What's old is new again: Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

This is a post from The DD News Blog for August 12, 2018. Not much has changed since then, with the exception of a worldwide pandemic that killed over a million people in the US and revealed serious inadequacies in the country's healthcare system. It also shined a light on the heroics of healthcare workers on the front lines of the pandemic, who, at first had the admiration and respect of the public. Later, they suffered abuse from the misdirected anger of a portion of the public stirred up by conspiracy theories about the virus and vaccines. The system of care for people with I/DD and their families also suffered with programs closing, some temporarily, but others permanently. Severe work shortages, especially among direct service professionals, hampered an already distressed system, seemingly on the verge of collapse. We seem to be back, but not quite, to where we were when the whole thing began. 

This is a good place to start, heading into a new year with the same old controversies that must be resolved if we are going to rebuild a fair system that includes recognition of the full range of people served and the diversity of needs.

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Sunday, August 12, 2018

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many I/DD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (I/DD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them.

To what extent is implementation of the Settings Rule improving the lives of people with I/DD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with I/DD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services.

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else.

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with I/DD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases.  [He currently serves as general counsel of the US Department of Health and Human Services and is on leave from the University of Michigan Law School] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.”

It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings.

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.

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

See also,

“Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)

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"

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

Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many IDD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (IDD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them. 

To what extent is implementation of the Settings Rule improving the lives of people with IDD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with IDD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services. 

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else. 

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with IDD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases. [This is the same Sam Bagenstos who is running for the Michigan Supreme Court in the November 2018 election.] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.” 

It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings. 

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.

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

See also, 

“Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

VOR documentation of "Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 2015 to Present" 

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)

Delaware DD Council Misconduct

A special investigation of the Delaware Developmental Disabilities Council by the State Auditor found violations of state, federal, and internal requirements. The investigation revealed mishandling of contracts, violations of travel and other policies, and preferential treatment of friends by the Executive Director [Pat Maichle].

But before going into the details of the investigation, it helps to know more about DD Councils in general and what their purpose is: 

State Developmental Disabilities Councils have been around for decades, but most families and people with disabilities are only vaguely aware of them, if at all. DD Councils are among several programs that are funded by the Developmental Disabilities and Bill of Rights Act. They are “…federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils are committed to advancing public policy and systems change that help these individuals gain more control over their lives." 

DD Councils seem to feel no obligation to represent individuals and families who disagree with the ideological positions taken by most DD Councils. Neverthless, DD Councils, as federally funded and sanctioned agencies, are influential in promoting their goals with state and federal government, without  ever acknowledging differences of opinion within the DD community. 

One of the more surprising facts about the DD Act is that it does not fund direct services to people with developmental disabilities. Funding for DD Act programs may incidentally provide services to people with disabilities and their families through, for instance, pilot programs or training and education, but funding is primarily focused on advocacy, “systems change”, research, and support for organizations and agencies that promote the goals of the DD Act.

The last time the DD Act was reauthorized was in the year 2000. Although the law was scheduled for reauthorization in 2007, Congress failed to take action. It has not taken a close look at the DD Act in eighteen years. Reauthorization is an occasion for Congress to review, investigate, and hold hearings on federal legislation to determine the effectiveness of the law, whether it is achieving the desired effects, and whether it should continue as is or be changed and improved. It is also a chance for people directly affected by the law and the general public to participate in advising Congress on their experiences and recommendations for change. Instead, the DD Act of 2000 remains unchanged, while appropriations are approved year after year without the benefit of more intensive scrutiny and oversight.

The Delaware DD Council

Here are the results of the Special Investigation of the DD Council in its driest form as outlined in the auditor's report:

“AOA [Auditor of Accounts] was able to substantiate or partially substantiate nine of ten allegations. Through the period under investigation, the Council failed to consistently follow State, federal, and internal procurement and travel rules.”

Contract deficiencies include:

• Contracts were awarded without following the required State RFP [Request for Proposal] procedures; 
• Contracts were awarded to contractors who failed to perform the work as required by the contracts; 
• Contracts did not include 40% match requirement; 
• Contractors did not submit required reports by the specified deadline; 
• Contracts were issued for purposes that did not align with a goal or objective of the State Plan; and 
• Contracts were not signed by the Council Chair. 

