Michigan compromise budget for mental health: stalls complete takeover by medicaid health plans & funds pilot programs

In May 2017, The DD News Blog covered proposed radical changes to how services for people with developmental disabilities, mental illness, and substance abuse disorders will be delivered and who will be in control of the Medicaid dollars that pay for those services. The intent of proposed legislation was the eventual privatization of mental health services by “integrating” mental health and medical Medicaid services under the control of Michigan’s private Medicaid Health Plans.

The final budget compromise has at least stalled the complete privatization of the mental health system. The compromise preserves the current ten Prepaid In Patient Health Plans (PIHPs), regional administrative agency that distribute Medicaid funding for Mental Health services. There will also be as many as four pilot programs to test whether privatization, i.e. handing over control of Medicaid funding for mental health services to Michigan’s Medicaid Health Plans, can lower costs and expand services.

These are excerpts from an article in Crain’s Detroit Business, “Budget deal advances plan to test Medicaid mental health integration” by Jay Greene, 6/20/17.

“The budget deal allocates $2.8 million the first year to the fiscal 2017 budget to plan the pilots, and $3.1 million for fiscal 2018, which starts Oct. 1, to fund the pilots themselves. The $5.9 million funding includes $2 million in general state tax funds.

“The implementation of the pilots will be overseen by the state Department of Health and Human Services, which must hire by Aug. 1 an experienced project facilitator. The manager must establish performance metrics and pilot plans.”
…
“Over the past 18 months, Michigan's 11 Medicaid health plans have lobbied legislators and the public to try a semi-privatized approach. They contend they can run an efficient $11.6 billion integrated delivery system, save the state several hundred million dollars of administrative money and plow back the savings into expanded services. There are an estimated 350,000 people in the state's Medicaid program with mental illness, developmental and intellectual disabilities, and substance abuse problems.

“But mental health advocates, providers and families object to Medicaid HMOs taking over the system — even to test an integrated approach with which more than two dozen states are experimenting. They believe health plans have insufficient experience at overseeing complex populations and argue that private profit motivations of the health plans will trump public service.”
…
“[State Senator Mike] Shirkey, chair of the Senate health policy committee, has told Crain's the Medicaid HMOs will not be able to keep any savings. They must reinvest any savings into expanded services.

“Bob Sheehan, CEO of the Michigan Association of Community Mental Health Boards, said he is concerned that the budget language allows Medicaid health plans to contract outside of the several dozen established community mental health agencies and provider networks.

“‘Making the local community mental health (agency) only one of many providers in the pilot communities will immediately drain dollars from the community's mental health safety net ... leaving it unable to fulfill its statutory safety net role,’ Sheehan said Tuesday night in an email to Crain’s.”

Implementation of the pilot programs will include the following:

• That any changes made to a Medicaid waiver or Medicaid state plan to implement the pilot project must only be in effect for the duration of the pilot project.
• That the project is consistent with the stated core values as identified in the final report of the Section 298 workgroup in Public Act 268 of 2016.
• That updates are provided to the medical care advisory council, behavioral health advisory council and developmental disabilities council.

Michigan House Establishes New Mental Health Task Force

August 30, 2017---

Task Forces come and go and sometimes they make a difference. In any case, this one gives you an opportunity to communicate to members of the Michigan House of Representatives directly about how you would improve the mental health system in Michigan. The specific topics that the task force is interested in are not related to developmental disabilities, but that does not mean you can't participate and give suggestions. All too often, we are told that everything is just fine for people with developmental disabilities and that we really are amazing at serving people with DD in the community. We know that is not true, so don't let state government sweep problems in the system for people with DD under the rug.

This if from the Michigan Assisted Living Association (MALA) newsletter, August 1, 2017:

**************************************
House Establishes New Mental Health Task Force

Michigan House Speaker Tom Leonard has created the bipartisan House C.A.R.E.S. (Community, Access, Resources, Education and Safety) task force to obtain input from individuals and professionals for improving mental health services in our state. The task force members are listed below.

The Speaker’s website makes specific reference to gathering information to help develop legislation for reforming mental health services across Michigan to address veterans’ care, substance abuse treatment, mental health courts, and training for law enforcement. The task force will undoubtedly also receive input on other issues.

The task force held its initial meeting on July 31 in Livingston County. According to the Michigan House Republicans website, the next task force meeting is on August 17 at Hope Network in Grand Rapids.

