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Presentation to the Mental Health Study Commission

By

Beth Melcher, Director Government Relations

March 10, 2000

On behalf of NAMI North Carolina and the thousands of individuals and families we represent, I want to thank members of the study commission for the opportunity to speak to you about our concerns regarding the referral of people with mental illness into adult care homes. I appreciate your willingness to take on this difficult issue. This commission always has served as a forum for debate around complex issues. Time and again visionary solutions have emerged with the commission providing the leadership for action.

Currently there are 9,000 individuals with mental illness and/or developmental disabilities residing in Adult Care Homes. According to the Research Triangle Institute Study on Domiciliary Care published in 1995, one-third of all Adult Care Home residents are non-elderly, below the age of 65. The vast majority of non-elderly residents experience mental illness and developmental disabilities. Thanks to marvelous advances in treatment and support, individuals with mental illness can be expected, and want to live independently, with varying degrees of support services, within their communities. Adult Care Homes, on the other hand, were developed to care for an elderly population, a population becoming increasingly dependent as they age and become more medically fragile. The purpose and mission of Adult Care Homes are contrary to the needs of individuals with mental illness striving to gain independence and the greatest degree of self-sufficiency.

Individuals with mental illness, particularly the non-elderly, reside in great numbers within Adult Care Homes because North Carolina has failed to develop alternatives. Individuals with mental illness and their families are desperate to find housing. Placement in an Adult Care Home often is the only alternative to homelessness. State psychiatric hospitals seeking placement for individuals being discharged also find it necessary to place individuals into an Adult Care Home. The alternative, as reported recently in a series published by the Charlotte Observer, is to discharge people into homeless shelters. Last year 400 patients from state psychiatric hospitals were discharged to homeless shelters because there was no other place to send them.

In addition, Adult Care Home operators are increasingly seeking individuals with mental illness, identifying them as a "market" for an industry struggling with a 75-85% occupancy rate. While Family Care homes serve less than six individuals, Adult Care Homes are large aggregate settings with as many as 100 or more individuals in residence. According to the Research Triangle Institute study, 51% of Adult Care Home beds are in facilities with 41-100 beds and 17% are in facilities with over 100 beds. Essentially, these facilities are mini-institutions but without the medical or treatment programming or the oversight one would expect for a population with a long-term chronic but treatable illness.

We believe that the placement of individuals with mental illness, particularly those that are non-elderly, in large institutional adult care home settings is inappropriate. This past summer the United States Supreme Court made a ruling based on the Americans with Disabilities Act, in Olmstead v. LC, that individuals with mental disabilities determined by their treating professionals to be able to be appropriately served in the community, should be supported to do so. In a letter to state Medicaid Directors, the Department of Health and Human Services wrote, "This decision confirms what this Adminstration already belives; that no one should have to live in an institution or a nursing home if they can live in the community with the right support." The ruling called on the states to establish a plan to both identify and begin to develop services to meet the needs of individuals in institutions or at risk of entering one. North Carolina’s current practice of sticking people anywhere we can find, regardless of its appropriateness, is no longer acceptable.

Senate Bill 10 was perhaps one of the best and most important pieces of legislation approved by the General Assembly during its last session. The provisions in Senate Bill 10 seek to improve the safety and quality of care for residents in Adult Care Homes.

But for the first time, the bill specifically named people with "mental health disabilities" within the scope of Adult Care Homes. We opposed the inclusion of this term in the bill because we feared it would be viewed as an endorsement and would legitimize the expanded growth of adult care homes as a residential placement for people with mental illness and developmental disabilities.

We strongly supported provisions in SB 10 and the subsequent temporary rules, to improve medication administration, staff training in behavioral interventions, staffing ratios, and limits on the size of special care units. But some potentially positive provisions of SB 10 have, to date, had implementation rules that are incomplete and in some cases, inappropriate. Specifically,

• There will be an initial screening to assess all residents receiving special assistance for potential dangerousness. The vast majority of people with mental illness are not dangerous. But they do have treatment and support needs. It will not be until January of 2001 that we begin to phase in more comprehensive evaluation.

• The evaluation instrument that will be used for comprehensive evaluations is the Resident Assessment Instrument-Adult Care Home or RAI-ACH. This instrument was developed exclusively on an elderly population. Its validity on a non-elderly population is questionable. A related instrument being discussed is the RAI-MH. This instrument is so new there are no established personal care recommendations or outcome information to make it useful. The administration of these instruments requires highly trained individuals to be valid. It is not clear whether there are the funds or commitment to pay for the necessary training and personnel. The evaluation should be done by an independent evaluator, not Adult Care Home staff, in order to reduce conflict of interest in the development of care plans. The bottom line is that if the evaluation of people with mental illness is invalid or compromised we will be unable to determine whether they are placed appropriately nor will we know what their treatment and support needs are. This will directly impact whether we are in compliance with the Supreme Court’s Olmstead decision.

• The use and regulation of the use of seclusion and restraint in Adult Care Homes is not addressed in the legislation. Because of the high potential for abuse, this must be addressed in the rules or through separate legislation.

• Senate Bill 10 allows for the establishment of special care units, including those for people with mental health disabilities. But neither the legislation nor the temporary rules address what should be expected of these units except for putting a limitation on the number of individuals that can reside in such a unit. There are no rules regarding the type of staff, staff training, staffing levels, or program requirements for special care units.

• Of great concern is a provision in Senate Bill 10 which states: "nothing in this section shall be construed as prohibiting an adult care home that does not offer a special care unit from admitting a person with Alzheimer’s disease or other dementias, a mental health disability, or other special needs disease or condition." SB 10 covers only Adult Care Homes that market themselves as providing a special unit. This provision likely will promote a practice among adult care homes of encouraging individuals with mental illness to become residents but forgoing the development of special units. Ultimately this will result in the growth of institutional settings that simply warehouse people with mental illness.

While supporting and strengthening SB 10 and its implementing rules will go a long way to protecting and enhancing the lives of individuals currently residing in adult care homes, we must be vigorous in our efforts to develop a continuum of housing alternatives. People with mental health disabilities deserve true choices of safe and affordable housing. We often have heard cries of alarm that offering housing alternatives will be "too expensive." We already are paying in homeless shelters and jails, in family burden as families deplete life savings to pay for housing for a family member, and in special assistance payments for Medicaid eligible disabled people in licensed facilities. As often is the case with mental health service provision, there are some resources available, we have to look at whether we are using them in the best way. Other states have addressed the issue of developing alternative housing in far more creative and successful ways than North Carolina and we should learn from their experiences. In North Carolina, as in other states, we must increase the number of housing units available for people with disabilities who have extremely low-income status. This Commission could take a leadership role in this effort.

During the past month North Carolina has been shamed by the Charlotte Observer series documenting the lack of safety, services, management, and commitment to the public and private mental health system. Creating a situation where people with mental illness have no choice but to live in institutional Adult Care Home settings that do not meet their needs is just one aspect of a system that is failing its citizens. While we have taken a small step forward with SB 10, we must all commit to continuing our efforts to provide appropriate housing, treatment, and support services for people with mental illness.

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