There were also travel violations: 

• The Council incurred $365 of travel related expenses above the cost of using Fleet services; 
• Travel requests did not have the proper approvals; and 
• Travelers did not follow Council reporting requirements upon return from the trip. 

"In addition, AOA found that the Director assisted one contractor [referred to as 'friends' later in the report] with applying for non-profit status and filing incorporation documents. This contractor was awarded one contract in Fiscal Year 2016, 8 months after their 501(c)(3) [non-profit] status was obtained. "

The report is fleshed out in other accounts such as this one from Delaware 105.9 FM News Talk by Rob Petree, 7/13/18:

• “AOA found evidence of two contracts in 2015 with a contractor whose work was heavily edited and corrected by Council staff to meet federal and internal reporting requirements. The contractor had acknowledged in several emails that the information provided was not correct, and then in 2017 the same contractor was awarded two more contracts.”
• “The Director would show preferential treatment to some contractors by waiving the match requirement, which requires that all contractors provide a match of 40-percent of federal funds, according to the investigation…Out of 23 contracts reviewed, eight had a match requirement of less than 40-percent and nine had a match requirement that was greater than 40-percent.”
• “The Council did not require contractors to submit itemized receipts or proof of how cash or alike matches were applied, according to the AOA's investigation.”
• “AOA was able to partially substantiate that of 18 trips attended by members of the Council, 15 were not approved on the record. “

So where is Pat Maichle now? She was the Executive Director of the DD Council for the period covered by the investigation. The Delaware DD Council is officially under the Delaware Department of Safety and Homeland Security (DSHS). According to a statement from DSHS, Maichle has been ”temporarily reassigned to the Office of the Secretary." 

This is not the first time that the Delaware DD Council and the Executive Director have faced criticism and local press coverage. Families Speaking Up! is a local grass roots disability group that works "to ensure that all voices are heard in the IDD debate...By eliminating options and choice we will see a 'one size fits all' service system. Such a system will not meet the individual needs of our adult children". 

Although FSU had disagreements with the DD Council, they were not expecting this reaction to their participation in a celebration of the 25th anniversiary of the ADA: 

“Delaware: Exclusion, Rather than Inclusion, Marks ADA 25th Anniversary”, 7/20/15 : “…Disability advocates from Families Speaking Up! were denied a display table at at an event celebrating the 25th anniversary of the Americans with Disabilities Act in Dover Delaware on July 18, 2015. When the group then arranged to share table space with Special Olympics, and attempted to display a sign from Families Speaking Up!, they were approached by Dover police officers with instructions to put the sign away. An officer said Families Speaking Up! had a 'difference of opinion' with the event’s organizers, according to a witness at the incident." The Dover ADA celebration was organized jointly by several Delaware groups and government-chartered councils, including the Developmental Disabilities Council.

Concerned about the events of the day, Lanny and Micki Edelsohn from FSU filed a complaint with the Delaware Attorney General’s office of Civil Rights and Public Trust. As a result of the efforts of Deputy Attorney General Allison Reardon and her staff at the Civil Rights division, they received a letter of apology from Pat Maichle, Senior Administrator of the Delaware Disabilities Council.

A letter of apology and later the reassignment of the Executive Director to another position within the DSHS seem like a slap on the wrist to the DD Council with little incentive to promote the accountability that people with disabilities and their families deserve. 

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See also The DD News Blog on The DD Act

From Delaware Online: "Audit: Disabilities council director violated state procurement and travel policies"  by Damian Giletto, 7/20/18

"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.

Diluting Guardianship Rights

In the VOR archives is a 2009 letter from Sam Golden, the Chair of VOR's Government Affairs Committee, to the American Bar Association about efforts to dilute the rights of legal guardians of people with profound developmental disabilities. 