Please note that the public can submit suggestions regarding mental health services in Michigan by e-mail to Rep. Hank Vaupel (R-Fowlerville) who serves as one of the co-chairs for the task force. His e-mail address is HankVaupel@house.mi.gov. The other co-chair is Rep. Klint Kesto (R-Commerce Township)

The other task force members are as follows:

Rep. Edward Canfield D.O. (R-Sebewaing)
Rep. Fred Durhal III (D- Detroit)
Rep. Vanessa Guerra (D-Bridgeport)
Rep. Abdullah Hammoud (D-Dearborn)
Rep. Robert Kosowski (D-Westland)
Rep. David LaGrand (D-Grand Rapids)
Rep. Dave Pagel (R-Berrien Springs)
Rep. Daire Rendon (R-Lake City)
Rep. Sylvia Santana (D-Detroit)
Rep. Jason Wentworth (R-Clare)
Rep. Mary Whiteford (R-Casco Township)
Rep. Robert Wittenberg (D-Oak Park)

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

House C.A.R.E.S. Committee

The next meeting of the Committee will be on Thursday, Sept. 7, 2017 in the House Appropriations Room, 352 State Capitol, Lansing. 1 - 3 p.m. meeting to start after legislative session ends for the day.

Comments to the U.S. Department of Justice on the "Integration Mandate"

The U.S. Department of Justice recently issued a request for comments, in response to Executive Order 13777, which requires federal agencies to evaluate and implement measures to lower regulatory burdens on the American people. The Executive Order directs each agency's Regulatory Reform Task Force to identify regulatory actions that do the following:

• Eliminate jobs, or inhibit job creation;
• are outdated, unnecessary, or ineffective;
• impose costs that exceed benefits;
• create a serious inconsistency or otherwise interfere with regulatory reform initiatives and policies;
• are inconsistent with the requirements of the Information Quality Act (section 515 of the Treasury and General Government Appropriations Act, 2001, 44 U.S.C. 3516 note), or OMB Information Quality Guidance issued pursuant to that provision, in particular those regulations that rely in whole or in part on data, information, or methods that are not publicly available or that are insufficiently transparent to meet the standard for reproducibility; or
• derive from or implement Executive Orders or other Presidential directives that have been subsequently rescinded or substantially modified.

VOR, a national non profit organization that advocates for high quality care and the human rights of individuals with intellectual and developmental disabilities (I/DD), submitted comments on August 14, 2017, to the DOJ on policies regarding enforcement of the “Integration Mandate” of the Americans with Disabilities Act and the 1999 U.S. Supreme Court Olmstead decision. VOR believes policies from the DOJ wrongly impose an interpretation of the Integration Mandate that denies individual choice and need.

These comments are available on the VOR Website. The supporting references have been omitted here, but can be found in the PDF version of the document.

Americans with Disabilities Act regulations address General Prohibitions against Discrimination under the ADA. 

VOR Olmstead Resources

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

August 14, 2017

Department of Justice Request for Public Comment: Enforcing the Regulatory Reform Agenda; Department of Justice Task Force on Regulatory Reform Under E.O. 13777

Introduction

VOR is a national non profit organization that advocates for high quality care and the human rights of individuals with intellectual and developmental disabilities (I/DD). Our members are primarily family members and guardians of individuals with I/DD who access state Medicaid long-term services and supports. Many of our members are on the severe and profound end of the disability continuum, some functioning at the level of a small child or infant. Their intellectual disabilities are often accompanied by complex physical and medical conditions and behavioral concerns. The disabilities of these individuals are such that many require and choose 24-hour supervision and nursing care and community integration found in Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and similar facilities.

Regulatory Burden - DOJ’s Integration Mandate

DOJ Statement on Enforcement of the Integration Mandate of Title II of the ADA and Olmstead, June 22, 2011

DOJ Statement on Application of the Integration Mandate of Title II of the ADA and Olmstead to State and Local Governments’ Employment Service Systems for Individuals with Disabilities, October 31, 2016

The DOJ interpretation, enforcement, and application of the ADA and Olmstead wrongly impose an “Integration Mandate” that denies individual choice and need. The adverse affects of this policy is manifold:

