large grounds on which to take recreation where he cannot harm others.
• A severely intellectually disabled woman with quadriplegia and a ventilator likely will not have sufficient staff to take her on outings if she lives in a four person group home with the typical 1:4 staffing ratio. She requires 1:1 supervision in the community and possibly nursing support.
• A severely autistic young lady with maladaptive behaviors may find a full work-day of supported employment daily in a sheltered workshop. This young lady may be too costly to employ in a community business and her behaviors too hazardous to herself and others which may severely limit the number of hours she is employable in the private sector.

Therefore, for some, a large ICF/IID provides more independence, freedom and community integration than a small community group home, and a sheltered workshop provides more hours of employment and integration than a competitive job. Integration is in the eye of the beholder.

It is for these reasons the Olmstead Court held,

"Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States’ need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States’ obligation to administer services with an even hand.” Olmstead at 597 (Emphasis added.)

Informed Choice

DOJ’s guidance asserts a concept of “informed choice” and suggests that individuals and families have historically not acted in an informed way when they have chosen institutional placements. But, the ADA and Olmstead do not qualify the term “choice” by defining an informed or ill-informed choice. Doing so, would negate choice.

Throughout Olmstead’s majority and concurring opinions, the justices state the need for a range of facilities, recognize the right of an individual to oppose an accommodation, and establish a three-pronged test for community placement that incorporates individual need and choice. In doing so, the Olmstead Court emphasizes the rights of the individual with disabilities and the importance of health and safety. Olmstead states,

"For other individuals, no placement outside the institution may ever be appropriate." Olmstead 605 

“Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times–perhaps in the short run, perhaps in the long run–for the risks and exposure of the less protective environment of community settings”; for these persons, “institutional settings are needed and must remain available.” Olmstead 605

“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.” Olmstead 605

“In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.” Justice Kennedy, Concurring Opinion, Olmstead 610

DOJ Actions

DOJ brings what it terms “Olmstead actions” against states to enforce its “integration mandate.” These actions are ostensibly aimed at expanding HCBS services, but have the effect of reducing the ICF/IID and sheltered workshop choice. To the extent that the DOJ is successful in intimidating states to force closures of ICFs/IID and sheltered workshops, these actions also have the effect of fundamentally altering a states’ service system, overriding the executive and legislative decisions of elected officials and the placement decisions of private citizens. Justice Ginsburg stated,

"Accordingly, we further hold that the Court of Appeals’ remand instruction was unduly restrictive. In evaluating a State’s fundamental-alteration defense, the District Court must consider, in view of the resources available to the State, not only the cost of providing community-based care to the litigants, but also the range of services the State provides others with mental disabilities, and the State’s obligation to mete out those services equitably." Olmstead 597 (Emphasis added.)

States are in a better position to know the needs of their fragile constituents, and therefore, federalism calls for decisions concerning the balance of service systems to be deferred to states to ensure the effective, compassionate, and efficient use of resources.

DOJ enforcement in relation to the make-up of state developmental disabilities (DD) service systems ignores the reality that these systems are overwhelmingly balanced in favor of community services. Exhibit A shows that ICF/IID care makes up just a fraction of DD service system capacity. Most states do not notify families of the ICF/IID choice in defiance of federal Medicaid law for fear of a DOJ or P&A action. As noted, the loss of a vital choice on the continuum of care has contributed to large HCBS wait lists that have grown dramatically for the reasons stated in Exhibit A.

Historically, individuals and their families accessing services at targeted facilities are overwhelmingly opposed to a DOJ action. Such actions impose an intense burden on families both in terms of emotional hardship, worry, and financial stress. Important accommodations which make life manageable for individuals with I/DD and their caregivers are callously put at risk with DOJ actions. Families must fundraise and expend significant resources to defend against DOJ actions as publicly funded legal assistance through the P&A program is not available from highly conflicted advocates who only advocate for people who can handle and benefit from community services. District Court Judge Leon Holmes best described the position of families in his Dismissal Order of a DOJ action,

“Most lawsuits are brought by persons who believe their rights have been violated. Not this one...All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States. Thus, the United States [Department of Justice] is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons – through their parents and guardians disagree.” US. v. Arkansas, 4:09-CV-0033, Dismissal Order, June 8, 2011

Ignoring the careful and loving decision-making of families has come with tragic consequences. Justice Kennedy warned against just this in his concurring opinion in Olmstead,

“It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.” Justice Kennedy, Concurring Opinion, Olmstead 610

The DOJ settlement agreement in Georgia was paused due to the high number of deaths resulting from DOJ’s integration mandate. Recent tragedies in Virginia connected to a DOJ settlement agreement have also caused alarm. See Exhibit B for a discussion on abuse, neglect, and death resulting from deinstitutionalization.

The threat of DOJ interference in a state can have serious ramifications for individuals with I/DD. P&A and DOJ activity in Illinois led to deinstitutionalization efforts, but the state was unable to fund and provide appropriate community supports. A recent Chicago Tribune investigation revealed that widespread abuse was occurring in Illinois’ community system while the state’s P&A was either unaware or did not address issues. See Exhibit B. It took newspaper reporters to bring the rampant mistreatment to light. Illinois’ P&A failed the fragile clients of Illinois’ community system. DOJ’s Statements of Interest filed in Illinois P&A actions helped to drive deinstitutionalization there before an adequate community service system was put in place.

