VOR reply to Congress on the meaning of Olmstead, July 2018

Mary Lazare is the Principal Deputy Administrator and Acting Commissioner on Disabilities at the federal Administration for Community Living (ACL). Remarks that she made at the Autism Society of America 2018 National Conference in July set off an uproar among some disability advocates who claimed that she said she favored segregating people with disabilities. 

According to an article in Disability Scoop, "Talk Of Segregating People With Disabilities Alarms Members Of Congress" by Michelle Diament, 7/18/2018, "The lawmakers said they were told that Lazare said she believed the Supreme Court came to the wrong conclusion in the landmark Olmstead v. L.C. case, which affirmed the right of people with disabilities to access community-based living, and that she prefers segregated and institutional settings." The problem is that there is no complete transcript of her remarks, no recording of her remarks, and conflicting third-hand reports from people who claimed to hear the remarks or at least heard of them from other people. Her subsequent Tweet of Apology and Regret is ambiguous, but she does say "We also recognize Olmstead gives people the right to other choices [than 'community living']". That part is exactly right.

Three members of Congress wrote to the ACL wanting to know more about Lazare's remarks, but also revealing a misunderstanding of Olmstead that is consistent with a misinterpretation that some advocacy groups have been promoting since 1999. VOR wrote to the three lawmakers "to emphasize the need for ICFs/IID in a full continuum of care and to clarify the true meaning of Olmstead for these lawmakers and their associates."

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VOR Reply to Congressional Letter to the ACL

July 22, 2018

Representative Jan Schakowsky, 115th Congress, Illinois District 9
Representative Greg Harper, 115th Congress, Mississippi District 3
Representative Jim Langevin, 115th Congress, Rhode Island District 2

Cc:
Lance Robertson, Administrator, Administration for Community Living
Mary Lazare, Principal Deputy Administrator, Administration for Community Living

Dear Representatives Schakowsky, Harper, and Langevin:

We are writing in response to your July 13th letter to Administrator Lance Robertson of the Administration for Community Living (ACL) regarding comments made by Principal Deputy Administrator Mary Lazare at the recent ASA [Autism Society of America] Conference. As there is no actual record of Ms. Lazare’s comments, we can only conclude that some of her statements deviated from the past positions expressed by the ACL, which have held that everyone does better in the community. Since the conference, accusations have flown around the internet, accusing the ACL of trying to re-institutionalize everyone and reverse the course of the last 30 years. We are concerned by the level of anger and hyperbole to which this issue has been raised.

Our concerns are legitimate, as our organization has been mischaracterized in many of these online diatribes. VOR is a national non-profit organization, founded in 1983 by families of individuals with intellectual disabilities (IDD). Many of our members have loved ones with severe/profound intellectual disabilities or behavioral problems. Many are non-verbal, non-ambulatory, have PICA or self-injurious behaviors, are subject to frequent seizures, or are medically fragile. Some families have loved ones with far less extreme disabilities, but feel that their needs are not being properly addressed by our health care system. VOR advocates for a full continuum of care, respecting the rights of all to the level of care that is most appropriate to their needs. We support the goal of community integration for those who desire inclusion, but we also support the need for high quality care, comfort and stability offered by Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) for those who have higher levels of need. We advocate for choice, and for supporting a full range of options to meet the diverse needs and goals of this population. Unlike other advocacy groups, VOR does not rely on government grants for funding. We are self-supported by membership dues and donations.

In response to the uproar about Ms. Lazare’s purported comments and your letter to the ACL, we are concerned that the 1999 Olmstead Decision continues to be misrepresented by advocates and by members of Congress. Olmstead is a well-balanced decision, supporting the ideal of providing access to the most integrated setting, but admitting that for some, the most integrated setting may be an “institution” (ICF/IID). The justices recognized the need to support ICFs/IID as part of a full continuum of services. The balance of Olmstead has been overlooked or ignored by many who quote only the passages about supporting what has become a mandate for integration-for-all.

Please read the accompanying document for further reference about the full meaning of Olmstead.

For years, our families have been told that their loved ones can receive the same level of support in HCBS waiver settings. We disagree. ICFs/IID are a vital component of our safety net. They are well regulated and must meet rigorous standards to qualify for certification from CMS. The current CMS State Operations Manual for ICFs/IID, Appendix J, contains 247 pages of requirements and protocols for treatment. There is no equivalent for HCBS waiver settings. While the level of service provided by ICFs/IID are not appropriate to most persons with IDD, they are vital to those with high levels of need.

In January, 2018 the HHS Office of the Inspector General, the ACL, and the HHS Office of Civil Rights issued a joint report addressing the under-reporting of critical incidents (abuse and neglect) of individuals with intellectual disabilities in HCBS waiver settings. This followed a November 21, 2016 series “Suffering in Secret” by the Chicago Tribunei and a 2011-2012 series “Abused and Used” in the NY Times. Just two days ago, the Auditor General of the State of Illinois issued a report on the performance of DHS oversight on the state’s CILA (group home) program, which found systemic failures in Illinois’ licensing and oversight of taxpayer-funded group homes for adults with disabilities. Even more distressing are the facts in the case of Georgia earlier this decade. A determination by the U. S. Department of Justice led the state to closing many of its ICFs/IID, without ensuring that the HCBS system was prepared to handle the medically fragile IDD population. The consequences were tragic. Over the years that ensued, many people died. A March, 2015 article in the Augusta Chronicle reported that 500 individuals died in group homes in the previous year.

