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. “

Iowa privatization of Medicaid generates complaints

As Iowa experiments with the privatization of its Medicaid program, complaints have spiked. Is Michigan paying attention?

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As Medicaid Managed Care Proliferates, So Do Complaints


by Clay Masters, Iowa Public Radio | November 6, 2017

Iowa is one of 38 states that radically changed the way it runs Medicaid over the past few years. The state moved about 600,000 people on the government-run health program into care that is managed by for-profit insurance companies.

The idea is that the private companies would save the state money, but it has been a rocky transition in Iowa, especially for people like Neal Siegel.

Siegel is one of six Iowans with disabilities suing the state, alleging that Medicaid managed care, as it is known, deprives thousands of Iowans with disabilities the right to live safely in their homes.

Medicaid serves people with disabilities, low-income people and people in nursing homes. A combination of federal and state funds pays for it. It covers 74 million people across the country these days, about half of whom are in Medicaid managed care.

Siegel, a former financial consultant, was in a hit-and-run bicycle crash four years ago that left him with a severe brain injury. He uses a wheelchair and can barely speak.

“I would probably put Neal at about 98 percent cognitive (awareness) of what’s going on around him, but unfortunately (he’s) not able to articulate it,” said Siegel’s girlfriend, Beth Wargo. “So it’s being trapped inside your own body.”

After the accident, Siegel qualified for Medicaid. He lived in a rehabilitation center for a while, and the lawsuit, filed in U.S. District Court in June, says he was the victim of abuse and neglect while living there.

Eventually he moved home with Wargo, where he’s totally reliant on caregivers to assist him with all activities of daily life.

Then last year, Wargo said, they got a letter in the mail from AmeriHealth Caritas, the company that manages his care. Siegel’s budget for home help had been slashed by 50 percent, Wargo said. Siegel’s face lit up as Wargo talked about the lawsuit, and he managed to say, “Oh yeah,” when she mentioned how happy they were that they could be part of it.

Cyndy Miller is the legal director with Disability Rights Iowa, the advocacy group that spearheaded the lawsuit.

“The system is too stressed right now with the way it’s being managed, and it’s not healthy for individuals with chronic or serious disabilities,” said Miller.

According to the lawsuit, the company claimed that spending on Siegel’s case was cut because it had exceeded a limit set in state policy. A spokesman for AmeriHealth Caritas said the company could not comment on ongoing litigation. The state has asked for the lawsuit to be dropped.

In addition to the suit, complaints about Medicaid from hospitals, doctors and patients have spiked in Iowa.

Iowa’s Department of Human Services Director Jerry Foxhoven defended moving the entire Medicaid population to managed care. He said more taxpayer dollars will be saved under private management.

But he said his agency is willing to make changes, especially for people like Neal with serious disabilities.

“Everything’s always on the table. We’re always looking at everything to say, ‘How do we best serve the people we’re trying to serve and be the best stewards of taxpayer dollars?'” Foxhoven said.

For their part, the three companies with contracts in Iowa said in statements that the first 18 months of Medicaid managed care have been successful. But they also have said to state officials that reimbursement rates were based on deeply flawed cost estimatesprovided to them before the project began.

They are now negotiating to get millions of dollars more in state funding.

So where’s the savings? So far, no state has actually done a comprehensive review of whether private companies actually save Medicaid dollars, said Kelly Whitener, an associate professor with Georgetown University who studies managed care.

“You’d really need to be able to see, are you saving money overall or not, and if you are spending less money, are you suppressing services that are needed? Or are you really finding efficiencies and only delivering care that families really need?” said Whitener.

For the moment, those questions don’t have definitive answers.

Meanwhile, Iowa has to balance its books. Republican Gov. Kim Reynolds had to tap more than $260 million of the state’s reserve fund this year, and officials expect next year’s budget will be even tougher to negotiate. Medicaid funding is likely to continue to be a large part of the discussion.

This story is part of a reporting partnership with NPR, Iowa Public Radio and Kaiser Health News. Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

Iowa to switch to Medicaid managed care; 25,000 people receiving Home and Community-Based Services affected

“Problems With Medicaid Privatization Plague Other States Ahead of Iowa's Switch” is a TV news report from Cedar Rapids, Iowa, looking into a similar plan in Kansas that has been in effect for three years. Kansas has had multiple problems with managed care affecting people with developmental and other disabilities. Here is a link to a video of the report and the written story from 2/29/16. 

