Thursday, August 27, 2015

The Olmstead right of individual choice and the duty of guardians: Whose choice is it?

From the VOR Website:

August 2015

Without question, the 1999 U.S. Supreme Court Olmstead decision requires that community placement not be imposed on individuals who do not desire it. The Olmstead right of individual choice is clear, but what about situations where the individual with an intellectual or developmental disability (I/DD) has a legally appointed guardian?

While the role of guardians in advancing the right of individual choice has been debated, the law clearly supports the right and duty of guardians to make decisions on behalf of their individual in their best interest.

The Americans with Disabilities Act (ADA) and Olmstead

25 years ago, the ADA was passed to prohibit discrimination on the basis of disability by public entities (Title II) and in employment, transportation, public accommodations, and communications.  ADA regulations for Title II indicate that a “public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” [Integration Regulation, 28 CFR § 35.130(d) (1998)].

In Olmstead v. L.C., 527 U.S. 581 (1999), the U.S. Supreme Court considered the scope of the ADA and its Integration Regulation. The issue before the Court was “whether the [ADA’s] proscription of discrimination may require placement of persons with mental disabilities in community settings rather than in institutions.” (Id. at 587) 

Answering this question with a “qualified yes,” the Court held that the ADA requires community placement only when “the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.” (Id., emphasis added).

Defining Individual Choice and the Role of Guardians

As highlighted above, the Supreme Court held that individual choice is a prerequisite to community placement, explaining further that there is no “federal requirement that community-based treatment be imposed on patients who do not desire it.” (Id. at 602) Nowhere in the decision, however, is the role of guardian discussed.  Attorney Patricia G. Williams found the Court’s silence on this point telling:

“Absent some clear direction from the U.S. Supreme Court to the contrary, we must conclude that the laws pertaining to guardianship, conservatorship, durable powers of attorney and advance directives remain intact.” (Patricia G. Williams, Esq., September 6, 2000)

Even prior to its Olmstead decision, the Supreme Court held high the perspective of families and legal guardians (often family members), in residential placement decisions:

[C]lose relatives and guardians, both of whom likely have intimate knowledge of a mentally retarded person's abilities and experiences, have valuable insights which should be considered during the involuntary commitment process. Heller v. Doe, 509 U.S. 312, 328-29 (1993) [see also, Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C. 15001(c)(3)(1993) (“Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families” (emphasis added)].

Sam Bagenstos, a former Department of Justice attorney and well-known proponent of deinstitutionalization, also noted that while Olmstead and ADA regulations refer to the choice of the “individual with a disability,” one could argue that these same sources “should be interpreted in light of the background state-law principle that guardians can make decisions for their wards.” [Bagenstos, S., "The Past and Future of Deinstitutionalization Litigation," Cardozo Law Review (Vol. 34:1) (2012)].

According to Bagenstos, “courts have not definitively resolved this question, though a number have suggested that it is the guardian’s choice that matters.”  One such case is U.S. v. Arkansas, in which a Federal Judge, pointing to the strong support of the residents families and guardians of continued placement at Conway Developmental Center (and opposition to community placement), dismissed the Department of Justice’s claims that residents of Conway were “unjustifiably institutionalized”:

  • “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.” [U.S. v Arkansas, 794 F.Supp.2d 935 (E.D. Ark. 2011) at].
Likewise, in People First of Tennessee v. Clover Bottom Developmental Center, the Court considered the right of individuals to reject a community placement. Noting that the “intersection of citizen choice and the ADA was addressed by the Supreme Court in Olmstead v. L.C.,” the Court addressed whose choice mattered by quoting an “eloquent” argument in a brief submitted by the Parent Guardian Association:
  • “’Conservators [and guardians] - who have the longest and most meaningful relationship with their loved ones and the greatest investment in their well-being - are in the best position, after considering the recommendations of professionals and any other relevant facts, to assess the risks and exposure of the less protective environment of community settings against any benefits community settings may provide for that particular individual and to make an informed decision as to whether to exercise the disabled person’s right on his/her behalf to decline community placement.’” [People First of Tennessee v. Clover Bottom Developmental Center, 753 F.Supp.2d 701, 711 (2010) (quoting PGA)].
In receiving petitions for intervention submitted by families and guardians on behalf of their family members with profound developmental disabilities, federal courts have been accepting of their role in representing the interests of their family members and wards [see e.g., Ligas v. Maram, No. 05 C 4331, 2010 WL 1418583 (N.D. Ill. Apr. 7, 2010); Benjamin v. Department of Public Welfare, 701 F.3d 938 (3d Cir. 2012); and United States v. Virginia, 282 F.R.D. 403 (E.D. Va., 2012)]; and families and guardians are allowed to initiate lawsuits on behalf of their family members and wards with I/DD (see e.g., Olmstead, 527 U.S. 581 (plaintiffs, individuals with cognitive disabilities, were represented by a guardian ad litem; and Sciarrillo, et al. v. Christie, et al. (2013) (on behalf of 35 individuals with I/DD, all represented by family members and guardians).

More recently, in January 2014, the Centers for Medicare and Medicaid Services released its final Home and Community Based Services (HCBS) regulation that defines the settings in which people with I/DD can receive Medicaid-funded HCBS. The regulation places the individual with a disability at the center of the person-centered planning process, allowing for the reality that many people with I/DD are limited in their ability to make or communicate decisions for themselves or to exercise their rights on their own behalf and for whom legal guardianship may be necessary:

  • “We note that where a legal guardian, conservator, or other person has the sole authority under state law to make decisions related to the individual’s care, the state must comply with the decisions of the legal surrogate.” [79 Fed. Reg. 2996 (January 16, 2014); see also, 42 C.F. R. 441.735 (a) (In this subpart, the term individual's representative means, with respect to an individual being evaluated for, assessed regarding, or receiving State plan HCBS, the following: (a) The individual's legal guardian or other person who is authorized under State law to represent the individual for the purpose of making decisions related to the person's care or well-being. In instances where state law confers decision-making authority to the individual representative, the individual will lead the service planning process to the extent possible.]


The role of guardianship is increasingly under attack. Although initiatives to promote self-determination, person-centered planning, and self-advocacy encourage personal decision-making by the individual with a disability, they do not override the authority of legal guardians to make determinations authorized by state courts in guardianship proceedings, despite claims to the contrary by some disability advocates. Blanket assertions that all individuals with disabilities are capable of making all decisions for themselves, regardless of their level of cognitive disability, are not supported by reality. As a result of discouraging the use of guardianship, some individuals are exposed to the risk for abuse, neglect, and exploitation that guardianship is designed and intended to prevent.

“Supported Decision-Making” is another initiative that purports to replace the need for guardianship with less formal supports. As a replacement for guardianship for people who have cognitive disabilities that impair their ability to make decisions, it could expose vulnerable individuals to the risk of having decisions made for them by agency personnel whose own convenience and interests may conflict with the best interests of the individual.

In a recent blog, Aaron Bishop, the Commissioner of the Administration on Developmental Disabilities, promoted supported decision-making, “a process of working with the person to identify where help is needed and devising an approach for providing that help.” Regarding guardianship he writes, “[t]he trouble with guardianship is that it is a legal process.”

In fact, it is the legal process that protects an individual from unnecessary guardianship and from abusive guardians. Legal guardians are charged by a court to advance the individuals’, not the guardians’, best interests. Failure to do so is cause for removal.  In court filings and actual decision-making, the guardian and individual are considered one and the same, with aligned, not divergent interests.

Federal law has consistently upheld the right of service choice and supports the important decision-making role that families and legal guardians play in supporting their individuals with I/DD. Olmstead certainly did not change that.

For more information, please contact:

Jill Barker, VOR Officer
Chair, Issues Oversight Committee

Julie Huso, VOR Executive Director

The Community Choice Coalition Statement on the 25th Anniversary of the ADA

This is from the Community Choice Coalition Blog, by Desiree Kameka, 8/7/15.