Protection & Advocacy

VOR wishes to correct DOJ’s citation of the Protection & Advocacy statute in its June 22, 2011 guidance. The statute states, “the State shall have in effect a system to protect and advocate the rights of individuals with developmental disabilities.” 42 USC 15043. DOJ leaves out the qualifier “developmental” in its guidance.

Conclusion

VOR requests DOJ to honor individuals in their application of the ADA and Olmstead. Congress and the Olmstead Court did not mean for disability law to be feared by individuals with disabilities, as DOJ’s interpretation yields. Enabling community services for those who can handle and benefit from them should not come at the expense of more vulnerable individuals with I/DD who need and choose congregate care.

Understanding Guardianship Part 2: The Michigan "Preventing Guardianship" Project, 2002 - 2004

Two of the goals of the 1998  Michigan “Task Force on Guardianship and Conservatorship…” were seemingly contradictory:  to reduce the number of unnecessary guardianships and  conservatorships and to guarantee “an appropriate number of qualified and concerned guardians”. The Task Force report did not include how the Task Force would ascertain that a guardianship was unnecessary or the number of guardianships that were actually found to be unnecessary in the course of reporting on guardianships in Michigan. 

State Courts complain about the lack of guardians available for people who have no willing friend or family member to take on the responsibility of guardianship, at which time the courts are impelled to turn to professional state or corporate guardians. It is my guess (I’m still looking for definite answers to this question), that there are more abuses in the public guardian system because the relationship between public or state guardians and their wards is less personal and is more fraught with conflicts of interest. Could it be that the aggressive approach of disability advocates to discourage potential family guardians from seeking guardianship has the effect of pushing courts into using less desirable professional and state guardians? By always speaking of guardianship in a pejorative way and by portraying the desire to protect a disabled family member with guardianship as wanting to take away the person's rights, advocates may exacerbate the problem of state courts not having enough guardians available to protect people who have no one else to help them. 

Here is an example of a campaign in Michigan that was supposedly launched to reduce guardianships but was turned on families and others close to people with developmental disabilities to shame them into never seeking the protections of guardianship.

Advocates for people with developmental disabilities, including Michigan Protection and Advocacy Services (MPAS) and the ARC Michigan, had been leading a long-term campaign to dissuade parents and other family members from using Michigan’s guardianship law to acquire decision-making authority for their developmentally disabled loved-ones who cannot make decisions for themselves. Some of the advocates’ activities were funded by the Michigan Developmental Disabilities Council with federal funds under the Developmental Disabilities Assistance and Bill of Rights Act (The DD Act).

From 2002 – 2004, the Michigan DD Council awarded a grant of $200,000 to Washtenaw Association for Community Advocacy (a local ARC chapter) and Michigan Protection and Advocacy Services for the “Preventing Guardianship” project. Although the stated purpose of the grant was to reduce the number of guardianships in Michigan, it was clear from the grant proposal that the project leaders philosophically opposed guardianship for people with developmental disabilities, even those with the most severe disabilities. Promoting their philosophy was central to the “Preventing Guardianship” project. 

Families were subjected to anti-guardianship activities, including public meetings that were supposedly held to give information on alternatives to guardianship, but were in reality for the purpose of proclaiming the evils of guardianship and shaming families into believing they would be depriving their loved ones of their civil rights by contemplating guardianship.  This is despite a Michigan guardianship law that protects developmentally disabled people from neglect, exploitation, and abuse. The law contains extensive protections against unwarranted and overly restrictive guardianships. By undermining state law and ignoring DD Act policy that makes developmentally disabled individuals and their families, not advocates, the primary decision makers, the DD Act-funded project may have resulted in making people with DD more vulnerable to neglect, exploitation, and abuse and families less equipped to protect them.

Public agencies and organizations were also targeted to persuade them to adopt practices and position statements that reject the use of guardianship and proclaim that it is a denial of civil rights. The expectation was that organizations that provide supports to people with developmental disabilities “…will change policies and adopt position statements that reflect an attitude and philosophy recognizing that guardianship is a denial of self-determined lives, civil rights, and that alternatives should be used.”

Parents and other family members were confused and often offended by the advocates unwillingness to acknowledge that some people with DD are not capable of making some or all decisions for themselves. Especially offensive was the accusation by advocates that family members seeking guardianship were allowing the worth of their loved-ones to be diminished by having a court declare their disabled family member incompetent. There were also attempts to exaggerate the difficulty of getting guardianship in the Probate Courts by statements from advocates who said the process was expensive, difficult, and exhausting and should be avoided at all costs. In fact, Michigan Probate Courts are usually family-friendly and most parents obtain guardianship without an attorney. Some Probate Courts offer help to families before a guardianship hearing that includes helpful references to the law and other educational materials on their Websites. As long as the person who needs a guardian is eligible for SSI, there are no court fees. 

Groups opposing guardianship by family members who accept federal funds under the DD Act with enthusiasm, usually reject DD Act policy that makes developmentally disabled individuals and their families, not advocates, the primary decision makers regarding the services and supports they receive. Ignoring DD Act policy and undermining state law that protects developmentally disabled people from neglect, exploitation, and abuse should not have been rewarded with DD Act funds

Michigan’s law for guardianship for people with developmental disabilities: start here and navigate forward to other sections by clicking on the navigation arrow.