According to KCRG.com, the problems that Kansas has encountered include “a lack of meaningful oversight, confusing reimbursement requirements from the three managed care organizations, or MCOs, who are contracted with the state, and cuts to care.” In Iowa and Kansas, two of the managed care organizations (MCOs) are the same - “Both companies are facing accusations in Kansas of systematically denying claims to turn a profit.”

For people who receive Home and  Community-Based Services (HCBS) (13,000 in Kansas and 25,000 in Iowa), the threat of service cuts is a significant problem.  According to Sharon Spratt, CEO of Cottonwood, Inc.,  a provider of long-term community-based care in Lawrence, Kansas, round-the-clock services are not cheap and it has been a constant battle to maintain them:
 
“We understood there could be some efficiencies on the medical side,” Spratt said. “But the right service at the right time doesn’t cure our folks. Our folks have lifelong disabilities.”
 
Spratt said Cottonwood often deals with the same problem of denied or unpaid claims, but most levels of care have remained the same. But following our Feb. 19 interview, Cottonwood received its first notice of an MCO denying all residential care for one of its clients. Cottonwood plans to appeal the decision.
 
Despite the warnings from Kansas, Iowa is poised to take the plunge into privatization and managed care. Whether Iowa has any better chance of success, remains to be seen. 

More dysfunction from Kansas:  A couple with a 21-year-old daughter with intellectual and developmental disabilities, autism, and a seizure disorder has been waiting since 2008 for state-funded services. 3,450 people are on the waiting list. On a lighter note (?), a woman whose daughter needed a new wheelchair and receives state services, says the state covered the wheelchair, but not the wheels.

The Disastrous Privatization of Medicaid in Iowa

See more on Iowa's managed care disaster here.

Unpaid "natural supports" in a Person-centered Plan are voluntary!

Justice in aging is a non-profit organization “fighting Senior Poverty through Law”. The focus of the organization on seniors necessarily overlaps with issues dealing with disability and poverty. 

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This Issue Brief from Justice in Aging, “Voluntary Means Voluntary: Coordinating Medicaid HCBS with Family Assistance” by Eric Carlson, May 2016, discusses the use of “natural supports” in caring for and providing unpaid services to people who receive Medicaid-funded Home and Community-Based Services (HCBS). Although the emphasis here is on seniors receiving HCBS, it applies equally to people with developmental disabilities.

According to the report (p.2), the unpaid caregiving that families provide to people with disabilities are of major significance in the system of care and services: “…Annually in the United States, about 40 million family caregivers provide an estimated 37 billion hours of care. This unpaid assistance is valued at $470 billion."

The 2014 HCBS Rule from the federal Centers for Medicare and Medicaid Services clearly states that when unpaid “natural supports” are included in a person-centered  plan, those services are voluntary. This is from §441.725(b)(5) of the rule that applies to "state plan" Person-centered plans. The same wording applies to services for people covered by various Medicaid waivers. The plan must “Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS.” [emphasis added]

In many states, Medicaid policy in fact compels family members to provide “natural supports” by limiting the number of service hours available to the beneficiary. These limitations have been based on the state's definition of Medical Necessity that, in Florida, for instance, “denies Medicaid-funded services to the extent that those services are provided for caregiver convenience”. The Policy Brief cites numerous hearing decisions that have denied extending hours that the individual needed for care based on the idea that these hours were needed merely for the “convenience” of the caregiver, such as when the caregiver had to hold down a job in addition to their caregiving responsibilities at home.

[The report also notes that “Medicaid’s voluntariness requirement does not lessen any state-law legal obligation that a parent has to care for a Medicaid-eligible minor child, or that one spouse may have to care for the other.”]

These State definitions of Medical Necessity are clearly in conflict with federal regulations and they have been challenged successfully in some cases cited in the report. Ten other states have rules similar to Florida: Iowa, Kentucky,  Maryland,  Mississippi, Nebraska,  New Hampshire,  New Mexico,  North Dakota, Tennessee, and Wisconsin.