In almost two decades [and] since Olmstead, self-advocates, parents, legislators and others have worked together to change regulations, laws and develop new ways of thinking about support services so individuals with disabilities can have more choices and control of their lives. Coalition for Community Choice is a national collaboration of more than 125 organizations, businesses, housing developers, providers and advocates who want to increase options and decrease barriers to housing and employment choices.

Today, individuals with I/DD may have the option to live alone or with roommates in their own home or apartment, in a group home, in an adult foster care home, on a farmstead or ranch, or on a supportive living campus setting, all with supports they need to be able to interact with the greater community to the fullest extent possible. But four years from now this may not be true. [emphasis added]

Recent changes in federal and state regulations may limit what constitutes an integrated residential setting. The Centers for Medicare and Medicaid Services (CMS) issued new requirements about housing and employment settings that states have five years to implement through State Transition Plans. For a person with I/DD, these changes may have the unintended consequences of reducing the options available and increasing barriers to that individual’s right to choose his or her preferred setting.

Affordable, supportive housing will be one of the most acute areas to be addressed in the next 25 years of the ADA, and it may prove to be a frustratingly elusive target. A snapshot of the statistics sizes the challenge. According to the 2013 State of the States in Developmental Disabilities report:
  • There are 4.9 million adults with I/DD in the U.S.
  • Of the 4.9 million, 3.5 million live with family caregivers, and 853,000 of these family caregivers are 60 years of age or older and may soon need their own caregivers
  • 77 percent of the 3.5 million receive no residential supports
  • Only 244,195 additional residential placements were funded from 1994-2011
Rather than mitigate the housing crisis, in the 25 years since the ADA and 16 years following the Olmstead decision, the number of adults with I/DD on a waiting list for, but not receiving, residential services has increased more than 66 percent…

Read more…

Wage Protections for Home Care Workers Reinstated

This is from an article in Disability Scoop by Michelle Diament, August 21, 2015:

…A federal appeals court has upheld a rule requiring that in-home care workers assisting people with disabilities be paid minimum wage and overtime.

…Labor Department regulations issued in 2013 extended minimum wage and overtime protections to home care workers for the first time. Under the rules, most caregivers must receive at least the federal minimum of $7.25 per hour and qualify for time-and-a-half if they work more than 40 hours per week.

The wage protections …were struck down in January by U.S. District Judge Richard Leon who said the Labor Department had overstepped its authority.

On Friday, however, a three-judge panel found otherwise…Trade groups representing agencies that employ many in-home care workers brought the court challenge. They said the pay hike could make such care unaffordable.

Some self-advocates have also argued that the pay increase could leave people with disabilities without the care they need to remain in the community.

Read the full article...

There is more to this story:

The lawsuit to stop the Department of Labor wage and overtime regulations from going into effect was brought by the Home Care Association of America, ADAPT, a disability rights group, and the National Council on Independent Living filed a brief against the Department of Labor regulations and supporting the Home Care Association.

In an earlier article from Disability Scoop, January 2015, ADAPT made this statement:

“The Department of Labor developed this rule without adequate involvement of the disability community which was concerned that without additional Medicaid funding, attendants would lose income that is vital to their lives and individuals with disabilities would be forced into institutions...ADAPT stands ready to work with organized labor and worker groups to fight for improvements in attendant wages and benefits in a manner that doesn’t sacrifice the rights and freedom of people with disabilities.”

Home Help Services is a mandatory Medicaid-funded service, meaning that it must be provided to all eligible people on Medicaid. That includes people with disabilities who live in their own or their family's home who need in-home service providers who can assist with daily activities. The question is, will the federal government and the States increase funding to cover the extra costs of home care, or will they avoid the problem by cutting the number of hours available to people with disabilities or making other adjustments that interfere with people getting the services they need?

Wednesday, August 19, 2015

Comments on the Interim Report from the National Quality Forum on HCBS

The National Quality Forum has received funding from the U.S. Department of Health and Human Services (HHS) for a two-year project to "address the gap in Home and Community-Based Services [HCBS] measures that support community living". 