1. Health and safety are placed at risk when DOJ’s “integration mandate” forces individuals against choice and need out of ICF/IID homes into small group homes without appropriate services, supports, and supervision. This policy acts counter to Olmstead.
2. For some individuals, community integration is placed at risk in a four person group home with only a 1:4 staffing ratio. Small settings do not have sufficient staffing and transportation resources to accompany severely and profoundly intellectually disabled individuals on outings. These individuals require 1:1 supervision in the community, and for some, nursing support.
3. Facility-based supported employment and day programming are placed at risk leaving individuals with disabilities who cannot perform competitive work without opportunities for skill development.
4. ICF/IID, sheltered workshop, and day programs employ experts in the care and treatment of I/DD. The development of this expertise and access to it is lost as congregate settings are closed.
5. The per person cost of care increases dramatically as congregate care is shut down as sharing of resources is limited in small HCBS waiver settings. Nursing, therapy, adaptive equipment, direct care, and transportation are shared in an ICF/IID. These services are separately contracted on an individual basis in waiver settings. Forcing complex needs people into community settings against choice has adversely affected Home and Community-Based Services (HCBS) Wait Lists . 
6. Access to appropriate medical care can be difficult to obtain in scattered small settings as few medical practitioners have experience in treating individuals with severe and profound I/DD.
7. Forcing individuals with I/DD into competitive employment against choice puts individuals with I/DD in risky circumstances as many private businesses are not set up to address maladaptive behaviors, personal care, special feeding needs, and medication administration. Employees of private businesses are placed in difficult situations if they are not trained to handle violent and other maladaptive behaviors, health issues such as seizures, and personal care needs.
8. Costly lawsuits brought by DOJ and Protection & Advocacy agencies (P&A) against state governments have cost millions in taxpayer dollars and resources at the federal and state level to litigate and defend against. Families fighting these lawsuits must fundraise to hire legal representation to ensure their loved ones interests are protected. The cost and worry these lawsuit inflict on law abiding Americans who already face a difficult road in life protecting their intellectually disabled loved ones is inhumane.

DOJ’s notion of an “integration mandate” emanates from: 28 C.F.R. § 35.130(d) A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities. A mandate conflicts with the requirement that integrated placements are “appropriate to the needs of qualified individuals with disabilities.”

The disability population is complex and diverse encompassing mental, intellectual, physical, medical and behavioral conditions. The Olmstead Court recognized this diversity, and therefore, cautioned and warned of the need for a range of settings, including institutional settings, throughout its majority and concurring opinions. Justice Ginsburg stated,

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle and benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead 601-602

Therefore, the notion of an “integration mandate” defies Olmstead. It also defies DOJ regulation:

• 28 CFR 35.130(e)(1) Nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit provided under the ADA or this part which such individual chooses not to accept.
• 28 C.F.R § 35.130 public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do. 

DOJ regulation defines an “integrated setting appropriate to the needs of an individual” to be:

28 C.F.R. Pt. 35, App. A (2010) (addressing § 35.130) 

i.e., in a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible, and that persons with disabilities must be provided the option of declining to accept a particular accommodation

DOJ’s June 22, 2011 guidance states that integrated residential settings are “scattered-site housing with supportive services” and that congregate settings are “segregated.”

DOJ’s October 31, 2016 guidance states that integrated work settings allow individuals “to work in a typical job in the community like individuals without disabilities” and that sheltered workshops are “segregated.”

DOJ fails to understand that just as beauty is in the eye of the beholder, integration is as well.

• A profoundly intellectually disabled young man in a wheelchair who has no concept of hazards cannot maneuver his wheelchair independently in the community, but can on his own in a large ICF/IID with long, wide hallways, no stairs to fall down, lots of areas to visit, and plenty of caregivers, visiting family members, and volunteers to keep a watchful eye on him. In a small community setting, this young man would find himself bumping into walls and furniture with his wheelchair.
• A severely autistic man prone to violent behaviors and elopement may be a danger to himself and others in a small setting. But, he may find more freedom and independence in a large facility with more staff on hand to support his behaviors, more places to visit and activities to engage in, and in many cases, large grounds on which to take recreation where he cannot harm others.
• A severely intellectually disabled woman with quadriplegia and a ventilator likely will not have sufficient staff to take her on outings if she lives in a four person group home with the typical 1:4 staffing ratio. She requires 1:1 supervision in the community and possibly nursing support.
• A severely autistic young lady with maladaptive behaviors may find a full work-day of supported employment daily in a sheltered workshop. This young lady may be too costly to employ in a community business and her behaviors too hazardous to herself and others which may severely limit the number of hours she is employable in the private sector.