Fortunately, Michigan’s Medical Necessity definition does not include any reference to reducing paid services based on the “convenience” of the caregiver. Unfortunately, families who are providing natural supports often feel coerced into providing or paying for services that should be covered by HCBS and delivered through Community Mental Health agencies. Families are often not informed that "natural supports" are voluntary or they have been threatened with their loved-one losing services, if they do not go along with the plan that CMH wants them to agree to. Other factors include threats to change the way services are delivered in ways that the family feels would be harmful or inappropriate for their disabled family member.

Here is one example from the report (p. 5) that shows what I consider to be the cruelty of public agencies finding excuses in Medicaid law to deny services to people who desperately need them:

Personal Care Hours Denied, Forcing 78 Year-Old Mother/Caregiver to Provide Additional Assistance
 
David, a 60 year-old man, was diagnosed with multiple sclerosis in 1991. He became quadriplegic and required complete assistance with all activities of daily living. He used a bladder catheter and wore diapers. He transferred from his bed to a motorized wheelchair with the use of a Hoyer lift, and required assistance to operate the chair.
 
David lived alone, although his 78 year-old mother lived in a separate but adjacent residence. She had breathing problems and required oxygen on a regular basis.
 
Given David’s significant needs, he had been authorized for around-the-clock Medicaid personal care services (including homemaker services and companion care). He also was authorized for seven hours weekly of skilled nursing services, in order to provide catheter care and set up medications.
 
Based on a computerized recommendation, David’s managed care organization reduced his personal care authorization from 168 hours weekly (around-the-clock coverage) to 51 hours. An appeal was filed on David’s behalf, arguing that he could not request help in case of an emergency, and had a history of going into a coma-like state when suffering urinary tract infections. The appeal request cited evidence that David had fared poorly in a nursing facility, and had improved significantly after being supported with adequate services at home.

In justifying the reduction, the MCO claimed that weekly service hours exceeding 51 hours were for the convenience of the mother. The hearing officer, however, rejected this claim, finding that the evidence did not support the requested reduction. The hearing officer noted that the MCO was requesting roughly a 70% decrease in personal care hours (117 ÷ 168 = 69.6%), and cited David’s care needs and the mother’s own health limitations.

Among the observations and recommendations coming from the report are these:

“…No family assistance can be truly voluntary if it is needed to compensate for reduction or termination of a Medicaid-funded service.”

 “Definitions and service authorization procedures should clearly establish that a family’s personal care services are only to be taken into account if the family member is legally obligated to provide those services, or the family member has volunteered. Also, to honor the concept of voluntariness, a volunteering family member must have the ability to change his or her mind, if for whatever reason the family member no longer wishes to perform the services in question.”

I agree.

Punishment for people with mental disabilities

Michigan's march toward the deinstitutionalization of people with mental illness and its lack of adequate funding and services in the community has culminated in a crisis in the prison system. The Detroit Free Press in its Sunday edition (2/5/12) features an article by Jeff Gerritt, "Punishment Instead of Treatment: Hundreds of mentally ill inmates languish in prisons ill equipped to treat them". The article follows the life of a young Michigan man, Kevin DeMott, and his struggles with mental illness and incarceration.

According to the article, Kevin has exhibited sudden fits of rage since the age of 4, started taking psychotropic medications at 9, and was diagnosed with bi-polar disorder at 11. At the age of 13, he held up a Little Caesars pizza store with a toy gun, but fled before collecting any cash. After placement in juvenile facilities in Iowa and Michigan and problems with marijuana use, he was sentenced to prison at the age of 15 with credit for time served. This was the beginning of a downward spiral, however, as he racked up additional misconduct tickets for what appears to be behavior related to his mental illness rather than an inclination toward a life of crime. 

"He has spent nearly a year of his current prison term in segregation [isolation], where his mental health problems appear to be punished instead of treated" according to Gerritt. One example cited in the article is when kevin "ripped a suicide blanket in order to hang himself. He was found guilty of destroying property, ordered to reimburse the department $145 for the blanket and given 12 day's loss of privileges." A horrible picture of Kevin taken in January of 2011 illustrates his predicament: he is chained to a bed with a helmet strapped to his head after refusing an order to stop banging his head against the wall.

