The Need to Assure Choice and Quality in Residential Settings

Preliminary Response • HHS • DOJ • AHLA conference

by Peter Kinzler, VOR Second Vice President, VOR Legislative Committee

for Non-Traditional Care Models/New Freedom Initiative Session
Long Term Care and the Law
American Health Lawyers Association

February 18, 2004

Thank you very much for allowing me the opportunity to address you all today. I represent the Voice of the Retarded. I serve as a board member of the organization, and have for 10 years. My allegiance to VOR stems from the other hat I wear - as a father of a blond, blue-eyed profoundly retarded 28-year-old son with Angelman Syndrome who is a resident of the Northern Virginia Training Center. I have found VOR to be the only national organization that truly and consistently represents my son, supports the services he needs, and respects my decisions as his father.

How is VOR different from other organizations? VOR supports a full array of residential and other support options. We support the right of individuals with disabilities, including mental retardation, to own their own home, reside with their family, receive group home services, have supported living arrangements, or receive facility-based care, depending on their abilities and wishes. Choice to meet the needs and desires of people with disabilities is our bottom-line. We respect individual choice, with family/guardian input and decision-making, where appropriate.

I offer that brief introduction so that you can better understand my perspective throughout today’s presentation and panel discussion.

People with disabilities are not a homogenous group

To begin, we need to be clear on what we mean when we say "people with disabilities."

People with disabilities are not a homogeneous group and should not be treated as one. They include people with physical disabilities, mental illness and mental retardation. Just within the category of mental retardation are people who, with limited assistance, can go to work every day and those like my son Jason who will never know their own name, cannot be toilet trained and need 24 hour around-the-clock care for their physical and medical safety.

Over a year ago, VOR was pleased to participate in a coalition with the American Health Care Association (AHCA), the National Center for Assisted Living, the American Association of Homes and Services for the Aging, and the American Network of Community Options and Resources. This effort, coordinated by AHCA, resulted in a Joint Statement, "Working to Ensure That the Promise is Delivered."

The question of "disability" and how that is defined was of critical importance to this coalition’s efforts. The Introduction section of the Joint Statement tackled this question directly, as follows:

"The need for the development of a national, comprehensive strategy that focuses on people with disabilities in the United States is clear. ‘Disability,’ as defined by the Americans with Disabilities Act (ADA), is the presence of one of more physical or mental impairments that limits a major life activity. This definition encompasses individuals of all ages who have cognitive, mental or physical disabilities that result in different types and levels of impairments, and include, for example, mental illness, brain injury, autism, mild to profound mental retardation, cerebral palsy, dementia and spinal cord injuries. Long term supports and services must reflect this broad range of disabilities, be designed to meet the needs of the individual, promote choice and inclusion, and be flexible enough to accommodate the changing needs of the individual over time.

"A responsible and reasonable national strategy should reflect a heterogeneous population whose needs change over time and should include access to appropriate medical and technological advancements and services and supports in a full range of settings."

The purpose of making distinctions among the different disabilities is not to imply that some needier individuals are more deserving of services. This discussion is not about who should be first in line for services. Rather, the question as to need must be posed to assure that all individuals receive services appropriate to their particular needs and, as important, that the policies and budgets at the federal and state levels which direct the provision and availability of services are reflective of varying needs.

Let me be more concrete. A person with physical handicaps, such as Harriet McBryde Johnson, the author of the moving article The Disability Gulag that was published in The New York Times magazine section last year, has totally different needs than my son. She may need some assistance in dressing, toileting and preparing food but clearly has the intellectual capacity, with such assistance, to earn a living. Her needs are far different from those of my son Jason, who functions at the level of a one year old. He needs full-time care to make sure he is fed, dressed, properly toileted and protected against the ingestion of inedible objects that, if left to his own devices, he would swallow. Public policy should not treat them the same merely because they would fit into a box we call "people with disabilities." It should tailor assistance to their very different needs.

Regrettably, public policy does not always reflect this wide range of service needs. For example, some families of persons with severe and profound mental retardation who receive ICFs/MR services are concerned about dogmatic deinstitutionalization policies that ignore or expressly eschew the specialized and intense services required by these individuals that many of their family members believe can be found only in ICFs/MR.

The Olmstead Decision

Recognizing diverse needs and respecting choice are principles that are firmly established in federal law. In particular, the 1999 Supreme Court issued a landmark decision that is well known in disability circles, including to all of you here.

