Alison (Alya) Reeve, M.D.; Javier Aceves, M.D.; Alejandro Morales, M.S.W.; Jennifer Thorne-Lehman; Jennifer Vickers, M.D.
New Mexico has experienced an unequivocal call to move people with developmental disabilities from institutional care to living situations in the community. This is a social policy movement that is consonant with changes across many parts of the United States. It reflects a combined concern for the quality of medical and developmental care provided to people marginalized from society and a growing awareness of the appropriate inclusion of persons with developmental disabilities into the fabric of our communities. Our article will review some of the historical thinking about the uses and misuses of institutional care, the sequence of decisions and actions that characterized the deinstitutionalization process in our state, and will conclude with an assessment of the impact of social policies on the individuals with developmental disabilities in New Mexico. As a team of professionals, we are active players in this process of change. We hope that it is clear to the reader that we are presenting work in progress and analysis in progress, not completed and finished projects.
How to best care for people with developmental disabilities has been a subject of long-standing debate. Many different fears have driven the sentiments of society (people) urging separation of special groups from society at large. The general public has supported isolating people with disabilities because of the difficulty in meeting their special needs. Institutionalization appeared advantageous for individuals with developmental disabilities because of (apparent) similarity in their level of functioning. Institutions were designed to accommodate the disability: medical care, social activities, educational training, vocational opportunities and job training were designed to be commensurate to the levels of ability of the residents. Implicit in discussions of placing people into institutions is the belief or observation that the general society is somehow harmful to these individuals. Within the more protected environment a vulnerable individual should be able to experience a better quality of life, less stress and greater happiness. Lerman (1981) defined an institutions as ...a private or public civilian establishment which furnishes (in single or multiple facilities) food and shelter to about four or more persons unrelated to the proprietor and, in addition, provides one or more of the following:
l.Medical and/or personal and/or social care
2.Treatment and/or skills training and/or habilitation
3.Supervision and/or custodial control
4.Temporary hold and/or temporary placement
5.Diagnostic assessment and/or background investigation.
This definition presents an inclusive and optimistic view of institutions for providing for the needs of its residents. However, advocates for people with developmental disabilities have had a very differing view of the humanistic aspects of institutional living. To them, the creation of a common culture for people with common problems does not outweigh the depersonalization that impacts on the residents of an institution. The opponents of institutionalization considered this type of setting as nothing more than warehousing people with developmental disabilities to remove the responsibility for addressing the needs of this group from the general public.
In recent history, humanistic sentiments have influenced several states to adopt policies promoting the rights of people with developmental disabilities. These rights included environments that were humane, clean and the least restrictive and rights to communication, personal property and visits. As persons with developmental disabilities were considered with humanistic values, their worth to society had to be reconceptualized. Normalization was described by Nirje (1970) ...as a method of providing common and typical experiences to handicapped people that are available to members of the society at large. The physically and mentally challenged person with limited abilities may never achieve a level of functioning equal to those with normal abilities. However, exposure to common, every-day occurrences creates the possibility and opportunity for people with abnormalities to behave normally.
Individualization was another concept that resulted from the perception that institutionalization depersonalized its residents. It championed the idea that each individual has a unique range of human potential and any service intervention must be tailored to that persons unique needs. As a society, we have an obligation to maximize human potential through the application of resources fitted to each persons strengths and weaknesses (Bradley, l978).
It was values like individualization, normalization, human rights, civil rights and rights to a less restrictive environment that formed the deinstitutionalization movement. This movement created the need to establish policies in order to affirm these social principles and transform them into concrete practice.
Deinstitutionalization is a term that refers to the shift away from large, custodial facilities. It also implies the development of adequate and appropriate community based residential and support services for people with developmental disabilities. This development is driven by the principles that assert that persons with developmental disabilities should be served in programs and residences that are as normal as possible. Where this is accomplished, it is presumed that problems of stigma and isolation will be minimized. (Wolfensberger, l972)
Experts have suggested that deinstitutionalization must include two very distinct components: a) transfer of persons from the institutional environment(s) to the community; and b) prevention of hospitalization of those persons who might be considered candidates for institutionalization. Any responsible public policy of deinstitutionalization must take into account both of these components and that the failure to do so would result in a hopelessly fragmented and unresponsive service delivery system (Bachrach, l983).