Kevin is not alone. Trapped in a system that was never designed for the treatment of mental illness, more than 20% of Michigan's prisoners have severe mental disabilities, according to a 2010 University of Michigan study. Michigan closed three-quarters of its 16 psychiatric facilities between 1987 and 2003, and "now provides fewer beds per capita than all but five other states."  In addition, according to the article, 65% of those with severe mental disabilities in prison received no treatment in the previous 12 months. Of the 1,000 prisoners in administrative segregation (where prisoners "are handcuffed when they leave their cells, eat off serving trays pushed through the slots of steel doors and generally lack the few privileges extended to those in the general population…") the percentage of those who are mentally ill is likely more than in the overall prison population.

What does this have to do with people with developmental disabilities? Many of them end up in the prison system, although not nearly as many as those who are mentally ill. While the deinstitutionalization of people with developmental disabilities in Michigan is celebrated by influential advocacy organizations, none of these advocates that I know of have voiced concern for the "at least" ten people who died when the last state-run institution, Mount Pleasant Center, closed in 2009. Nor do they mention the number of people with developmental disabilities who end up in psychiatric facilities  or nursing homes when those specialized institutions close. There is also a reluctance to  acknowledge problems with inadequate care and isolation in community settings. Instead we hear support for eliminating specialized services in group settings for people with developmental disabilities in the name of freedom and inclusion. This is supported by organizations like the ARC Michigan and the Michigan Council on Developmental  Disabilities.

Rather than despair, Lois DeMott, Kevin's mother, cofounded Citizens for Prison Reform last year. This is from the MCPR blog:

 "Our lives begin to end the day we become silent about things that matter."

Understanding Guardianship Part 3: Public guardians and Wards of the State

A 2005 report, “Wards of the State: A National Study of Public Guardianship” by Teaster, Wood, Karp, Lawrence, Schmidt, and Mendiondo, gives this definition of public guardianship:

“Public guardianship is the appointment and responsibility of a public official or publicly funded organization to serve as legal guardian in the absence of willing and responsible family members or friends to serve as, or in the absence of resources to employ, a private guardian. Since the 1960s, states and localities have developed a variety of mechanisms to address this ‘unbefriended’ population, often serving as ‘guardian of last resort.’”

The report is written from the point of view that if a mentally incapacitated person needs a guardian and has a willing and responsible family member or friend who can take on that role, this is better for the individual and less costly for the state. But if there is no one to do this, the state must find a way to fill the need for guardians. The relevance of this report is that it highlights conflicting policies within the system of care and protection for people with disabilities. We now have federally-funded advocacy organizations and agencies that, rather than encouraging families and friends to step up to the responsibility of becoming guardians, are doing more and more to discourage guardianship. This is occurring through the promotion of less formal (and less accountable) means of making decisions for people who are mentally incapacitated through Supported Decision-Making.  

The “Wards of the State" study is a combination of an extensive literature search on the topic of public guardianship, a review of case studies, and the results of surveys involving guardianship program staff from Florida, Illinois, Indiana, Iowa, Kentucky, Missouri and Wisconsin with additional material from phone interviews and focus groups. [The page numbering of the 2005 report is inconsistent and confusing. Instead of using the page numbers at the bottom of the page, I will give you the page number of the downloaded PDF file of the report: p. 8 of the PDF]

[A more recent report from 2007, “Wards of the State: A National Study of Public Guardianship” by Teaster, Wood, Lawrence, and Schmidt, is based on the 2005 report and was published in the Stetson Law Review, Vol. 37. According to a footnote on p. 194,  “Although the data used in the study were collected in 2004, this Article includes updated statutory information added after the project report...This Article relies heavily on the results and summaries developed by the Authors in [the 2005] Public Guardianship Study…” The 2007 report is based substantially on the 2005 report and comes to similar conclusions.]