According to the NQF website:

NQF will collaborate with a multi-stakeholder committee to:  
  • Create a conceptual framework for measurement, including a definition for HCBS;  
  • Perform a synthesis of evidence and environmental scan for measures and measure concepts; 
  • Identify gaps in HCBS measures based on the framework; and, 
  • Make recommendations for HCBS measure development efforts. 
On July 15, 2015, the HCBS Committee released its first Interim Report called "Addressing Performance Measure Gaps in Home and Community-Based Services to Support Community Living"

These are the comments I made on behalf of my two adult sons who have profound developmental disabilities and my family. 

To begin with, it does not appear that anyone on the HCBS Committee Roster is a recipient or relative or guardian of a person who receives HCBS. If this is the case, there should be an addition of more people who could give the committee insights into how these services are delivered and their quality from the perspective of people who receive them.

Consumer Preferences:

From the Executive Summary: “Consumer preferences and the policy environment also continue to favor community living over more restrictive environments.”

Preferences vary depending on the needs of the person with a disability and the ability of the family and community to provide for those needs in the least restrictive environment. Environments that may be restrictive for one person may be liberating for another. The determination of least restrictive environment is meaningless without taking into consideration the needs of the individual. Arbitrary standards regarding size and location of a setting do not serve to assure the broadest range of options necessary to serve individuals with DD.

The “policy environment” has limited the options available. Many, if not most, states restrict admissions for people with DD to Intermediate Care Facilities for IID and Skilled Nursing Homes. These settings that provide an institutional level of care could be serving a greater number of people who do very poorly in community settings, but that option has been closed off. The new CMS rule on HCBS, when it is fully implemented in 2019, could severely limit options in the community that are currently available to many people with the most severe disabilities. This is not a matter of personal preferences being in favor of these limitations, but instead comes from an ideological perspective that favors the federal government imposing these beliefs on everyone regardless of their needs or preferences.

In addition, the unavailability and poor quality of community services is a factor in families deciding that the only way to adequately serve their loved one with DD in a safe environment is to keep them at home. This is not necessarily a “preference”, but an unfortunate reality.

Definition of Home and Community-Based Services:

The term “home and community-based services” (HCBS) refers to an array of long-term supports that promote the independence, well-being, and choices of an individual of any age who has physical, cognitive, and/or behavioral health needs and that are delivered in the home or other integrated community setting.

Of the definitions considered as a basis for HCBS in this report, the one that was decided on by the committee is the least accommodating of the full range of disabilities that must be served. It does not recognize, for instance, that promoting independence is for some people with cognitive or other complex disabilities a fruitless endeavor and that achieving only a small measure of independence or never achieving that goal does not diminish the need for specialized services and care, nor should it diminish the perceived worth of the individual.

For contrast, this is the definition from the AARP Public Policy Institute:

“Home and community-based services (HCBS) refer to assistance with daily activities that generally helps older adults and people with disabilities remain in their homes. Many people with LTSS needs require individualized services or supports to live in a variety of settings: their own homes or apartments, assisted living facilities, adult foster homes, congregate care facilities, or other supportive housing.”

This definition at least acknowledges that a variety of settings may be needed by people with a range of disabilities and that these settings, whether or not they are considered “congregate”, are “home” to the people who live in them.

This would have been a better choice to serve the full range of people with disabilities.

“Over-medicalizing HCBS” and “the dignity of risk”

The concern about “over-medicalizing” HCBS would not be a concern if there was a genuine belief that the system of HCBS would be person-centered. One person’s need for extensive medical care and supervision might be directly connected to their survival and enjoyment of life. Another person who does not need or desire that care, should not be forced to accept overly regimented medical care as a condition of receiving services that enhance their enjoyment of life. The degree of medical care and supervision needed is a highly individualized determination and should not affect how others who do not need or desire medical intervention are served.