During the past two decades, analysts of public policies have become increasingly concerned with the general problem of implementing desired policies. Many policies fail because they are not carried out or are carried out inefficiently or ineffectively (Mead, l977). Despite the major success of states in striving to achieve the almost universally held goals of deinstitutionalization and the accompanying development of a community-based service delivery system, a crisis threatens that movement to insure that all individuals with mental retardation and other developmental disabilities live in the community. (Hayden and DePaepe, l994) Demands and expectations have risen faster than funding. The slack in the system that was used to cope with unanticipated problems is gone. Many communities have few vacancies and no plans to expand. For those waiting, the practice of offering no support and only serving the truly desperate is maintaining a backlog of people in crisis (Smull, l989). Recent studies continue to support Smulls assertions that waiting lists are still growing and the demand for community services continues to grow.
The decrees and opinions listed above reflect policies that were emergent/expedient rather than policies that were rationalistic, deliberative and purposeful. Neither national nor state legislation has set forth coherent programs for deinstitutionalization. For example, in l962 changes in Federal legislation allowed persons on conditional release from state institutions to be placed on welfare as permanently and totally disabled persons. An expedient, pragmatic approach toward reducing reliance on state institutions resulted in states seeking alternative living arrangements wherever these could be found (Lerman, l98l). People often found housing in settings that were losing other sources of funding. Regulating and licensing these new alternatives did not emerge until after these facilities began to be used in large numbers.
Deinstitutionalization cannot be found in a single, landmark piece of legislation or even in a designated package of laws or regulations. Instead, the actual operating policies have emerged over time and are embedded in laws and regulations governing Medicare, Medicaid, supplementary security income, social service funding, state building-construction codes, licensing laws, vocational rehabilitation, child welfare titles and regulations, and a variety of other comparable sources. A multitude of court decisions at Federal and state levels have provided additional sources of ad hoc emergent policies (Lerman, l98l).
In search for a national policy with respect to deinstitutionalization, the General Accounting Office developed a report entitled, Returning the Mentally Disabled to the Community (l977). While the report offered many useful insights, it had significant limitations. The GAO assumed that there was clarity on what national policy ought to be with respect to deinstitutionalization, when, in fact, no such clarity existed. They included a requirement to upgrade traditional institutions within their definition of deinstitutionalization, thereby muddying the conceptual and policy issues still further. And their report was notable for its failure to examine key titles of the Social Security Act as a means of identifying how the Federal Government might more effectively promote deinstitutionalization in the states (Lerman, l981). Given these disparate resources of policies and the absence of a central lead agency within the Federal Government, it is not surprising that there is a clear lack of consistency in policy at the national level. Although services for people with developmental disabilities is a state responsibility, federal programs have played a crucial role, especially in programs that accommodated deinstitutionalization.
TRANSITION IN NEW MEXICO
Over a period of six years a complete transition was made from large state-run institutional care to entirely community based care. Provoked by a lawsuit brought on behalf of residents of the institution, the initial claims to improve the quality of care at the the institution were interpreted over time to necessitate a move to community-integrated care and living situations. Complex interactions between the legal system and the medical system were administered by a state bureaucracy. This interplay resulted in misunderstandings and misplaced expectations. By the time a legal decision was reached in December 1990 regarding the rights of residents at LCPDD, the rift between plaintiffs and defendants was too great to mend.
The state of New Mexico had two institutions for the care of persons with mental retardation. The first was Los Lunas Center for Persons with Developmental Disability (LLCPDD) its last official name. Opened on April 5, 1929 it housed a maximum of 513 full-time residents at any one time. It closed by the end of July, 1997. The second was Fort Stanton, open to residents from June 1966 until April 1995. There were a maximum of 220 residents at any one time at Fort Stanton. This institution has had several functions since starting as a Civil War fort. The intent of institutional care was to provide a safe, secure, stimulating and appropriate environment for people with severe developmental disabilities, including their medical problems. Parents or guardians were encouraged to take a continuing interest in their child, but not expected to carry either the brunt of decision making nor the brunt of personal contact with the patients who were institutionalized. It was often a wrenching relinquishment of parental care.