There is conflicting evidence on the effect of public guardianship on people who are disabled because of advancing age or who acquire disabilities at other stages in life for a variety of reasons. One observation of the 2005 report  is that, “In truth, we have very little data to refute or substantiate this. Statistics are scant. The number of adults under guardianship in the United States remains unknown...This paucity of research makes it difficult to assess the results of guardianship reform efforts.” [p. 21 of the PDF]

The 2005 and 2007 Public Guardianship Reports cover the recent history of guardianship, its abuses, and attempts to reform it. Here are some highlights of the report that I found interesting and relevant to todays controversies over guardianship and the promotion of Supported Decision-Making as a substitute: 

• “Wards. Individuals under guardianship appear to have shifted somewhat from the older adult population (e.g., persons aged 65+) to a younger population (e.g., persons ages 18-64). In many ways, reported anecdotally, younger wards reflect a more challenging client mix. Primary diagnoses of wards were typically  developmental disabilities, mental illness, and mental retardation [intellectual disabilities]… rather than AD [Alzheimer’s Disease] or other dementias… “
• “Public guardianship programs may be categorized into four distinct models…(1) a court model; (2) an independent state office; (3) a division of a social service agency; and (4) a county agency. [p. 180 of PDF] Most states run public guardianship programs as a division of a social service agency, although this system is the most prone to conflict of interest between the agency’s role of a guardian (monitoring and advocating for services) and the role of a social services agency (providing for services). [p.6 of the PDF]
• “Overwhelmingly, when respondents provided information on strength, weaknesses, opportunities and threats, the greatest strength was that of the public guardianship staff. Most staff members [of agencies providing public guardian services] worked under difficult conditions with less than adequate remuneration and with difficult clients. Turnover of staff was reportedly surprisingly low. The predominant weakness of programs was the lack of funding…” [p. 8 of PDF]
• “In most states, a majority of public guardianship wards are institutionalized….The Olmstead case provides a strong mandate for re-evaluation of extent of institutionalization of public guardianship clients.” [p. 180 of PDF] [This has been a contentious issue in states that are pursuing deinstitutionalization contrary to the wishes of facility residents and their families. Overzealous state guardians have at times been perceived as acting for the interests of the state to close institutions, rather than in the wards' best interests. See also, “The Olmstead Decision has been Misinterpreted”]
• “Not surprisingly, …was the assertion, by nearly every program in every state of a critical lack of funding, which translated into circumscribed services for wards and inadequate staffing to meet ward needs. This is more significant now than in the past, as the demographic imperative portends more and more individuals needing guardianship services.” [p. 9 of PDF]

These are among the conclusions of the report [p. 12 of PDF]:

• States have significant unmet needs for public guardianship and other surrogate decision-making services.
• Staff size and caseload in public guardianship programs show enormous variability.
• Public guardianship programs are frequently understaffed and underfunded.
• Although some public guardianship programs use ratios to cap the number of clients, most serve as guardian of last resort without limits on intake.
• Funding for public guardianship is from a patchwork of sources, none sufficient.
• Very little data exist on public guardianship.
• Oversight and accountability of public guardianship is uneven.

This report is a comprehensive study - I have barely scratched the surface. 

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Supported Decision-Making has been promoted as a replacement for guardianship despite a lack of standards and very little evidence of its effectiveness in protecting people who are mentally incapacitated. When advocates and federal agencies speak pejoratively about guardianship and charge that people who seek it are depriving their loved-ones of their rights, is it any wonder that state courts and public agencies have difficulty in finding family members and personal friends of the individuals involved who are willing to be guardians? If the state can’t get families and friends to take on the responsibility of guardianship, the increased use of public guardians as “the last resort”, seems inevitable. Is it not likely that the unintended consequences of the Supported Decision-Making movement will be a detriment to the people they are claiming to help?

A Supreme Court unanimous decision on IDEA

Fire Power

Below is a news item from ACCSES, a national disability provider organization. On 3/22/17, the U.S. Supreme Court overturned a 10th Circuit Court decision on IDEA, the Individuals with Disabilities Education Act. They ruled in favor of parents who sent their child to a private school after the school district failed to provide a Free and Appropriate Public Education (FAPE), to their child. 

Neil Gorsuch, who has been nominated to the Supreme Court by President Trump, was part of the lower court decision against the parents. 

According to an article in the Los Angeles Times from 3/22/2017: 

"Asked about the issue on Wednesday, Gorsuch said he was a part of a unanimous three-judge panel that had sought to follow a Supreme Court standard set in 1982.