Then, as now, government agencies and federally-funded advocates were attempting to circumvent the authority of court-appointed guardians to make decisions for their wards. In most of the examples cited in the letter, guardians were ignored or their authority challenged when the guardians decisions interfered with the policy agenda of the agency or advocacy organization, usually to close congregate facilities. For their own convenience, agencies and advocates decided that profoundly disabled individuals, who had already been determined to lack the capacity to make decisions or give informed consent, did in fact did have that capability. In many instances, they discussed placement options and other issues without the guardian being present and claimed to have divined the preferences of the profoundly disabled person.

Sam Golden passed away in 2016. Sam was a truly remarkable person and a good friend to many in VOR. You can read more about him at the VOR Website. 

For more on Diluting Guardianship Rights, see "Model law for guardianship restricts guardian rights to act on behalf of incapacitated individuals" Part 1 and Part 2.

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Diluting Guardianship Rights

TO: American Bar Association Commission on Law and Aging

RE: RECENT EFFORTS TO DILUTE THE RIGHTS OF LEGAL GUARDIANS OF PERSONS WITH PROFOUND DEVELOPMENTAL DISABILITIES. 

DATE: January 14, 2009

I represent VOR, a national advocacy organization representing people with developmental disabilities, and their families.

Nearly all of our members have family members with severe and profound mental retardation and related developmental disabilities. Our loved ones need substantial support in every aspect of life including walking, communicating, bathing, eating and toileting. They function at an infant or toddler’s level although fully grown; they also endure multiple disabilities, chronic medical conditions and/or behavioral challenges. Many also have seizure disorders, mental illness, visual or hearing impairments, or have a combination of these conditions.

In most cases, our loved ones and their peers have been adjudicated incompetent and a legal guardian has been appointed for them, usually a parent or close relative.

We have a serious concern which falls within the Commission’s work on legal issues relating to “capacity, guardianship and surrogate decision-making,” as well as within “disability and individual rights.”

As legal guardians for our adult family members with severe cognitive disabilities, we are facing unprecedented attacks on our legally appointed rights and responsibilities as legal guardians. Like never before, some advocacy organizations for persons with disabilities, some state officials, and even some federal entities, have infringed upon our ability to carry out our duties as guardians, or have otherwise worked to undermine our status as guardians. For example,

Illinois: In a December 2, 2008 letter to families, Lilia Teninty, Director of the Illinois Department of Human Services, writes: “I welcome the opportunity to address your question, ‘Does the Illinois DHS now ask an individual who has a legal guardian about his or her placement preference without the guardian being present?’, and my reference to the Nebraska Plan. As previously identified, we have a responsibility to recognize individual rights in exercising his or her personal choices and preferences, and with respect to this right, we believe that guardian permission is not required to discuss placement options.” (Emphasis added).

Nebraska: The referenced Nebraska plan is a July 2008 Settlement Agreement between the State of Nebraska and the U.S. Department of Justice. Instead of encouraging informed choice with regard to residential placement decisions, this federal settlement agreement instead suggests additional “education” in situations where legal guardians disagree with community placement: “Where family members and/or guardians have reservations about community placement, the State shall provide ongoing educational opportunities to such family members and/or guardians with regard to placement and programming alternatives and options.”

In New Jersey, Georgia, and Florida, and other states, advocates, some of whom are federally-funded, also visit ICFs/MR  residents to discuss placement options, without legal guardian permission. This sort of communication with our profoundly developmentally disabled family members/wards is no different, and no less offensive, than if state and federal advocates entered schools to talk to children, one-on-one, without their parents’ consent. [Intermediate Care Facilities for people with mental retardation - ICFs/MR - are now called  ICFs/IID for Individuals with Intellectual Disabilities]

Illinois: The federally-funded Illinois Council on DD published a “Blueprint for System Redesign in Illinois,” calling for the movement of people from ICF/MR settings over the objections and concerns of legal guardians, stating, “[t]heir objections should not circumvent the process.”

California: In 2002, the federally funded California Protection and Advocacy agency (PAI) filed its second lawsuit to close ICFs/MR, arguing in court against family/guardian intervention, stating, “As a matter of substantive law, parents and guardians of institutionalized persons have different and potentially conflicting interests on matters pertaining to their child’s or ward’s constitutional or statutory rights to liberty and due process.” PAI’s first lawsuit was filed despite overwhelming opposition by families and guardians. PAI’s first lawsuit closed two ICFs/MR and transferred 2,500 people to alternate settings leading to reports of abuse, neglect and death.