Serious questions about the quality of care provided to residents at both institutions prompted a class-action lawsuit. As these questions were discussed, both in the courtroom and at the institution, a number of different aspects of the challenges in providing care for persons with developmental disabilities were highlighted. There had been little comprehensive review of each individuals care. A number of different disciplines assessed the strengths and weaknesses of the individual patient, provided plans of care, delineated outcomes expected, revised their expectations and monitored the patients relative progress. The result of these separated approaches to care was overall inferior quality of care and greater health risks to the individuals being treated. Examples included undertreated seizure disorder, infectious diseases and functional underachievement. The results of this (institutional) approach have been little disputed. The intent of health care providers, of the institutions and of the state bureaucracy has been sharply questioned. Therefore, the mechanisms to redress the errors have been varied and passionately disputed.
One of the first steps in correcting perceived errors was to closely monitor professionals contact with patients. This monitoring included requiring paper documentation for all decisions, and reviews of their outcomes. This resulted in medical personnel perceiving themselves to be devalued, not respected and deemed incompetent. The training of health practitioners has had relatively little focus in developmental disabilities in fact, most of todays experts have learned on their own. The increased observation and criticism was very unsettling. It also increased their perceived time spent in filling paperwork, rather than in clinical contact or interdisciplinary interaction. Attitudes became less energetic and motivated. Increase in staff turnover was also prompted by the number of outside consultants who came in to provide independent assessments of the services. The intentions of the consultants was to identify weaknesses and to raise standards of care. Oftentimes this was not done in a manner that elicited buy-in from the personnel on site. The wrenching attitude induced by legal processes creates adversaries, rather than teammates. The people most at risk because of this process were the individual patients housed at the institutions.
Many people, many guardians, believe(d) that by bringing patients to live in the community, they could access the high(er) standard of care experienced by the rest of us. In the present era of managed health care systems many of us are questioning the accuraccy of this perception. For persons with developmental disabilities, increased access to care that is not attuned to their abilities and needs may not prove of benefit. To live in the community is thought to improve the quality of life for people with developmental disabilities. This would be reflected in more normal social behaviors, increased independence in daily living skills, increased comfort with self-expression, possiblitities for employment and access to necessary support services. There is an assumption that persons with developmental disabilities could not and would not receive open-ended enough opportunities as long as they remained in the institutions.
As the discussion about the most appropriate care continued it became clear that each person spoke with the sense that he/she was advocating for the best interests of the patient. The dilemma of who truly represents the person with developmental disability is a complex issue that often unnecessarily divides individuals involved in the persons care. Sometimes a person with developmental disability can assess their own situation and form competent opinions about their goals in life and their needs for support to achieve them. More often, various other opinions must be sought and relied upon. As the discussion about the best interests of specific individuals continues, the complex dimensions that contribute to a meaningful life are brought into relief and demonstrate the need to integrate all aspects of the individuals interests, abilities, strengths and weaknesses, desires and dislikes.
Since 1992, 480 individuals have moved from our institutions to community-based housing. Some have returned to live with members of their family of origin. More often, they have moved to shared apartments or group homes with varying levels of day and night support staff. We have identified a subgroup of patients from those who participated in the class action lawsuit. They all have either neurologic or psychiatric illness in addition to mental retardation. We have reviewed their institutional care records and their community individualized service plans (ISP). We have followed specific case examples of people with dual diagnosis who have benefitted from the move into the community and those who experienced a setback. Each individual has an identified primary care physician whom they access for well care and urgent medical evaluations. These primary physicians are responsible for referrals to specialists and are expected to work with identified specialists such as neurologist and psychiatrists. However, several psychiatrists have not been liked by individual patients and/or have not been willing to accept more than a few patients into their practices.