"Several liberal groups described the court's decision as a direct rebuke of Gorsuch.

"However, Senate Judiciary Committee Chairman Charles E. Grassley (R-Iowa) noted that Gorsuch was not part of the three-judge panel whose ruling was directly reversed in the court’s decision in Endrew F. vs. Douglas County"

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An ACCSES News Alert, 3/22/17, from Kate McSweeny, Vice President of Governmental Affairs & General Counsel:

Today, the United States Supreme Court handed down a unanimous decision in Endrew F. v. Douglas County School District, deciding that children with disabilities are entitled to an Individual Education Plan (IEP) that will provide challenging objectives appropriate for the individual. 

Many of you who came to ACCSES’s Summit in Savannah or attended ACCSES’s Education Policy Committee call earlier this month will recall that the underlying case was brought by the parents of a boy with autism, whose IEP had been virtually unchanged during the time he had spent in the school system from pre-school to the fourth grade. The parents moved Endrew to a private school that focuses on students with autism, where their son did much better. They also sued the local public school system for its failure to provide a “free appropriate public education” (FAPE) to their child as required under the Individuals with Disabilities Education Act (IDEA).

Endrew and his parents lost before an administrative law judge, a federal district court, and the United States Court of Appeals for the Tenth Circuit. The Tenth Circuit determined that a child’s IEP is adequate so long as it is calculated to confer “an educational benefit” that is “merely more than de minimis.” By applying this standard, the Tenth Circuit determined that Endrew’s IEP had been “reasonably calculated to enable him to make some progress”; therefore, he had not been denied a FAPE. The Supreme Court granted certiorari and heard oral arguments in the case in January.

In the decision handed down today, the Supreme Court disagreed, and vacated the Tenth Circuit decision. Rather than the low de minimis standard, the Supreme Court stated:

“To meet its substantive obligation under the IDEA, a school must offer an IEP reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” While the Court declined to establish a specific standard, it expressly stated that “a student offered an educational program providing ‘merely more than de minimis’ progress from year to year can hardly be said to have been offered an education at all. For children with disabilities, receiving instruction that aims so low would be tantamount to ‘sitting idly . . . awaiting the time when were old enough to drop out.’ The IDEA demands more.” (Citations omitted.)

You can read the decision at this link. It’s a good read.

Michigan voter information - the Secretary of State's Website is the most reliable source

Last week, Michigan was the subject of a tweet storm between President Trump and Jocelyn Benson, the Michigan Secretary of State. As the dust settled, it turned out the President’s assertions were without merit and the original tweet was deleted, but the odor lingered of a grossly misleading accusation - that the Michigan Secretary of State was implicated in voter fraud. 

I looked to Factcheck.org for an accurate account of what happened. Factcheck.org is a “nonpartisan, nonprofit 'consumer advocate' for voters that aims to reduce the level of deception and confusion in U.S. politics.” It is a project of the Annenberg Public Policy Center of the University of Pennsylvania. 

According to this article at Factcheck.org, “Trump’s False Tweet About Michigan Absentee Ballot Applications” by D’Angelo Gore, 5/20/20:
 
“President Donald Trump erroneously tweeted that Michigan’s Democratic secretary of state was 'illegally' sending 'absentee ballots to 7.7 million people' for this year’s primary and general elections.

“The state said it will send absentee ballot applications — not actual ballots — to all registered voters, who may want to vote by mail.”

The article confirms that Benson’s Republican colleagues in Iowa, Georgia, Nebraska, and West Virginia have also mailed absentee ballot applications to voters and there is nothing illegal about it.

“The National Conference of State Legislatures says that all U.S. states allow qualified voters to vote by absentee ballot, and five states (Utah, Colorado, Hawaii, Washington and Oregon) currently conduct all their elections primarily by mail. Michigan is one of 34 states that do not require an excuse from those who want to vote by absentee ballot, according to the NCSL." [emphasis added]
 
The President deleted his original tweet and replaced it with one that claimed incorrectly that sending out ballot applications is illegal. He also threatened to withhold unspecified federal funds from Nevada and Michigan for sending out “illegal” ballot applications.