For people who are at high risk for abuse, neglect, and physical injury, including those with severe and complex cognitive and behavioral disabilities, there is no “dignity” in ignoring those risks or requiring the person to experience risks that can be reasonably anticipated in order to prove that the risks are real and must be ameliorated. Again, these determinations depend on individual needs.  One person’s needs should not prevent another person from being served appropriately in an HCBS system.

Domains of HCBS Quality Measurement

If the list of Domains of Quality Measurement are in order of priority, this list does not take into account individual priorities in HCBS. For my sons, the most important domains are Human and Legal Rights that assure appropriate care and freedom from abuse and neglect, Health and Well-being, Service Delivery, Effectiveness/Quality of Services, and System Performance. The priorities should be set for individuals and not as a standard to measure whether quality HCBS are being provided.

Suggestions for consideration of HCBS Quality Measurement

The HCBS Committee should broaden its understanding of the range of disabilities that are served in the HCBS system and acknowledge differences in need that directly affect the quality of services and ultimately the quality of life for the individuals served.

One major concern in the collection and analysis of data on HCBS services, is that state and local agencies typically evaluate their own programs based largely on self-reporting by a network of providers. Where is the incentive to report the “bad news” about abuse, neglect, medical errors, and generally poor quality care? There needs to be an independent agency, different from the one charged with administering or providing supports. This independent agency would have incentives to adapt to changing conditions, game playing with the rules by providers, and other sources of erosion of protections.  Such an agency would also act to bolster credible reasons for needing protections and health services so that the administrative agencies would not sound so self-serving when asking for adequate resources from legislators.

Sunday, August 16, 2015

Federal Health Privacy Law: Misused and Misinterpreted

The Health Insurance Portability and Accountability Act of 1996, or HIPAA, as it is more commonly known, protects the privacy of patients’ identifiable health information. At the same time, it permits the disclosure of health information needed for patient care and other important purposes. In an article by Paula Span in the New York Times, 7/17/15 entitled “Hipaa’s Use as Code of Silence Often Misinterprets the Law”, describes how the law is misused and abused: “‘It’s become an all-purpose excuse for things people don’t want to talk about,’ said Carol Levine, director of the United Hospital Fund’s Families and Health Care Project, which has published a Hipaa guide for family caregivers."

After citing many examples of how the law is misused, Span sets the record straight:
  • The law does not prohibit health care providers from sharing information with family, friends or caregivers unless the patient specifically objects.
  • Hipaa applies only to health care providers, health insurers, clearinghouses that manage and store health data, and their business associates. A spouse talking in a public place about her husband’s medical problems or a church publishing the names of hospitalized parishioners are not violating HIPAA.
  • Family members can provide information - “‘How does keeping information confidential stop you from listening to someone?’” said Eric Carlson, the directing attorney for Justice in Aging, a legal advocacy group in California. ‘There’s no Hipaa privacy consideration there.’”
  • When a caregiver is denied access to medical information, the "caregiver’s strongest defense, …is to be the patient’s personal representative — a health care proxy or guardian, or with power of attorney — or to have the patient authorize the release of information. In such cases, providers must comply."
  • An assisted living facility or nursing home can report a death or give someone’s general condition and location, assuming the patient remains within the facility.

Representative Doris Matsui, Democrat of California, hearing complaints about HIPAA from constituents, has introduced legislation to clarify who can divulge what and under what circumstances.

Read the full article here…
Paula Span writes The New Old Age column for the New York Times

Tuesday, August 11, 2015

Federal agency releases final rule on the Developmental Disabilities Act of 2000

The federal Administration on Intellectual and Developmental Disabilities (AIDD) has released the final rule for The Developmental Disabilities Assistance and Bill of Rights Act of 2000. 

The DD Act, which this rule clarifies, does not fund direct services to people with developmental disabilities except when those services are incidental to the activities of DD Act programs. Those programs include State Councils on Developmental Disabilities, State Protection and Advocacy Systems, UCEDDS (University Centers for Excellence in DD Education, Research & Service), and Projects of National Significance. 