Our purpose in this letter is not to point fingers or to say that one form of care is better than another. It is to say that the system as a whole needs to be re-evaluated, that we need to do better with the resources we have and build up every asset and resource we have. We need to stop diverting time, energy, and funds on ideologies and on committees and organizations that serve only a portion of our IDD population and devote our resources to direct care of individuals, sufficient wages for Direct Support Professionals, monitoring our system for abuse, neglect, and misuse of funds, moving people from the waiting list to appropriate services, and strengthening all of our existing forms of residential care, services, and employment opportunities.

The time has come to drop the dogmas that divide us and learn to support each other, to work to address the needs of all of our members and their families. Our waiting lists are too long. Too many of our people are underserved. Too many of our people are not receiving the right level of services and supports. Too much money is being wasted, spent on oversight agencies that fail to provide oversight or being diverted to lobbying groups that support their own self-interest instead of the interests of those they are tasked to serve.

Thank you,

Hugo Dwyer – Executive Director, VOR
Joanne St. Amand – President, VOR

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See also, 

• "Ensuring Beneficiary Health and Safety in Group Homes..."
• "Suffering in Secret: Illinois hides abuse and neglect of adults with disabilities"
• New York Times, 2011 - 2012: "Abused and Used"
• Illinois: "Performance Audit of the July 2018 DHS Oversight of the CILA [Group Home] Program"
• Georgia: "Girl’s death among 500 in one year in community care"

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

U.S. Department of Health and Human Services finds group home residents at risk of serious harm

In January 2018, the U.S. Department of Health and Human Services issued a report with several other agencies "to identify instances in which the State agencies that administer the State Medicaid program did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities who reside in group homes." [page 3 of the Report] The Federal waiver refers to Home and Community Based Services (HCBS) that are provided to people with developmental and intellectual disabilities who live in community settings rather than in institutions such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). Although blanket assertions are often made that living in community settings is superior in every way to living in an ICF/IID, the safety and oversight of community group home settings are
 being questioned in this report. 

The following is a summary of the report with comments from VOR, a national nonprofit organizations that advocates for high quality care and human rights for all people with intellectual and developmental disabilities. Many VOR members have family members who are residents of ICFs/IID or have needs similar to this population.

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Joint Report from U.S. Department of Health and Human Services’ Office of Inspector General (OIG), Administration for Community Living (ACL), and Office for Civil Rights (OCR): 

[This was published in the 2018 Spring edition of the VOR print newsletter , The Voice.]

In January of 2018. three agencies operated by the U.S. Department of Health and Human Services, acknowledged systemic shortcomings in protecting residents of HCBS waiver group homes from incidents of abuse and neglect. The Office of the Inspector General (OIG) determined that up to 99 percent of these critical incidents were not reported to the appropriate law enforcement or state agencies as required. The report stated, “Group Home beneficiaries are at risk of serious harm. OIG found that health and safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries at risk of serious harm. These are not isolated incidents but a systemic problem – 49 States had media reports of health and safety problems in group homes.”

The report grew out of investigations into under-reporting of critical incidents by group home providers in Connecticut, Massachusetts, and Maine that had been conducted by the OIG in 2015. The reports found drastic under-reporting of incidents resulting in trips to the emergency room and/or hospitalizations by group home providers. Concurrent with those investigations, the Inspector General also looked into critical incident reporting by ICF’s in NY State. That investigation determined that NY’s ICF’s had an excellent record of reporting incidents, and that no actions or recommendations were necessary.

OIG highlighted under-reporting critical incidents of abuse and neglect in privately operated group homes, including “deaths, physical and sexual assaults, suicide attempts, unplanned hospitalizations, near drowning, missing persons, and serious injuries. Critical incidents requiring a minor level of review generally include suspected verbal or emotional abuse, theft, and property damage. For critical incidents that involve suspected abuse or neglect, the HCBS waiver and State regulations also require mandated reporting.” It found that in the states under study, “the State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities.”

The report identified four Compliance Oversight Components that “help ensure that beneficiary health, safety, and civil rights are adequately protected, that provider and service agencies operate under appropriate accountability mechanisms, and that public services are delivered consistent with funding expectations.”
1. Reliable incident management and investigation processes;
2. Audit protocols that ensure compliance with reporting, review, and response requirements;
3. Effective mortality reviews of unexpected deaths
4. Quality assurance mechanisms that ensure the delivery and fiscal integrity of appropriate community-based services.

In conclusion, the three agencies proposed that the Center for Medicare and Medicaid Services (CMS):
1. Encourage States to implement comprehensive compliance oversight systems for group homes, such as the Model Practices, and regularly report their findings to CMS;
2. Form a “SWAT” team to address, in a timely manner, systemic problems in State implementation of and compliance with health and safety oversight systems for group homes
3. Take immediate action in response to serious health and safety findings, for group homes using the authority under 42 CFR § 441.304(g).

Comments: Most families who have signed the HCBS Waiver would have had reasonable expectations that the four oversight components listed above were in place all along. The first three of these components are mandatory licensing requirements of Intermediate Care Facilities. As for the “SWAT” teams, isn’t that the job that has been expected of Protection and Advocacy agencies in each state? If not, then what is expected of them by HHS and CMS? And why do these agencies tell us that our loved ones can receive the same level of care in group homes that they receive in ICF’s, and encourage us to leave the ICF’s, when they know that these problems remain unchecked in the HCBS waiver system?

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See also, "Feds Urge Steps To Make Group Homes Safer" by Shaun Heasley, Disability Scoop, 6/29/18.