Furthermore, “Election experts previously told us that fraud via mail-in ballots is more common than in-person voting fraud, but still rare. Plus, a recent study by Stanford University’s Democracy & Polarization Lab found that neither the Democratic or Republican parties would benefit from an entirely vote-by-mail system.”
 
Putting all this aside, the Michigan Secretary of State Website has tons of information on voting. Here are some excerpts that tell you who can vote, where to vote, and how to vote;

How does one register to vote and who is eligible to vote?
 
You can register to vote through Election Day.
 
You must be:

• A Michigan resident (at the time you register) and a resident of your city or township for at least 30 days (when you vote)

• A United States citizen

• At least 18 years of age (when you vote)

• Not currently serving a sentence in jail or prison

[Note that a person under guardianship as determined by a Probate Court is not disqualified from voting. My husband and I are plenary co-guardians for our two sons who have profound developmental and Intellectual disabilities. If we thought they had opinions on who they would like to vote for, we would be happy to facilitate that. But they are unable to communicate or give any indication that they understand the concept of voting, so we will not do that. If we did, I think one could easily question whether we were having them express their own thoughts and opinions, or just giving ourselves two extra votes based on our own opinions.]

Check to see if you are registered to vote
 
[Michigan does not register voters by political party. If you vote in a primary election to choose a candidate for a political party, you must pick which party primary you want to vote in. You may not split your vote between parties.]

Frequently asked questions about voting
 
Excerpts:

Do I need to show identification in order to vote?

Michigan does have a voter identification requirement at the polls. Voters are asked to present an acceptable photo ID such as a Michigan driver's license or identification card. Please note that voters who do not have an acceptable form of ID or failed to bring it with them to the polls still can vote. They simply sign a brief affidavit stating that they're not in possession of a photo ID. Their ballots are included with all others and counted on Election Day….

Can Michigan residents in jail or prison still vote?

Michigan residents confined in jail or prison who are awaiting arraignment or trial are eligible to vote. However, residents who are serving a sentence in jail or prison after conviction cannot vote during the period of confinement. When residents are released from jail or prison after serving a sentence, they are free to participate in elections without restriction.

Can voters be challenged based on home foreclosures?
 
The compilation of home foreclosure information alone does not provide sufficient reason to challenge a person's voting status. In fact, the Michigan Republican and Democratic parties are in agreement that so-called foreclosure lists do not provide a reasonable basis to challenge voters.

How does the voter ID requirement affect me if I vote with an absent voter ballot?
 
If obtaining your absent voter ballot in person, you will be requested to show photo ID. If you are not in possession of photo ID, you can simply sign an affidavit stating you are not in possession of photo ID. This requirement does not apply if requesting your ballot via mail. 

Does Michigan allow early voting?

Michigan Voters can cast absentee ballots beginning 45 days prior to Election Day. These ballots are tabulated on Election Day.

For more information and answers to questions, see Michigan Election and Voter Information

Future Scheduled elections: 

Primary elections: August 4, 2020
General election: November 3, 2020

Michigan: Radical proposals to change Medicaid services for IDD put our loved one's right to services at risk

This is from One Voice – A Michigan Parent/Family advocacy organization in support of individuals with Intellectual and Developmental Disabilities. 

Proposals from the Michigan Department of Health and Human Services (MDHHS) are not much different than the attempts by the previous administration to shift Medicaid funding away from Community Mental Health agencies to Medicaid Health Plans and to privatize services. Medicaid Health Plans would like to be in control of the Medicaid budget for people with developmental and other disabilities, but they have little experience with providing the social services, residential services, and other specialized programs necessary for the survival of the IDD population. 

Most disturbing to me is the desire to base services on the Supports Intensity Scale (SIS) questionnaire. Years ago, the state DHHS clarified that this assessment tool is not appropriate in all cases: “The SIS should be used to enhance and support the person-centered planning process. As with all assessments, the SIS is voluntary and should not be tied to determinations of medical necessity and the authorization of behavioral health services. Supports and services cannot be denied, reduced or discontinued if a consumer and/or guardian refuse to cooperate with the assessment process.” 

