NJPRA Response to Public Advocate’s Report

March, 2008

NJPRA Position

NJPRA opposes any plan to use State funding to increase the capacity of large congregate care facilities.  In particular, we are opposed to using State funds to increase the capacity of the RHCFs in order to achieve compliance with the U.S. Supreme Court’s Olmstead v. L.C. decision. Residential Health Care Facilities (RHCFs) contributed to the failures of deinstitutionalization in the past.  Moving from state psychiatric hospitals to large congregate care facilities is best described as “transinstitutionalization” (Carling, 1995, p. 33), meaning that people were shifted from one segregated, institutionalized environment to another. 

NJPRA believes that we need to learn from the past and move forward with the transformation of our mental health system to one that is truly focused on wellness and recovery, not revert back to a system that relies on transinstitutionalization to lower the state hospital census. NJPRA recognizes that action must be taken to address   overcrowding, violence and lack of a recovery-oriented treatment focus in our state psychiatric hospitals.  We are very interested in partnering with State officials and other mental health advocacy groups to implement strategies to solve these problems. 

The intent of the Olmstead decision was to promote community integration and uphold the rights of people with disabilities to live in the least restrictive setting possible. Indeed, in some states moving people out of RHCFs or similar facilities has been done to comply with the Olmstead mandate. When provided with the needed level of supportive services, the vast majority of people with psychiatric disabilities are capable of living in regular housing in our communities and assuming valued social roles (Rosenheck, Kasprow. Frisman  & Liu-Mares, 2003; Hulburt, Hough & Wood, 1996;Tsemberis & Eisenberg, 2000)

Basis of NJPRA’s Position

NJPRA’s position is based upon: 1) our review the Public Advocate’s report: “Heading toward Homelessness: Issues in Residential Health Care Facilities”; 2) the experience of our mental health service provider members with RHCFs; 3) the experience mental health service consumer provider members with RHCFs. We concur with the Public Advocate’s report, that residents of these facilities are often subjected to very poor living conditions, stigmatizing attitudes, and discriminatory treatment.  A number of specific concerns and questions are raised by the Public Advocate’s Report:

• According to the Report, more than half of NJ’s RHCFs were given a rating of “poor” in terms of Health and Safety violations.  This is an unacceptable situation and needs to be addressed as soon as possible.

• The report documented that the vast majority of residents (90%), both with and without a psychiatric diagnosis, were prescribed psychotropic medications. It also states that there is a suspected over-utilization of anti-psychotic medications in these facilities.  This is a particularly disturbing considering the many serious chronic health problems that have been associated with long-term use of many of these medications.  Again, action must be taken quickly on this issue.

• As stated in the report, the lack of a requirement to air-condition the RHCFs is a big concern, particularly since many of the residents are elderly and/or have difficulty with body temperature regulation. Antipsychotic medications are a clear factor in this issue for many of these residents.   A few years ago in New York City there were deaths in these types of facilities that resulted form lack of air conditioning during a summer heat wave. We agree with the Public Advocate’s recommendation that regulations be changed to require air conditioning - this should be done quickly in order to prevent a similar tragedy in New Jersey.

• The report states that, "[RHCFs] are a valuable transition tool, however, and a mental health consumer living in an RHCF with the proper supports can gain the skills needed to transition to a supported apartment." (p. 16).  There is no evidence this is true.  The literature on residential treatment and skills training techniques suggests that the opposite is true.  Even if there was a concerted effort going on in the  to teach people independent living skills – which we have not seen evidence of so far – people with psychiatric disabilities have great difficulty transferring skills learned in one setting (e.g. a large RHCF or group home) to another (e.g. a small home or apartment . In addition, most RHCFs do not have the facilities (e.g. training kitchens) staff (trained rehabilitators), or policies (e.g., ability for residents to assume own medication sorting and handling) to make such transition readiness probable.  It is our observation that many people do not transition to less restrictive settings, and instead remain in RHCFs until moving to skilled nursing facilities later in life. We also observe many residents of these facilities make high use of expensive day treatment programs, develop few community linkages, and rarely achieve meaningful vocational goals.  

• NJPRA is particularly concerned about the stigmatizing attitudes and associated discriminatory treatment within some of the RHCFs documented in the report.  Particularly disturbing was the quote on p. 13:           

“In those RHCFs that catered primarily to residents with mental illnesses, the physical plant generally was not as pleasant or as clean. In most cases, it was apparent that this was just an issue of funding. In rare cases, however, operators indicated that they provided a less welcoming environment because people with mental illnesses deserved less. One operator went so far as to tell us that she did not really believe that the residents she was paid to care for were truly ill, but rather that they had a      “laziness disease.” In settings like this, people with mental illnesses are stigmatized even by those who make their own living by housing them.  Although this facility ranked as a good performer by DCA standards, clearly this operator should not be working with vulnerable individuals”

Strategies for Addressing the Issues:

For the existing RHCF’s, we agree with some of  the recommendations outlined in the Public Advocate’s report, particularly the idea of making quality wrap around services available. Our members have also proposed that a number of potential strategies be explored to both address problems in the current RHCF’s and to find alternative ways to increase housing options for individuals being discharged from New Jersey’s State psychiatric hospitals; these are listed below.  We welcome the opportunity to explore these – and other strategies – with mental health consumers, providers, advocates and State officials.

·        Joint monitoring of the current RHCFs by DCA and an independent consumer run entity or protection and advocacy agency.  

·        Specific funding for mobile supportive/rehabilitative services for existing RHCFs.

• Exploring ways to partner with the Board & Care Council to improve services.

·        Increasing use of self-help by residents of existing RHCF’s. Both Self-Help center Boarding Home Outreach  and GROW’s Mobile Support Group concept have been beneficial.  Other models from NAMI and other organizations are available.

·        DMHS monitoring of prescribing practices related to psychotropic medications used by RHCF residents

• Consumer controlled, recovery-oriented congregate care facilities as proposed by Collaborative Support Programs of New Jersey
• Alternative supported housing/Residential Intensive Service Team (RIST) model presented by the Supportive Housing Association.

References:

Carling, PJ (1995). Return to the community: Building support systems for people with psychiatric disabilities. New York: The Guilford Press.

Hulburt MS, Hough RL & Wood PA (1996). Effects of substance abuse on housing stability of homeless mentally Ill persons in supported housing. Psychiatric Services; Jul;47(7):731-6.

Pratt, C., Gill, K., Barrett, N., Roberts M. (2007) Psychiatric Rehabilitation. San Diego, CA: Academic Press.

Ridgeway P & Zipple AM (1990). The paradigm shift in residential services: from the linear continuum to supported housing approaches, Psychosocial Rehabilitation Journal; 13(4). 11

Rosenheck R, Kasprow W, Frisman L & Liu-Mares W. Cost-effectiveness of supported housing for homeless persons with mental illness. Archives of General Psychiatry. Sept:60: 940-51.

Tsemberis S & Eisenberg, RF (2000). Pathways to housing: supported housing for street-dwelling homeless individuals with psychiatric disabilities. Psychiatric Services;Apr; 51:487-493.