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. 

Justice Kennedy - A Moderating Influence for Choice in the 1999 Olmstead Decision

VOR is a national nonprofit advocacy organization that has for 35 years supported the right of individuals with intellectual and developmental disabilities (I/DD) to receive services and supports according to their individual choice and need, regardless of setting.

Below is a post from the VOR FaceBook page, 6/27/18, commenting on Justice Kennedy's resignation from the Supreme Court and his importance as a moderating influence on the 1999 Olmstead decision. 

Many federally funded advocacy groups and agencies have misinterpreted Olmstead as a mandate for "Community Integration for Everyone" . In Olmstead, the Supreme Court did not prohibit institutional care for those who need it or attempt to define or delineate the types of settings that are permitted or prohibited under the Americans with Disabilities Act. To the contrary, Olmstead recognized the need for States to maintain a range of facilities for the diverse needs of persons with developmental disabilities: "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 v. L.C., 527 U.S. 581, 597 (emphasis added) 

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VOR comment on the resignation of Justice Kennedy:

With Justice Kennedy's resignation as a Supreme Court justice, I wanted to post part of the Olmstead Decision ruling, that also quotes part of the Amicus brief that VOR filed at that time. The Olmstead Ruling ensures choice for our individuals to live in the least restrictive environment for their needs. It does NOT mean everyone has to live in a community setting.

Here is part of the ruling, and something we need to continue to share with legislators, some who still do not know and understand the real meaning of Olmstead.

"However, a majority of Justices in Olmstead also recognized an ongoing role for publicly and privately operated institutions: 'We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.'" Id. at 601-602.

A plurality of Justices noted: “[N]o placement outside the institution may ever be appropriate . . . ‘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’” (quoting Amicus Curiae Brief for the American Psychiatric Association, et al, [including VOR]). “As already observed [by the majority], the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing on a case-by-case basis, that setting may be an institution’[quoting VOR’s Amici Curiae brief].” Id. at 605.

Justice Kennedy noted in his concurring opinion, “It would be unreasonable, it would be a tragic event, then, were the Americans 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.” Id. at 610."

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See also, VOR Olmstead Resources.

VOR comments on the 17th (2016) anniversary of Olmstead:

"Recently, the Department of Justice (DOJ), and the Administration for Community Living (ACL) issued press releases celebrating the 17th Anniversary of the Olmstead decision. VOR shares their view that there is much to celebrate in opening doors to community living for people with intellectual and developmental disabilities (I/DD) who are able and wish to take advantage of such opportunities. Unfortunately, their ideological preoccupation with one key part of Olmstead, community integration, at the expense of the other key part, choice, has reduced options for all people with I/DD. This crimped and, VOR would submit, inaccurate application of the plain language of Olmstead has done significant harm to many of our most disabled citizens.

"By insisting that all people with I/DD live and work in the community, the DOJ and ACL are treating people with I/DD as a monolithic group, not as the individuals they are. DOJ and ACL are substituting the wishes of the government for that of the person with I/DD or, where relevant, the legal guardian. While their policies have opened doors for the less severely disabled, they have closed important doors for the more severely disabled. Many of these individuals have lifelong needs that require a very high level of care, the kind often found only in public and private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID), sheltered workshops, and facility-based day programs."

2018 Together for Choice Conference, Chicago, IL

2018 Together for Choice Conference

October 17-19, 2018

Misericordia Home

6300 N. Ridge Ave. 

Chicago, IL 60660 

Join us to advance the rights of individuals with intellectual and developmental disabilities to live, work and thrive in quality communities and settings of their choice!

Registration is now open. See the Together for Choice Conference Page

Please note that this is a busy convention season in Chicago, so reserve your hotel early. We have a limited block of rooms reserved at the Hilton Chicago, which are available on a first-come, first-serve basis. We will provide transportation between the hotel and conference venues on Wednesday, October 17 and Thursday, October 18. We will offer transportation only to the conference at Misericordia Home on Friday, October 19.

If you need assistance reserving a room at a hotel other than the Hilton Chicago or have other conference inquiries, please contact Jonathan Neidorf at jonathann@misericordia.com or (773) 273-4716.

Together for Choice is a national grassroots advocacy organization formally incorporated in 2017 with over 800 members in 47 states. Our mission is to protect and advance the right of individuals with intellectual and developmental disabilities (I/DD) to live, work, and thrive in communities and settings of their choice. We work with national networks, self-advocates, families, and service providers to advance choice, quality, and increased resources for the I/DD population. Since our incorporation, we have been educating the public and governmental officials on the need for Medicaid funding of choice-based housing and employment/developmental training models, as well as increased resources at the federal and state levels to ensure quality services. Our continued focus is to develop policy reform initiatives addressing the myriad of I/DD community needs.

We look forward to seeing you in October!

Together for Choice Team

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Preliminary agenda:

Wednesday, October 17: Opening Reception in Downtown Chicago (venue to be announced)

At our opening reception, you will enjoy a light dinner and cocktails while networking with other advocates of choice for individuals with intellectual and developmental disabilities (I/DD). Transportation will be provided to and from this venue for those staying at the Hilton Chicago.

Thursday, October 18

Full Day of Conference Programming at Misericordia Home

​You are invited to a full day of conference programming on Misericordia Home's campus in Chicago. The day's programming will be an opportunity for participants to hear from and engage in lively conversation with like-minded advocates for residential, work, and day programming choice for individuals with I/DD. Topics of discussion will include regulations around Home and Community Based Services (HCBS), as well as the future of specialized wages under Section 14(c) of the Fair Labor Standards Act (FLSA).