For my sons, who are profoundly intellectually and physically disabled, the SIS assessment misses the boat entirely. For one thing, it assumes that the only worthy goal is to provide supports so that everyone with IDD can live in the community just like everyone else who is not disabled. I can assure you that for my sons, "living just like everyone else", is a fantasy. Helping them to have a quality of life worth living entails acknowledging their extensive medical and physical needs that go far beyond what they are likely to ever find in "the community".

When my son Ian was assessed using the SIS at the age of 30, one of the questions asked was what supports are necessary to allow Ian to "date" like a typical 30-year old man. He cannot walk, talk, or do anything without total assistance. He is nevertheless a charming, lovely man, but we will never know what he thinks about "dating" or anything else in any specific way. An answer that indicated that "dating" might not be possible was not allowed. Indulging this fantastical way of thinking does not help Ian. Acknowledging that people with IDD have a wide spectrum of need and allowing for individual differences by providing a full array of services and residential options will help.

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Provided by One Voice –A Michigan Parent/Family advocacy organization in support of individuals with Intellectual and Developmental Disabilities Email us at: onevoicemi@gmail.com Bob Pierce, Chair of One Voice

ACT NOW To save our loved one’s supports and right to services. 

Radical changes are being proposed at the State level for Medicaid Services for our I/DD family members. Extraordinarily incomplete detailed information has been made available to the public. The announced timeline is to have the changes implemented in 2022! Here is a summary of our understanding and take on the issue. 

 MDHHS is moving toward a model that calls for Specialty Integrated Plans that combine behavioral and physical health plans under one umbrella that appears to most likely place Medicaid under private control.

Terms like “Most things stay the same” and “Ability to pick your plan (including a public-led option if you want)” are in Director Gordon’s public sales pitch for this revolutionary change.

The key to changes is the part about opening up the Mental Health Code. The Code currently says services are based on the Person Centered Plan (PCP). That Section will likely be removed, and services will be based on a Supports Intensity Scale (SIS) questionnaire. Questions can be misleading, and numbers manipulated to limit what services are legally protected. We cannot let the SIS dictate the needs of our loved ones.

Nowhere has anyone publicly detailed what is failing in our existing systems or how to improve these shortcomings. It is our belief that this is simply a plan to eliminate financial risk for the state, reduce support and services for our I/DD family and ultimately privatize Community Mental Health services.

Other states have implemented similar programs. Here are a few samples of press headlines that reflect the “success” of these changes:

North Carolina gets a “F” on how equally it treats mental and physical health issues – North Carolina Health News 1/15/19

Medicaid changes hit mental health services in state; payment cuts cited as providers shut – Arkansas Democrat Gazette 12/9/2019 

We must send a loud and clear message to Governor Gretchen Whitmer - NO Specialty Integrated Plans (SIPs) and NO opening of the Mental Health Code! Slow down this process now!! 

Please contact the Governor now! Time is of the essence. State Representatives, State Senators and your local County Commissioners need to hear our voices.

Governor Gretchen Whitmer

P.O. Box 30013
Lansing, Michigan 48909

517-373-3400
517-335-7858 (Constituent Services)

Governor Whitmer
https://govenorsoffice@mich.gov https://MDHHS-futureofbh@michigan.gov State Senator https://www.senate.michigan.gov/fysbyaddress.html

State Representative
https://www.house.mi.gov/mhrpublic/frmFindaRep.aspx

Washtenaw County Board of Commissioners
https://gisappsecure.ewashtenaw.org/public/BOC/

References:

https://www.arkansasonline.com/news/2019/dec/09/medicaid-changes-hit-mental-health-serv/

https://www.northcarolinahealthnews.org/2019/01/15/north-carolina-gets-a-f-on-how-equally-it-treatsmental-and-physical-health-issues/

Press release announcing the plan.
https://www.michigan.gov/som/0,4669,7-192-29942_34762-513879--,00.html

MDHHS Director Gordon’s slide presentation 

http://www.house.mi.gov/hfa/PDF/HealthandHumanServices/ DHHS_Subcmte_Testimony_MI_Behavioral_Health_System_New_Approach_12-4-19.pdf 

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See also, 

"Families providers ask tough questions on plans to integrate Medicaid mental health" by Jay Greene from Crain's Detroit

The DD News blog: Managed care and privatization create a crisis in Iowa