Costs of care for people with developmental disabilities can be measured in several ways. Direct, billable costs of running an institution or providing multi-faceted care from a variety of sources can be recorded and compared. We analyzed the individual service plan budgets for a sample of seventy-six individuals who had moved to the community as of October 1996. The overall cost of care was $136,000/year in LLCPDD and $86,342/year in the community. The New Mexico Department of Health projections for the current fiscal year (July 1, 1997 to June 30, 1998) estimate that class members will cost $69,270 on average. While this seems to indicate that costs are coming down as people adjust to the community, the figures are not entirely comparable. Our 1996 analysis was conducted on a sample of individuals all of whom had a psychiatric diagnosis and/or a seizure disorder whereas current Department of Health projections are based on all members of the class-action lawsuit.
Less easily quantified, are the opportunities for meaningful, trusting relationships to develop. With any major transition these relationships will be changed, sometimes disrupted. The impact of the disruption on the individuals ability to function is difficult to measure in an objective way. Lastly, the quality of life is a dimension which is described by various associated experiences. Improved quality of life is a goal and benefit of community-based living experience in many circumstances. The social reality for a person with developmental disability, especially those with dual diagnosis, cannot be prescribed in generic form by social policy.
In an effort to measure the experiences of individuals who have moved into the community, the Department of Health has undertaken an annual community audit for the past four years. This audit is now referred to as the System Quality Review. There is data of a random sample of 35 individuals audited in the Metro Region during the spring of 1997. In this sample group 60% (21) were deemed better off as measured by improved skills, decreased behavior problems and/or increased choice; 29% (10) were deemed to be about the same as they were while institutionalized and 11% (4) were doing worse. Of the four individuals who were doing worse overall, two have developed significant medical problems which are independent of the change in living situation. Another resulted from poor support by and poor communication within the community team. So little information was available regarding the last individual that it makes one wonder if this apparent outcome is not just a reflection of no data. This independent sample is consistent with other studies across the country that find that the majority of people do as well or better in community placements as in institutions.
IMPLICATIONS FOR NEW MEXICO/FUTURE DIRECTIONS
In July, 1996 Secretary of Health, Alex Valdez, announced the future closure of the last New Mexico public facility dedicated to people with mental retardation. The reasons given were predominantly financial. As of the third week of July 1997 all individuals were living in community placements. By numerical and pragmatic standards, this process was fast and effective; 450+ individuals had been placed in the community in a period of less than 5 years. No longer is there an option in New Mexico, for an individual with severe mental retardation to be admitted to a large long term facility for persons with mental retardation.
On the other hand, some parent groups and other individuals fear that the safety net, a safe haven and the center of excellence has been lost. How will the state of New Mexico, under a new environment, deal with these fears and sense of loss?
The safety net. For many decades institutions represented the last recourse to families and health systems that did not find the necessary supports within their natural environment. Families and governmental entities were able to place individuals with severe and profound disabilities at the institution when no foster home or rehabilitation unit had available placement. Once at the institution, care responsibilities were transferred to the government agency. Families were no longer primarily responsible; the care of their loved one was relinquished to the state.
As the state of New Mexico went through the disengagement process from the lawsuit that precipitated the de-institutionalization, a corrective plan was developed to ensure health and safety for all previously intitutionalized persons. At the current time the plan does not have, as an option, a return to institutionalization models, even if/when the community placement encounters extreme adversity. This is an absolute departure from previous history where community placement failures could fall back on the institution.
The Department of Health set in place the preliminary steps to address community resources to ensure successful placements. A multi layer initiative was launched in the areas of behavioral support services by region, traveling support teams, a roster (although limited) of expert consultants, an incident report system, case management plans, assistive technology, employment and recreational services, a quality assurance team and medical service plans. The plan clearly implies the need to develop a community based safety infrastructure completely separated from the (former) institutions.