​We will also offer tours of Misericordia Home's campus, which provides a unique array of services designed to support a broad spectrum of needs.

​David Axelrod will be our keynote speaker during lunch. Mr. Axelrod, a 40-year veteran of American politics, is the former Chief Strategist and Senior Advisor to President Barack Obama. He currently serves as the director of the University of Chicago's non-partisan Institute of Politics, as a senior political commentator for CNN, and as the host of The Axe Files, a top-rated podcast jointly produced by CNN and his Institute.

​You will ​have the opportunity to hear from Together for Choice board members, all of whom have worked extensively to improve the lives of individuals with I/DD, both professionally and for their loved ones. They will discuss recent developments in their work and the direction of Together for Choice.

​This session will be followed by a cocktail hour, entertainment by Misericordia's HeartBreakers dance team, and dinner on Misericordia Home's campus with more opportunities for networking. Transportation will be provided from the Hilton Chicago to Misericordia Home in the morning and back after dinner.

​Friday, October 19

Half Day of Conference Programming at Misericordia Home

​Friday’s conference at Misericordia Home will offer an opportunity for presenters and conference attendees to share best practices related to housing models, micro-enterprise work opportunities, and the DSP workforce crisis. A wrap-up discussion will take place at noon followed by lunch. We will offer off-campus tours of Misericordia Home's group homes in the afternoon.

People with severe IDD and those with Serious Mental Illness experience similar barriers to treatment and care

This is a talk by D.J. Jaffe from MentalIllnessPolicy.org on barriers to treatment for people with serious mental illness. It was presented to the National Conference for Behavioral Health in Washington, D.C. in April 2018. Jaffe is the brother-in-law of a woman with schizophrenia.

According to the Website, “Mental Illness Policy Org. was founded in 2011 to provide unbiased and easy-to-access information for the media and policy makers about the care and treatment of people with serious and persistent mental illness. The issues facing the seriously mentally ill differ from the problems that affect the much broader population of people who have issues like anxiety and mild depression. The needs of the seriously ill often get lost in the larger dialogue about mental health. Being honest about this population requires addressing difficult issues like violence and involuntary treatment, issues many organizations prefer to avoid.”

Of course there are differences between people with severe mental illness and people with intellectual and developmental disabilities (IDD), but there are some striking similarities in the barriers to appropriate care and treatment for both populations. Those with severe and profound IDD also “get lost in the larger dialogue…” about people with disabilities. There is a reluctance to acknowledge the severity of these disabilities for fear of stigmatizing the entire population of people with disabilities, not to mention the profound effect these disabilities have on families and caregivers. To be sure, we are talking about a small but significant minority in both populations whose needs cannot be dismissed or swept away by ignoring reality or by wishful thinking.

Here are a few excerpts from Jaffe’s talk that caught my attention:

“We fail the seriously mentally ill when we try to convince government that it is stigma rather than lack of services that presents the major barrier to care for the seriously mentally ill”

“…when we mislead about violence, after incidents like Parkland, Virginia Tech, Aurora Colorado, we pull out our most popular claim: the mentally ill are no more violent than others. Nonsense. The untreated seriously mentally ill are more violent than others and …we know it… We fail the seriously mentally ill when we try to hide that because we prevent solutions. “

“If we really want to reduce stigma, we have to reduce the violence.”

“The police step in when one condition is met - the mental health system fails.”

“…We mislead officials into thinking we should spend more improving mental health and mental wellness in the masses rather than on treating the seriously ill. As a result of our advocacy the ability to get care has largely become inversely related to need. The least seriously ill are going to the head of the line and the most seriously ill are going to jails, they’re going to shelters, they’re going to prisons, and they are going to morgues.”

“Funds have been moving from state hospitals, which by definition serve the seriously ill, to community programs…but that’s not where patients are moving. Patients are moving from hospitals, which are going way down, to jails which are going way up. But we in the industry still claim that if we reduce hospitals we will reduce institutionalization. That has nothing to do with reality.”

“We have to make it easier for people to get treatment before they become a danger to self or others rather than preserving laws that require them to become a danger to self or others… We have to stand up against Bazelon, Protection and Advocacy, the ACLU…and others who believe being psychotic, delusional, hallucinating is a right to be protected rather than an illness to be treated…”

So-called evidence-based programs are “generated by the promoters of the treatments who want us to ignore their conflicts of interest…”

“The seriously mentally ill are being shunned and shut out of the engagement”

On stigma: “Any mom of somebody with serious mental illness, any social worker who works [with the seriously mentally ill]..knows that the biggest barrier to care is there’s no services available…”

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D.J. Jaffe's talk on Youtube

"Insane Consequences: How the Mental Health Industry Fails the Seriously Mentally Ill" by D.J. Jaffe

Review of "Insane Consequences" by Pete Earley

Delaware: The McNesby Act would ensure full funding of I/DD services

From the Ability Network of Delaware

The Michael McNesby Full Funding for Adults with I/DD Act (HB 104) will ensure that funding for services is brought up to levels recommended by the [Delaware] Department of Health and Social Services over the next 3 years.

Currently, funding is inadequate, which stresses the entire system and could put adults receiving services in danger. The lack of proper funding means that the Direct Support Professionals that deliver services are underpaid, which leads to employee turnover, which can diminish the quality of the care.

The McNesby Act will deliver $9 million in state funding to programs for adults with intellectual and developmental disabilities in the next state budget.