In Olmstead v. L.C., the Supreme Court said that "unjustified institutionalization" of people with disabilities is a violation of the ADA. Every advocate and legal expert agrees that the holding in Olmstead applies to all persons with disabilities of all types and levels: physical, cognitive, elderly, mild and severe. Although the individual plaintiffs experienced mental retardation and mental illness, the ruling itself had far broader implications. The Court was express in its recognition of varying needs and emphasized choice in residential settings, from institutional care to community and home care. Specifically, the Court wrote, "nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." Olmstead v. L.C., 119 S. Ct. 2176, 2187 (1999). Moreover, nothing in the Olmstead decision negates the legally-established role of individuals and family members and guardians of people with mental retardation as primary decision-makers regarding services, supports and policies impacting their loved one's care.

Federal and state policies to implement Olmstead should, accordingly, focus on choice and quality and not force people against their will into a model of care based on ideology. To some extent, the Department of Health and Human Services has done well to embrace the spirit and letter of Olmstead.

President Bush announced The New Freedom Initiative on February 1, 2001, as part of a nationwide effort to remove barriers to community living and participation for people with disabilities. This initiative, still ongoing, focuses on barriers to education, employment, recreation, technology and other impediments to participation based on ability. Included in the broad goals of The New Freedom Initiative is a consideration of Olmstead and its requirements with regard to community living. President Bush identified "swift implementation" of Olmstead as a priority in his New Freedom Initiative report. This declaration was followed up with the Olmstead Executive Order, released by President Bush on June 19, 2001.

The Olmstead Executive Order supports a full range of residential care options for people with mental disabilities, consistent with the Supreme Court's decision. While emphasizing the need for expanded community-based options for those individuals choosing and needing that level of care, the Executive Order, like the decision it reflects, recognizes that institutional care is appropriate for some people with mental retardation:

"Specifically, designated agencies should work with States to help them assess their compliance with the Olmstead decision and the ADA in providing services to qualified individuals with disabilities in community-based settings, as long as such services are appropriate to the needs of those individuals." Olmstead Executive Order, Sec. 2(a) (emphasis added).

Citing the holding in Olmstead, section 1(d) of the Executive Order, indicates that institutional placement remains proper whenever treatment professionals so determine; when the individual concurs; and when the affected state can reasonably accommodate the placement.

Federal and state policies relating to choice

Although Olmstead is discussed correctly in much of the HHS New Freedom Initiative materials, any initiative that focuses exclusively on moving people out of facilities into the community -- rather than on making sure that people with disabilities have a range of quality settings to choose from -- leaves families of people with mental retardation who reside in facilities residents worried about the government’s commitment to choice and quality.

In order to understand our perspective, you need to understand who resides in ICFs/MR for people with mental retardation today and what the conditions are like there. First, they are not people like Harriet Johnson who, with limited assistance, can function effectively in the community. They are people like Jason who cannot survive without 24-hour care and support from a broad range of professionals. The days of warehousing mildly and moderately retarded people in institutions are gone; roughly 90 percent of the residents are now people with severe and profound retardation who are often medically fragile.

Most inappropriately placed people have long since been moved into the community. Moreover, thanks to Medicaid funding, and the accompanying hundreds of pages of regulations, the term "institution," which conjures up visions of people chained to beds, no longer applies. They are no longer called institutions because they no longer warrant the name. They are training centers and care centers. They are homes for our children, with well-trained and caring staff and experts who provide quality care. As parents, we, not the professional community advocates, are the people who know the conditions best and most of us want to maintain the training center option. That said, many in VOR have children who reside in the community. We don’t want governments or professionals making the decisions as to where our children can receive the best care and maximize their abilities. If the government helps assure quality care in a range of residential settings, then the parents and guardians of people with severe and profound mental retardation will have the choices necessary to make sure their relatives have the best quality of life possible.

We are also wary of community-only initiatives because most such state efforts have resulted in the closure of facilities for people with mental retardation and their forced movement into the community, over the objections of their relatives and guardians. Too often the result has been disastrous for those moved, as they have suffered abuse and death.

The federal focus on community living has raised our antenna. Let me just cite a couple of recent headlines and quotes to illustrate the point:

"The Real Choice Systems Change Grants for Community Living will help states and territories enable people with disabilities to reside in their homes and fully participate in community life." HHS Press Release, October 2, 2003.

"President will propose $1.75 billion program to help transition Americans with disabilities from institutions to community living," HHS Press Release, January 23, 2003.