The safe haven. The sense that a safer environment was needed to protect individuals with mental retardation was without a doubt a big part of the institutional model. (Institutions for the feeble minded). Walls and fences offered some type of protection from the outside world and perceived predators. What is also a common criticism is that those walls also insulated the outside world who preferred to keep these individuals out of sight. Fears related to their reproduction potential (eugenics theory) played an important role in justifying their residence at these facilities. Fortunately, the resurgence of rights for individuals with disabilities has been able to some extent, to recognize the personhood behind the disability and permit their reintegration to society and their natural communities.
With respect to ensuring their safety, there is probably little doubt that from a management perspective it is easier to monitor security in a closed campus than it is to ensure safety for all individuals dispersed in homes throughout the state. The challenge for the state has been to develop and implement periodic safety surveillance initiatives and monitor homes and programs in a manner than ensures minimal safety standards without intruding in their newly established privacy. At present we do not know the efficacy or accuracy of these initiatives.
Although acknowledged, it is frequently debated that part of the benefit of community integration carries some of the risks the rest of the community members have to endure. That is, a greater exposure to common risks and of undesirable societal maladies. Advocates of deinstitutionalization refer to these risks as acceptable and expected in exchange for greater ability to exercise individual rights. Groups that resist deinstitutionalization argue that individuals with profound mental retardation do not have the capacity to exercize choice in a manner that makes a difference when they are living in the community (Stancliffe & Abery, 1997) and therefore they are unnecessarily exposed to these risks.
Recent publications (Strauss et al, 1996 a,b) from California have reported higher mortality rates in the community than at the institutions. On the other hand two longitudinal studies in New Mexico (NM Developmental Disabilities Planning Council, 1996 and State of NM Dept. Of Health Dual Diagnosis Division 1996 Community Audit) reveal greater sense of satisfaction and better quality of life in individuals who have been transferred to the community.
The Center of Excellence. When institutions were conceived a new effort to attract and hire health professionals and scientists with interest in the field was initiated. Much experience and knowledge has been gathered about origins of mental retardation, associated pathology, behaviors commonly observed in this population, aspects of nutrition, seizure management, brain development and its arrest, language and communication, among other topics. Important scientific knowledge has come out of these institutions while the medical community at large has not been educated about developmental disabilities and associated morbidities. However, technological medical advances began to have a greater impact in the survival rates of conditions previously considered incompatible with life. Concomitantly with these scientific breakthroughs, the civil rights movement imposed higher expectations for the care of people with disabilities as supported by Public Law 94-142, PL 99-457 and most recently the Individual with Disabilities Education Act (IDEA). Because of these changes the medical community began to see increasing numbers of people with disabilities at their clinics. This forced exposure raised concerns about the medical communitys lack of expertise and high level of discomfort with this population and prompted development of multiple different training and service models.
New Mexico was one of the first states to develop a Medically Fragile Childrens Program. This program allowed families to keep their children at home with the necessary supports. For the last 10 years in NM no child under 10 years old was admitted to either facility because they were able to stay home. However, children with disabilities are growing older and other medical providers for adults are being challenged to offer medical care to them.
How do we measure success, and what does it mean? Recent literature on this topic appears to have focused primarily on quality of life outcomes (Dykstra, 1995). No doubt that meaningful interpretation of these reports is value- and culturally-based and therefore should not lead to vague generalizations.
State and private communities should strive to develop alternative living models that best correspond to the life values and culture of each individual. At the same time, state policies should assure minimum standards in care, safety and quality of services. For the time being, the prevalent philosophical and financial perspective supports individuals living in the community in small group home settings in a family style living situation. It is likely that new approaches, values and economic factors will drive change in the future. However, we must learn from our collective history to absolutely refuse to go back to previous ways where individuals were not given respect, their dignity was not a priority and assumptions were made on their behalf with disregard of their individual input. We need to protect individuals with disabilities from a social structure that did not value their contributions and wrote them off.
