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.

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

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

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

Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. VOR supports the expansion of quality community-based service options; it opposes the elimination of the specialized facility-based (institutional) option.

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

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

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

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

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

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

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

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

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

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

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

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

Iowa: Managed Care and Privatization of Disability Services Create a Crisis

https://www.desmoinesregister.com/videos/news/2018/01/17/disabled-iowans-struggle-managed-care/109548320/

What's the matter with Iowa? Managed care and privatization of Medicaid for the State's poor and disabled have created a crisis in the delivery of Medicaid services. The Des Moines Register features over 60 articles from 2015 to the present reporting on the rocky road to the takeover of Medicaid by private health insurance companies.

Michigan should take note. We have a modified managed care system that so far preserves services provided by public Community Mental Health agencies and (at least theoretically) ensures that all medically necessary services will be provided to people with developmental and other disabilities. The move to privatize all services under private Medicaid Health Plans (MHP) is underway, however, with the implementation of three pilot projects and one demonstration program in the state.

Here is a sampling of articles from the Des Moines Register:

The Register’s Editorial: Medicaid plan is gift for private firms, 3/22/15

The Des Moines Register foresaw problems with the idea of privatized managed care for Iowa’s poor and disabled citizens. The editorial board encouraged the public to be skeptical, especially when the state throw’s out numbers, out of context, to show how expensive Medicaid is. It turns out that in 2015, Iowa was doing pretty well in serving people with disabilities and other low income citizens and keeping costs down in comparison to other states:

“In fiscal year 2013, a Medicaid recipient in this state cost an average of $5,491 — less than the per-person cost in 29 other states and much less than people insured by private coverage. For an adult who is not a senior or disabled, Iowa spent an average of $2,000 on health care, less than that spent in 47 other states, according to research from the Kaiser Family Foundation. Health insurance for a state lawmaker costs Iowa taxpayers about $9,000 per year.”

...“Administrative costs are low because the program is largely managed by the government, which is not beholden to stockholders or obligated to pay huge CEO salaries. The cost of operating the program is currently 4 to 8 percent, according to the Iowa Department of Human Services, which oversees Medicaid. When privatized, the cost could grow to as much as 15 percent. Those are dollars not spent on actual health care.”

...“In its comments to state officials, the Iowa Hospital Association noted that managed care companies reduce costs by denying coverage for services, including emergency room visits. The association is 'deeply concerned' that the private model could reduce access to care and reimbursement rates for providers.”

Branstad touts Medicaid contracts, but few hospitals signed

by Tony Leys, tleys@dmreg.com, 11/19/15

Signs of trouble. The takeover of Medicaid by private health plans was scheduled to go into effect January 1st, 2016 [the starting date was later moved to April 1, 2016], but by November 2015, most hospitals and physicians had not signed contracts to participate in the new system.

“Gov. Terry Branstad, who is pushing to shift management of the state’s Medicaid program to private companies on Jan. 1, said Thursday that the firms have signed more than 12,000 contracts with pharmacies, doctors and other health care providers.

“But most Iowa hospitals and physicians have not signed contracts to participate in the new system, according to the Department of Human Services. The issue is important, because the managed-care companies are supposed to show they have broad networks of health care providers willing to care for the new plans' members."

…"None of the four managed-care companies reported signing more than 17 of the 118 Iowa hospitals now participating in Medicaid. One of the companies, WellCare of Iowa, said it hadn’t signed up any hospitals. Another, AmeriHealth, said it had signed up just two.”

…”Branstad contends the shift to managed-care companies will save millions of dollars for the state and federal governments while offering flexibility and coordinated care to Medicaid recipients.

“Critics fear the change to for-profit management will lead to service cuts. They say Iowa’s 560,000 Medicaid recipients are being put in the impossible position of choosing a managed-care plan next month without knowing whether their doctors, hospitals and other health care providers will be participating in any of the networks.”

Iowa Medicaid payment shortages are 'catastrophic,' private managers tell state

by Tony Leys, tleys@dmreg.com 12/21/16

By December 2016:

“The for-profit companies running Iowa’s Medicaid program have been complaining to state administrators that the controversial project is 'drastically underfunded' and that the situation has been a 'catastrophic experience,' newly released documents show.

"One managed care executive wrote that Iowa’s recent offer to give the companies an extra $127.7 million in state and federal money this budget year 'is not acceptable.' He added that without major changes, the privately run Medicaid program could be unsustainable.”