Wisconsin: The Wisconsin P&A filed a lawsuit on behalf of minor residents of ICFs/MR, notifying their parents (legal guardians) after the lawsuit was filed in case they “might be interested.”

Maine: A Maine P&A advocate counseled her mentally ill client, William, who was receiving inpatient psychiatric care, that his parents were a “negative force in his life” given their efforts to keep him “institutionalized” due to his severe mental illness. Her subsequent “victory” in winning his release was followed shortly by William murdering his mother.

Centers for Medicare and Medicaid Services (CMS): In 2007, CMS, an agency within the U.S. Department of Health and Human Services, published its official guidance to state governments for state Money Follows the Person programs. In this guide, CMS instructed states (not courts) to critique guardianship performance. VOR objected noting that the CMS MFP Instruction Guide,

“. . . directs states and CMS to critique and challenge the competency of each and every guardian, without regard to the existing judicial process in place, and without regard to statutory requirements relating to the role and responsibilities of guardians appointed by the individual’s state court. It further encourages states to pursue the removal of guardians, who in their standards (as directed by CMS) don’t measure up. Thus, CMS would usurp states’ guardianship authority. This is an unacceptable interference with states’ rights and would put every ward at risk of losing his or her appointed guardian.”

Developmental Disabilities Assistance and Bill of Rights Act (DD Act) Programs: The three federally created and authorized DD Act programs routinely ignore and disrespect legal guardian involvement and choice. Several examples of P&A disrespecting family/legal guardianship involvement were noted above. It is not surprising, then, that the national association for state P&As, the National Disability Rights Network, signed a letter to Congress which called families, many of whom are legal guardians, as “clueless.” In a related example, the National Association of State DD Councils proposed changes to the Act’s “primary decisionmaking” clause which would cut out completely the current legal role of family members and legal guardians of adults with developmental disabilities.

Although characterized as an attack on our rights as legal guardians, the real victims of these undermining actions are our fragile family members with severe and profound developmental disabilities, who depend on our compassion and insights to make sound decisions in their best interests. [Emphasis added] As recognized by the Supreme Court, “close relatives and guardians, both of whom likely have intimate knowledge of a mentally retarded person's abilities and experiences, have valuable insights that should be considered during the involuntary commitment process.” [Heller v. Doe, 509 U.S. 312, 329 (1993)].

Our love for our family members is what motivates our decisionmaking. When advocacy organizations, who have never even met our family members, work to undermine our legal decisionmaking authority, they are working toward an ideological end, whether or not in the best interest of our family members. Our fragile family members are mere pawns in their efforts to eliminate licensed facility care as one residential option for people with especially severe cognitive, physical and medical disabilities.

We respectfully request that the ABA Commission on Law and Aging and the ABA Commission on Mental and Physical Disability Law review our concerns and take action. We would welcome the opportunity to meet with you to further discuss this issue and explore ways that the ABA may help. Respected members of the legal community – from lawmakers, to attorneys, to judges – are in unique position to address this important issue.

Sincerely,

Sam Golden
Chair, VOR Government Affairs Committee

Michigan DD Council seeks public comment on 2017-2021 Five-Year Plan

from the Michigan DD Council: 
 
The Michigan Developmental Disabilities Council (MDDC) has drafted its 2017-2021 State Plan.

Goals and objectives are identified to improve the availability and quality of services and supports, to assure equal rights and opportunities, and to further community integration and inclusion for individuals with developmental disabilities and their families.  The State Plan provides the basic framework for how Council funds will be used and what activities the Council will be involved in.

We appreciate your time in providing comments and feedback. Please send any comments or thoughts you might have.  There are three (3 ) ways to provide feedback.

Email to:         MDHHS-DD-Council@michigan.gov

US Mail to:      Michigan Developmental Disabilities Council
                        5-year Plan Public Comment
                        c/o Tedra Jackson
                        320 S. Walnut
                        Lansing, MI 48913

Or via Survey Monkey by clicking here .