It will be necessary to write policy and develop the surveillance mechanisms to monitor health and safety and personal satisfaction for individuals with disabilities in their new living environment. State officials, academic centers and private community providers need to share the responsibility to follow through with litigation agreements and to pave the steps to ensure that there will be guidelines for future professionals and agencies. State government should provide guidelines and oversee safety concerns for its citizens. Academic centers have a responsibility to train health professionals, both with the intent of attracting trainees to New Mexico and of disseminating competently trained individuals wherever they practice. Health professionals (providers) must view themselves as indispensable resources for the developmentally disabled population and take on the responsibility of keeping their knowledge current in their disciplines.
At the University of New Mexico Health Science Center various programs are addressing the need to train future physicians with competencies in this field. Some of the projects offer multi-disciplinary approaches in otherwise traditional clinical settings; others offer transdisciplinary approaches that emphasize the learning process across disciplines. There are outreach traveling teams that provide direct service and consultation to rural communities. At a department level new divisions have been created to house projects dedicated to developmental disabilities. The University Affiliated Program offers training and service mostly in early identification of children at risk for developmental disabilities. The College of Education also has several programs that provide training to providers and is collaborating in the development of credentialing and competency based certification for providers. Changes in the medical school curriculum have been implemented to expose students to developmental disabilities issues. One particular component was developed in collaboration with a parent organization (Parents Reaching Out) that coordinates visits by students to homes of children and adults with disabilities. Several million dollar grants from the department of health have been directed to support these programs and ideas. The shift is clear. Energy, effort and dollars are being directed towards developing community resources and infrastructure to increase the competency of health providers and the community in general to assist with this process of reintegration.
Deinstitutionalization is a period of transition for everyone. For some patients the transition causes temporary worsening of their behavior, including increased seizures or exacerbation of psychiatric illness. When the effort is made to understand the meaning (and/or cause) of the change in behavior, it does not persist. The process seemed to take from a few months to three years. Outcome assessment will be different depending on the abilities and rate of adjustment by the individual and the team. It is clear from our personal experience and consultation to problem hot spots that a team which is not communicating effectively among its members will be evidenced by behavioral and medical difficulties in the identified patient. Some individuals have had poorer outcomes due to aging and progression of medical illnesses. We cannot show an effect on these processes due to community care level, partly because of small numbers of individuals.
We are aware that certain freedoms have been gained by moving into community settings with more attention being paid to individual preferences. Health habits that are hard to monitor and to influence include weight (obesity), diet, nicotine, caffeine, dental, bowel. These are all personal habits, influenced by health care recommendations and learned patterns and attitudes from our families of origin. It is remarkable that patients can be directed to maintain very strict diets while accompanied by obese, unenergetic staff. This kind of discrepancy naturally enrages the individual who perceives the inequities in standards for behavior. It is also true that certain indulgences, such as eating as much as one wants, are considered treats or the ultimate expression of individual freedom. How and when do we collectively determine an acceptable compromise that does not endanger the health of individuals, for whom the intangible future is not a compelling concept? It is in grappling with these kinds of personal issues and preferences that we think the person with developmental disability is underserved by untrained and psychologically unsophisticated staff.
The approach and intent of staff (from direct care providers, to treatment guardians, to various specialists) have not necessarily changed with the change in location of service delivery. In other words, placing people in the community does not automatically direct the attention of support staff toward the individuals assets and needs. It is understandable that family members participating in the claim against the institution voiced very different expectations (and hence, criticisms) than family members who feared for the welfare of their relatives should they leave the protective environment of the institution. The purpose of the institution and the motivation of the health professionals who worked there had very different meaning to these two groups. The value of normalizing disabled persons to the mainstream community is not shared by all. Even as persons with developmental disability are moving into communities there is a lack of preparedness and psychological acceptance in many communities. Is is imperative that all people working with the developmentally disabled population attend closely to the subtle means of discrimination that can survive, even in the setting of adequate access.
We conclude that it is imperative to encourage each other to listen with care to the expressions of preferences from each person with developmental disability, to adapt the resources available to their benefit, to contribute our collective experiences, successful and deleterious, to anticipating consequences of choices made with each individual.
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For further information contact:
Alison Reeve, M.D.
Continuum of Care
1127 University Blvd., NE
Albuquerque, NM 87102