…”Gov. Terry Branstad last year ordered the shift to private Medicaid management, which took effect April 1. Branstad, a Republican, predicted the private companies could allow the state to save tens of millions of dollars by helping the program’s 600,000 poor or disabled participants stay healthy. Critics are skeptical of the savings estimates, and they say the main effect of the switch has been to tangle Medicaid recipients and care providers in red tape.”

….”During a Statehouse hearing last week, a Democratic legislator asked executives of the three companies if they planned to ask for big raises in their payments for next fiscal year. They declined to answer.

“We really just don’t discuss those things in public settings,” Cheryl Harding, who is Iowa president for AmeriHealth Caritas, told Sen. Joe Bolkcom of Iowa City.”

Nevertheless, the health care plans complained that the plans were vastly underfunded and unsustainable. 

State should hold managed care accountable 

by Michael Bugeja, Iowa View contributor, 7/29/17 

This is the editorial viewpoint from a conservative Republican: The writer refers to a teenage “victim” of Medicaid who has a severe mental illness. Medicaid is pressuring treatment facilities to shorten the length of treatment regardless of the recommendation of the professionals involved. 

“As the former director of the Greenlee School at Iowa State University, I know Gov. Terry Branstad. I usually sat next to him at the Iowa Newspaper Association convention head table. I have the utmost respect for Gov. Branstad. His service to the state of Iowa is exemplary. But he made one colossal misjudgment in privatizing services for the mentally ill and others dependent on Medicaid services and managed care. 

"As a fiscal conservative Republican, I understand why he did it and why he believed that privatization saves the state millions of dollars. It may appear so on the surface, but savings in one area often results in expenses in others, and Iowa communities are paying the price.” 

AmeriHealth's exit should curtail disabled residents' suit against Iowa, state lawyers say

by Tony Leys, tleys@dmreg.com 11/6/17

A class action lawsuit was filed in June 2017 by Disability Rights Iowa on behalf of 6 disabled Iowans, “who argue that the state’s shift to private management of Medicaid led to illegal cuts to their in-home care services. The plaintiffs say without those services, they could be forced to move into nursing homes, violating their constitutional rights.” The class action is on behalf of about 15,000 Iowans with disabilities.

Meanwhile, Amerihealth Caritas, one of the Managed Care Companies announced that it is dropping out of the state’s Medicaid program, “because of a contract dispute. The state lawyers noted in a court filing last week that AmeriHealth oversees Medicaid benefits for all six initial plaintiffs in the Disability Rights Iowa lawsuit. None have had their benefits overseen by the remaining two managed-care companies, UnitedHealthcare and Amerigroup.”


By its very design, managed-care Medicaid discriminates against severely disabled Iowans

by Bill Dodds, Iowa View contributor, 1/26/18

"By its very design, managed-care Medicaid discriminates against disabled Iowans who require costly, long-term treatments simply to live in their communities. It’s the only way today’s managed-care organizations (MCOs) can deliver on their promise to slow the growth of Medicaid spending and generate profit for shareholders.

"Iowa, like many states, has sought to gain control over the increasing costs of its Medicaid program by doing away with a state-run system in favor of managed care. This has resulted in state contracts with multiple managed-care organizations in an attempt to incent these companies to compete in Iowa for Medicaid members by offering services that best meet their needs while simultaneously reducing costs.

"This might sound good in concept but is difficult to achieve in reality, especially for recipients who have severe mental illness and disabilities. At Optimae, we have seen this play out daily in the lives of the more than 5,300 Iowans we serve."

…"It is virtually impossible for an MCO [Managed Care Organization] to determine which of the millions of units of services provided each year is truly 'medically necessary,' given that more than 600,000 Iowans receive services under Medicaid. To compensate, the companies focus on managing the most expensive services, especially those that are long-term. This includes longer term inpatient and outpatient services, including home health and home- and community-based services for individuals with disabilities, and nursing and residential care facilities."

…”Additionally, the MCOs in Iowa and most other states are publicly traded, for-profit companies. Their management is under pressure to constantly produce better financial results for shareholders, meaning taxpayer dollars that previously paid for Medicaid services are now set aside for profits. This puts the most expensive services at even greater risk for reductions by the MCOs regardless of the outcome."

Iowa House passes Medicaid cleanup bill in effort to address managed care woes 

by Brianne Pfannenstiel, bpfannenst@dmreg.com, 3/8/18

“The Iowa House of Representatives approved legislation Thursday that lawmakers said would begin to fix some of the problems that have plagued the state's Medicaid system. "

...“The Iowa House of Representatives approved legislation Thursday that lawmakers said would begin to fix some of the problems that have plagued the state's Medicaid system. “