Additionally, there will be two days where the public can review the plan in-person at the DD Council Office. Friday, May 27th from 8:30am to 5:00pm and Wednesday, June 15th from 8:30am to 5:00pm. The DD Council office is located in the Lewis Cass Building, 320 S. Walnut, Lansing, MI 48913.

We will receive feedback until 12:00 PM Monday, June 27, 2016.

Thank you for your help as we plan for the Councils activities over the next five years. If you have any questions or need assistance please contact the Council office at 517-335-3158.

Link to DD Council 2017-2021 Five-Year Plan5 year

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For more information on the Michigan DD Council, see the 2015 Annual Report

The DD Act Purpose : Promoting DD Act Goals

This is an annotated version of the “purpose” of The Developmental Disabilities Assistance and Bill of Rights Act of 2000 with my comments. The way the purpose is stated affects the meaning and interpretation of the DD Act, for better and for worse. [See this section (Sec.101b) of The DD Act in its regular form and format here.]

PURPOSE.—The purpose of this title is to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs authorized under this title, including specifically—

[The overall purpose of the DD Act is to promote self-determination, independence, productivity, integration, and inclusion in community life for people with DD, to assure participation in the design of promotional activities by individuals and their families, and to assure that individuals and their families have access to services, supports, and other assistance that promote the purpose of the DD Act. The activities promoted are those stated by the federal mandate with the allocation of funds going to DD Act programs. The DD Act does not provide direct funding to pay for services to individuals or their families except when this occurs incidentally in DD Act program activities. The DD Act does not contemplate how the purpose of the Act applies to people with developmental disabilities who, because of their disabilities, are unable to achieve the goals that are being promoted.]

To continue, “…including specifically —”

State Councils on Developmental Disabilities in each State to engage in advocacy, capacity building, and systemic change activities that— 

• are consistent with the purpose described in this subsection and the policy described in subsection (c); and 
• contribute to a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system that includes needed community services, individualized supports, and other forms of assistance that promote self-determination for individuals with developmental disabilities and their families;    

[Note again, that the “comprehensive system” is to promote the goals described in The DD Act, without mention of the possibility that individual goals may differ from those described.]

Protection and Advocacy systems in each State to protect the legal and human rights of individuals with developmental disabilities;

University Centers for Excellence in Developmental Disabilities Education, Research, and Service— 

1. to provide interdisciplinary pre-service preparation and continuing education of students and fellows, which may include the preparation and continuing education of leadership, direct service, clinical, or other personnel to strengthen and increase the capacity of States and communities to achieve the purpose of this title;

2. to provide community services— 

• that provide training and technical assistance for individuals with developmental disabilities, their families, professionals, paraprofessionals, policy-makers, students, and other members of the community; and
• that may provide services, supports, and assistance for the persons described in clause (i) through demonstration and model activities;

3. to conduct research, which may include basic or applied research, evaluation, and the analysis of public policy in areas that affect or could affect, either positively or negatively, individuals with developmental disabilities and their families; and
 
4. to disseminate information related to activities undertaken to address the purpose of this title, especially dissemination of information that demonstrates that the network authorized under this subtitle is a national and international resource that includes specific substantive areas of expertise that may be accessed and applied in diverse settings and circumstances; and

Funding for— 

• national initiatives to collect necessary data on issues that are directly or indirectly relevant to the lives of individuals with developmental disabilities;
• technical assistance to entities who engage in or intend to engage in activities consistent with the purpose described in this subsection or the policy described in sub-section (c); and
• other nationally significant activities.

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While we are on the topic, here is a breakdown of funding for DD Act Programs for Fiscal Year 2014, just to give an approximate idea of the amount of federal money spent on DD Act programs:

(Dollars in millions) 

State Councils on Developmental Disabilities                                      $70.692

Developmental Disabilities Protection and Advocacy                             38.634

University Centers for Excellence in Developmental Disabilities            36.674

Projects of National Significance                                                              8.821

Total Developmental Disabilities Programs:   $154.821

Detailed budget information on DD Act programs is available on the Website for the Administration on Intellectual and developmental disabilities (AIDD).