The “new” rule for the DD Act of 2000 was first proposed, commented on, and then closed for comment in 2008.  The final rule includes technical changes arising from the Affordable Care Act and other recent legislation and reorganization within federal agencies. 

These are links  to the final rule and the DD Act Final Rule Toolkit from the AIDD.

The DD Act of 2000 was scheduled to be reauthorized in 2007. This did not occur, although funding for the act has continued. It has now been fifteen years since the DD Act and DD Act programs have been subject to reauthorization. Reauthorization by Congress is usually accompanied by extensive review of the Act, public hearings, and solicitation for proposals for reform. 

DD Act programs and many agencies and organizations funded by the DD Act, in promoting self-determination, independence, and systems change for people with developmental disabilities, have been criticized for disregarding individual choice and the legal right to appropriate services. The ideology of "full inclusion", the idea that all people with disabilities can be fully integrated into "the community", regardless of the severity or nature of the individual's disability, has been promoted by these programs along with support for the eventual elimination of specialized programs for people with DD. This ideology is not universally supported by individuals with DD and their families and often conflicts with their desire for appropriate services and settings based on individual needs and choice. 

In light of this conflict, Congress should provide the oversight that is expected in the reauthorization process and consider reforms to prevent DD Act programs from infringing on the individual rights of people with disabilities and their families.

Friday, August 7, 2015

Together for Choice Conference, October 21 - 23, 2015

Together for Choice

October 21 - 23, 2015
6300 N. Ridge
Chicago, IL 60660

Wednesday, October 21, Loyola University, Water Tower Campus
6 - 9pm    Networking Dinner * Kasbeer Hall, Corboy Law Center
                25 E. Pearson, Chicago, IL 60611

Thursday, October 22, Misericordia Heart of Mercy Campus
7:30am    Registration and Continental Breakfast

AM speakers and events:  

  • Welcome Address: Sr. Rosemary Connelly, RSM
    The Historical Challenge: One Size Does Not Fit All
  • Bill Choslovsky and Scott Mendel, Olmstead/Ligas/ADA Identifying Aspects that Support Choice
  • Tours of Misericordia campus
PM speakers and events: 
  • David and Susan Axelrod, Keynote Speakers 
  • Mark Olson, When Regulations and Policy Collide with Choice 
  • Sharing and Promoting Great Models and Best Practices
  • Synthesizing of Information - Next Steps
  • Cocktail Reception and Conference Dinner at Misericordia 
  • Self Advocates: Voices for Choice discussion
Friday, October 23, Misericordia Heart of Mercy Campus
 See the Conference Flyer for more information on the speakers, the Coalition for Community Choice, and registration

Sunday, August 2, 2015

Maryland: Physical fitness and people with disabilities

Teamwork is an integral part of the health and fitness program at Spirit Club, a gym in suburban Washington where most of the participants have autism, Down syndrome or other developmental disabilities.

“Our main focus is the same thing as any other gym, which is to help people be active and healthy," said Jared Ciner, who created the club in Kensington, Maryland, two years ago. "The difference is that we do modify a little bit to make sure that it is right pace for the people we are working with, so that everybody can follow along...."

Tiggy : 1998 - 2015

After 42 continuous years of dogs and/or cats, we are down to just us humans with no one left who needs to be fed, watered, and catered to. Tiggy, a.k.a."The Entitlement Cat", demanded that she be treated with the deference she deserved. She succumbed to kidney disease, but lived a full and luxurious life as an indoor/outdoor cat. 

In her later life, she developed a taste for vanilla ice cream. She only wanted 5 licks, about the amount left in the bowl after the human was done with it. If the human forgot to eat ice cream in the evening, at 9:30 p.m. she would start pacing back-and-forth, stopping only to give the human an icy stare to remind him that he had forgotten something. Sometimes the human by-passed his own enjoyment of vanilla ice cream and spooned out 5-licks-worth into a bowl, just to stop the cat from ruining his evening.

Oh, Tiggy. How we will miss you!