Therefore, for some, a large ICF/IID provides more independence, freedom and community integration than a small community group home, and a sheltered workshop provides more hours of employment and integration than a competitive job. Integration is in the eye of the beholder.

It is for these reasons the Olmstead Court held,

"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 at 597 (Emphasis added.)

Informed Choice

DOJ’s guidance asserts a concept of “informed choice” and suggests that individuals and families have historically not acted in an informed way when they have chosen institutional placements. But, the ADA and Olmstead do not qualify the term “choice” by defining an informed or ill-informed choice. Doing so, would negate choice.

Throughout Olmstead’s majority and concurring opinions, the justices state the need for a range of facilities, recognize the right of an individual to oppose an accommodation, and establish a three-pronged test for community placement that incorporates individual need and choice. In doing so, the Olmstead Court emphasizes the rights of the individual with disabilities and the importance of health and safety. Olmstead states,

"For other individuals, no placement outside the institution may ever be appropriate." Olmstead 605 

“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.” Olmstead 605

“Each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing that, on a case-by-case basis, that setting may be in an institution.” Olmstead 605

“In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.” Justice Kennedy, Concurring Opinion, Olmstead 610

DOJ Actions

DOJ brings what it terms “Olmstead actions” against states to enforce its “integration mandate.” These actions are ostensibly aimed at expanding HCBS services, but have the effect of reducing the ICF/IID and sheltered workshop choice. To the extent that the DOJ is successful in intimidating states to force closures of ICFs/IID and sheltered workshops, these actions also have the effect of fundamentally altering a states’ service system, overriding the executive and legislative decisions of elected officials and the placement decisions of private citizens. Justice Ginsburg stated,

"Accordingly, we further hold that the Court of Appeals’ remand instruction was unduly restrictive. In evaluating a State’s fundamental-alteration defense, the District Court must consider, in view of the resources available to the State, not only the cost of providing community-based care to the litigants, but also the range of services the State provides others with mental disabilities, and the State’s obligation to mete out those services equitably." Olmstead 597 (Emphasis added.)

States are in a better position to know the needs of their fragile constituents, and therefore, federalism calls for decisions concerning the balance of service systems to be deferred to states to ensure the effective, compassionate, and efficient use of resources.

DOJ enforcement in relation to the make-up of state developmental disabilities (DD) service systems ignores the reality that these systems are overwhelmingly balanced in favor of community services. Exhibit A shows that ICF/IID care makes up just a fraction of DD service system capacity. Most states do not notify families of the ICF/IID choice in defiance of federal Medicaid law for fear of a DOJ or P&A action. As noted, the loss of a vital choice on the continuum of care has contributed to large HCBS wait lists that have grown dramatically for the reasons stated in Exhibit A.

Historically, individuals and their families accessing services at targeted facilities are overwhelmingly opposed to a DOJ action. Such actions impose an intense burden on families both in terms of emotional hardship, worry, and financial stress. Important accommodations which make life manageable for individuals with I/DD and their caregivers are callously put at risk with DOJ actions. Families must fundraise and expend significant resources to defend against DOJ actions as publicly funded legal assistance through the P&A program is not available from highly conflicted advocates who only advocate for people who can handle and benefit from community services. District Court Judge Leon Holmes best described the position of families in his Dismissal Order of a DOJ action,

“Most lawsuits are brought by persons who believe their rights have been violated. Not this one...All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States. Thus, the United States [Department of Justice] is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons – through their parents and guardians disagree.” US. v. Arkansas, 4:09-CV-0033, Dismissal Order, June 8, 2011

Ignoring the careful and loving decision-making of families has come with tragic consequences. Justice Kennedy warned against just this in his concurring opinion in Olmstead,

“It would be unreasonable, it would be a tragic event, then, were the American 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.” Justice Kennedy, Concurring Opinion, Olmstead 610

The DOJ settlement agreement in Georgia was paused due to the high number of deaths resulting from DOJ’s integration mandate. Recent tragedies in Virginia connected to a DOJ settlement agreement have also caused alarm. See Exhibit B for a discussion on abuse, neglect, and death resulting from deinstitutionalization.