Let me be clear. VOR supports these programs to the extent they strengthen the home and community-based system of care for people who need and want that level of care without diminishing the availability of ICFs/MR services. However, as I mentioned, it has been our experience that the pursuit of enhanced community services often comes at the expense of the ICFs/MR option and that placement in the community, without regard to preparedness and choice, is often blindly pursued.

To the credit of HHS, there has been some acknowledgment of the need to enhance the community-based infrastructure to assure its preparedness to safely and compassionately serve those transferring from facilities and the hundreds of thousands on the waiting list for community services.

In July, 2003, Secretary Thompson announced the provision of state grant money to enhance the training and retention rates of personal assistance workers. In October 2003, that grant money ($6 million) was awarded to select states. In the HHS "Delivering on the Promise" report, as part of the New Freedom Initiative, there is ample recognition of the need to enhance respite opportunities for caregivers and improve overall quality of care in the community. For the past several years, CMS has been working on quality of care initiatives aimed at identifying, assuring and improving quality of care in the community.

By and large, however, debates revolving around community v. institutional care seem to gravitate toward a place where a choice between the existence of one or the other becomes central to the debate. It doesn’t - and shouldn’t - have to be that way. Both settings are needed.

If federal and state policies result in the closing of institutions, the result will be fewer choices for people with mental retardation and longer waiting lists because there will be no cost savings from moving people from institutions into the community - unless their level of care is reduced below what they need to enjoy safe and productive lives.

Cost Comparison Study

A 2003 peer-reviewed cost comparison study of community versus institutional residential settings for people with mental retardation by Kevin Walsh of the Developmental Disabilities Health Alliance, Cost Comparison of Community and Institutional Residential Settings: Historical Review of Selected Research, found that "community placements are not inherently less expensive than institutions." Dr. Walsh reached this conclusion by establishing "apples to apples" comparisons, examining the costs for the same kind of people (e.g., only those with severe and profound retardation rather than those with severe and profound retardation living in institutions versus all other people with mental retardation, including those with mild and moderate retardation, living in the community) and the same constellation of services, rather than just the funding source (i.e., while there may be only one funding source for all services in an ICF/MR, there may be multiple funding sources when those same services are provided in the community and all of them must be counted to provide a true comparison).

Dr. Walsh concluded that cost is the wrong question; rather, "the questions that need to be asked revolve around the individual (i.e., What does this person need? Where is the best place to provide for these needs?’ And ‘at what cost?’)."

Simply put, the provision of necessary services must be based on needs. Once needs are identified, using the tools outlined in the cost comparison study, total cost for care to meet these needs can be determined.

This is an enormously important study for policymakers because, if costs are comparable (unless quality is reduced), then policy should focus on serving needs rather than on physical location. It’s not very different than making a decision whether to go to a large university or a small college. Each institution has its advocates and the ability of students to select which is best for them assures that each kind of school will continue to meet the needs of its students.

Money Follows the Individual Rebalancing Initiative

One federal proposal deserves broader mention.

President Bush’s "Money Follows the Individual" Rebalancing Initiative is positive in its goal of increasing community options and its recognition that this cannot occur without the infusion of additional resources. VOR members, however, are concerned that the initiative targets the wrong population. Under its present form, the Administration’s proposal only extends to individuals currently receiving care in "in-patient facilities." While the community is undoubtedly a far better place for most people with physical handicaps who have been forced into nursing homes because of the lack of community funding, that is decidedly not the case for people with mental retardation. As I indicated earlier, the vast majority of these individuals and their families are satisfied with their present living arrangements and do not want to be forced out of ICFs/MR due to the availability of some new grant money. If not properly implemented, this program could prove to be another example of a one size fits all solution for a highly heterogeneous population. If people are forced out of training centers, the continued existence of the centers will be placed in jeopardy because, if they are not open to others to replace them, then the fixed costs of the training centers for a smaller population will make them unaffordable

Instead, the Administration and Congress would help more people with disabilities were they to expand their Money Follows the Individual proposals to cover also programs to move people off the waiting lists, including the estimated 200,000 people with mental retardation, and other programs to serve people in the community, such as the programs for improved medical care. This broader focus would do far more to enhance and expand the community-based services infrastructure than the more narrowly based Money Follows the Individual Rebalancing proposals.

Conclusion

In sum, public policy should focus on increasing choice and assuring quality. If quality options are created, then people with disabilities and their relatives and guardians will truly be able to pick what is best for them.

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