The threat of DOJ interference in a state can have serious ramifications for individuals with I/DD. P&A and DOJ activity in Illinois led to deinstitutionalization efforts, but the state was unable to fund and provide appropriate community supports. A recent Chicago Tribune investigation revealed that widespread abuse was occurring in Illinois’ community system while the state’s P&A was either unaware or did not address issues. See Exhibit B. It took newspaper reporters to bring the rampant mistreatment to light. Illinois’ P&A failed the fragile clients of Illinois’ community system. DOJ’s Statements of Interest filed in Illinois P&A actions helped to drive deinstitutionalization there before an adequate community service system was put in place.

Protection & Advocacy

VOR wishes to correct DOJ’s citation of the Protection & Advocacy statute in its June 22, 2011 guidance. The statute states, “the State shall have in effect a system to protect and advocate the rights of individuals with developmental disabilities.” 42 USC 15043. DOJ leaves out the qualifier “developmental” in its guidance.

Conclusion

VOR requests DOJ to honor individuals in their application of the ADA and Olmstead. Congress and the Olmstead Court did not mean for disability law to be feared by individuals with disabilities, as DOJ’s interpretation yields. Enabling community services for those who can handle and benefit from them should not come at the expense of more vulnerable individuals with I/DD who need and choose congregate care.

Crime rates against people with disabilities are twice as high or more than for non-disabled

The U.S. Department of Justice's Bureau of Justice Statistics released a report  in July 2017 showing that people with disabilities are at least twice as likely to be victimized by violent crime as people without disabilities. 

Disability Scoop, a news Website on developmental disabilities, summarized the findings of the Justice Department report in an article by Shaun Heasley, 7/18/17.

• People with disabilities are more than twice as likely to be victims of violent crime, according to new federal data.
• Moreover, this population faced three times the odds of the most serious violent crimes like rape, sexual assault, robbery or aggravated assault.
• Among people with disabilities, the agency found that individuals with cognitive issues were most likely to be targeted.
• In 40 percent of cases, the Bureau of Justice Statistics reported that individuals with disabilities who were victimized knew the perpetrator compared to just 32 percent of people without disabilities.
• Men and women with disabilities faced similar odds of victimization, according to the data.
• The report indicated that 1 out of 5 crime victims in this population are believed to have been targeted because of their disability.

Most of the statistics presented are based on the noninstitutionalized U.S. residential population, aged 12 and older. The report goes into some detail on the methodology used to collect and interpret the data and the limitations on estimating the rate of crimes against people with disabilities.

Additional estimates in the DOJ report show crime rates against people in different segments of the disability population. Those with cognitive and multiple disabilities were generally more likely to be victimized:

• During 2011-15, persons with cognitive disabilities has the highest rates of total violent crime (57.9 per 1,000), serious violent crime (22.3 per 1,000), and simple assault (35.6 per 1,000) among the disability types measured.
• During 2011-15, while 49% of persons with disabilities had multiple disability types..., an estimated 54% of violence against persons with disabilities occurred against those with multiple disability types. 
• Sixty-five percent of rapes or sexual assaults against persons with disabilities were committed against those with multiple disability types, the highest percentage among the crime types examined.

Medicare: Beware of hidden charges for "observation services"

In Michigan, most adults with developmental disabilities are eligible for Medicaid as long as they meet the eligibility criteria based on the individual’s (not the family’s) income and other financial assets. In addition, when a parent of a “Disabled Adult Child” (or DAC) retires, dies, or is receiving Social Security disability benefits, the DAC is also eligible for social security benefits including Medicare. (This can be complicated, so take the time to find out more about eligibility criteria and how to apply for government disability benefits, starting with the Website for the U.S. Social Security Administration .) 

According to the Social Security Website on Benefits for a Disabled Child , “An adult disabled before age 22 may be eligible for child's benefits if a parent is deceased or starts receiving retirement or disability benefits. We consider this a ‘child’s’ benefit because it is paid on a parent's Social Security earnings record.”

My son Danny has had multiple emergency room visits and hospitalizations over the last 6 months. After one visit to the ER he was placed in a hospital room for observation for two days. This was the first I had heard of this category of care. Because of the severity of Danny’s disabilities and his inability to work or pay for services, he is not billed for hospital or emergency room care - everything so far has been covered by Medicaid and Medicare.

It is possible, however, for people covered by Medicare to be charged for services they did not know they would be responsible for ahead of time.

A class action lawsuit brought by Justice in Aging is proceeding through the courts to determine the appeal rights of patients who have been charged for “observation services”, often without their knowledge, and without the right to appeal the charges.

This is from a recent Justice in Aging email:

Nancy Niemi was hospitalized for 39 days after a visit to an emergency room. She’s 84-years-old and eligible for Medicare. The hospital, however, categorized her as an outpatient receiving “observation services” for her entire stay. Medicare covers hospital care through an inclusive payment under Part A if the stay is classified as inpatient, but patients may incur unexpected cost sharing if the stay is classified as “outpatient” observation covered under Part B. Ms. Niemi was now in debt for thousands of dollars for her entire 39-day stay, and, in addition, Medicare does not permit beneficiaries to appeal when they are classified as receiving observation services when they are in the hospital, so she had no way to challenge the lack of coverage.

Due to a federal court decision issued last week, Nancy Neimi is now a member of a nationwide class of hospital patients who may gain the right to appeal their placement on observation. Hospitals commonly classify patients under observation, and, until March of this year, often without their knowledge. This practice has left many older adults and others with thousands of dollars in surprise bills not just for the hospital stay, but also medicine and other services received while classified as under observation. Class members could number in the hundreds of thousands. One study found that, in 2009 alone, 918,180 Medicare beneficiaries experienced observation stays.

Justice in Aging filed the original lawsuit (now named Alexander v. Price) along with the Center for Medicare Advocacy in 2011. The case was initially dismissed, but plaintiffs appealed to the 2nd Circuit and prevailed. The case is now going forward on the Due Process claim. Specifically, the plaintiffs allege that Medicare must allow beneficiaries to challenge the decision they are only receiving observation services. The class certification order was issued on July 31, 2017 and can be read here.

If you have a client who you think may be a member of the class, you can submit their story here. Otherwise, no action is required at this time. We’ll keep you updated on the case as it moves forward.

Update on Health Care/Medicaid votes in the U.S. Senate

From the national ARC news letter, Capitol Hill Insider for the week of July 24th, 2017:

Health Care/Medicaid - Senate Vote on Health Care Repeal Planned for This Week

The Senate continues to try and move forward on a plan to repeal the Affordable Care Act (ACA). On July 17, plans to repeal the ACA and cap Medicaid were put on hold when four Republican Senators announced their intent to vote "no" on a motion to begin debate. The next morning, Senate Majority Leader Mitch McConnell (R-KY) announced that there would be a vote on Obamacare Repeal Reconciliation Act (ORRA), which does not include Medicaid per capita caps, but does repeal Medicaid expansion, the increased federal match for the Community First Choice option, the individual and employer mandates, the premium tax credits, and a number of other provisions. The bill would not take effect for two years, giving Congress time to develop a replacement. However, it is unclear whether insurers will continue to participate in the market when the long-term framework is unknown. Within hours of this announcement, three Republican Senators announced their opposition to voting to repeal and delay replacement with a new plan.

Senate Majority Leader McConnell then announced that there will be a vote on a motion to begin debate early this week. It is unclear whether the vote will be on the ORRA or a revised Better Care Reconciliation Act (BCRA). The Senate is also considering revising BCRA to includes $200 billion in non-Medicaid funds for expansion states in an effort to win support from Senators from the Medicaid expansion states. The Congressional Budget Office has evaluated the ORRA and BCRA and found that they will increase the number of uninsured Americans by 32 million and 22 million, respectively.

To further complicate the situation, the Senate Parliamentarian, who must review provisions to make sure they comply with the Senate rules, has found that several provisions could be challenged and would require 60 votes to keep them in the bill. The provisions include a prohibition of Planned Parenthood funding, ending the essential health benefits requirement in Medicaid, continuing funding for cost sharing subsidies, allowing states to change the requirement that plans spend at least 80% of premium income on health care, and the six- month waiting period prior to enrollment without continuous coverage. The Parliamentarian continues to review the bill and may issue additional findings. It is unclear if the Senate has the votes to pass any legislation at this point, but the leadership is expected to keep working to try and find agreement on repealing the ACA.

Diluting Guardianship Rights

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

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

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

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

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

Diluting Guardianship Rights

TO: American Bar Association Commission on Law and Aging

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

DATE: January 14, 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sincerely,

Sam Golden
Chair, VOR Government Affairs Committee