Implementing The New PAIMI Act Authority: Where Do We
Go From Here?
Prepared by ATTAC and the Center for Public Representation Under Contract with NAPAS - May 2001
I. Introduction and General Recommendations
On December 21, 2000, President Clinton signed into law the Fiscal Year 2001 Labor, Health and Human Services, and Education Appropriations bill (H.R.4577), which provides for record increases for the PAIMI Program. The total PAIMI Program appropriation for FY 2001 is $30 million – a twenty percent increase over last year’s appropriation of $25 million. Because the appropriation has reached the $30 million level, P&As’ new authority (under the recent amendments to the PAIMI Act) to serve persons living in the community is now in effect.
Although this appropriations increase is quite significant, it triggers major new responsibilities under the PAIMI Act. The client base for the PAIMI Program is very significantly expanded – to include individuals with a significant mental illness or emotional impairment who live in the community, including their own homes. However, the amendments to the PAIMI Act require that P&As give priority to serving individuals residing in residential care and treatment facilities. In addition, when increasing the level of appropriations for the PAIMI Act, Congress expressed a concern that these new resources be targeting to address improper use of restraint and seclusion in facilities. We discuss below these statutory changes, including their policy and management implications.
As discussed below, we have three primary recommendations:
1. Pending guidance from the Federal Administering agencies, it is advisable for P&As to allocate to the PAIMI Program – rather than to the PAIR Program – all of their services to persons with a disabling mental illness or emotional impairment who live in the community.
2. P&As should focus on using systemic advocacy approaches to address community-based issues for people with mental illness, but should continue to pursue individual cases to the extent possible.
3. P&As should devote considerable resources to address restraint and seclusion in institutional settings.
Attached to this paper is a summary of a discussion by a large number of P&A Executive Directors regarding the new authority and resources under the PAIMI Act, which took place at the CEO meeting in March 2001. That discussion supplements the analysis provided below, and should be carefully considered by P&As in weighing management and advocacy options, including the above recommendations.
II. Amendments to the PAIMI Act and New Appropriations
Prior to the amendment, P&A services under the PAIMI Act were authorized only for persons with a “significant mental illness or emotional impairment,” as determined by a mental health professional, who either: (i) reside in a “facility” rendering care or treatment, (ii) are in the process of admission to such a facility, (iii) recently have been discharged from such facility, or (iv) are involuntarily confined in a municipal detention facility for reasons other than serving a sentence resulting from conviction for a criminal offense.
As amended by the Children’s Health Act of 2000 (Public Law 106-310, October 17, 2000), coverage under the Act is expanded to allow P&A services for a person with a significant mental illness or emotional impairment who “lives in a community setting, including their own home.” Technically speaking, the Act was amended to include such persons within the definition of covered “individuals with mental illness.” However, the amendment further provides that this part of definition shall apply, and thus, persons living in the community shall be eligible for services under the PAIMI Program, only when the total allotment under the Act for any fiscal year is $30 million or more. Finally, the Act provides that in such a case, the P&A “must give priority to representing persons with mental illness” who reside in a facility rendering care or treatment.
There apparently is only limited guidance on the application of the new provisions. The bulk of this guidance is contained in the Senate report on the original bill in which the amendments were first introduced, Senate Report 196, 106th Cong. 1st Session 25-26 (1999). The amending language was incorporated into a different bill (the Children’s Health Act), which was ultimately signed into law with the identical amending provisions retained. Accordingly, the Senate report provides useful guidance on the interpretation of the amendment.
In particular, the Senate report provides clarification on two key issues relating to P&A authority: First, the report affirms that P&A services for persons living in the community need not be limited to issues concerning abuse and neglect; the report states that P&A services may address “discrimination in housing, health care, employment or benefits” as well as “abuse or neglect.” (This is consistent with the application of the Act to institutional settings.) Second, the report states Congress’ intent that, in serving those residing in the community, P&As “shall have no less authority to access records to investigate abuse and neglect than is provided” under the DD Act, and “shall have no less authority to gain access to community settings, such as group homes, to conduct investigations and monitoring activities.” The relevant language from the committee report is quoted in full below.
At page 25, the report states:
When the appropriation for the program reaches $30,000,000, this section also expands the authority of the [P&A] systems to include protecting and advocating on behalf of the rights of individuals with a serious mental illness or emotional impairment who are living in communities and who may be subject to abuse or neglect or discrimination in housing, health care, employment or benefits.
And continuing on page 26, the report provides that:
The P&A systems would still give priority to those individuals residing in facilities that provide mental health services but would also be able to work on behalf of persons living at home. Over the past twenty years tremendous advances in treatment services for mental illness have allowed persons with mental illness to receive needed treatment in the community. Unfortunately, there has not been a mechanism to ensure that they are receiving the care and advocacy services they need. This amendment to the current statute would allow the current P&A systems to work on their behalf as well. The Committee hastens to add, however, that the top priority of the P&A systems remains the protection of and the advocacy for the rights of individuals with serious mental illness residing in facilities that provide mental health services.
In addition, the Committee intends that P&A systems, under the Protection and Advocacy for Individuals with Mental Illness Act, when the appropriation for the program reaches $30,000,000, shall have no less authority to access records to investigate abuse and neglect than is provided to the systems under the Developmental Disabilities Assistance and Bill of Rights Act. Similarly, P&A systems shall have no less authority to gain access to community settings, such as group homes, to conduct investigations and monitoring activities, when the systems are acting under their expanded authority to provide advocacy services to persons with a serious mental illness or emotional impairment who are living in the community
III. Emerging Management and Policy Questions
Given the expansion of P&A authority under the PAIMI Program to serve persons with mental illness living in the community, the network is confronted with new strategic and policy questions. In particular, P&As will need to review their eligibility determination process under the PAIMI Program. Also, P&As should review their priority setting processes under the PAIMI and PAIR Programs alike. And, now that a new population of individuals with mental illness is eligible for services under PAIMI and, correspondingly, is no longer eligible for services under PAIR, P&As will need to revisit their decisions on populations targeted and on advocacy and case strategies under both programs. (The PAIR Program, of course, authorizes funding for services to persons with a disability who are not eligible for services under either the PAIMI and DD Programs.) Given the limitation on resources and the expansion of individuals eligible under the PAIMI Program, it will be important to emphasize, where appropriate, the use of systemic approaches to advocacy. Moreover, P&As should also honor the desire of congressional appropriators to devote considerable resources toward investigating and remedying improper restraint and seclusion. This includes actively investigating, where appropriate, reports provided to them, under HCFA regulations, concerning restraint- related deaths and injuries. These issues are discussed below as they relate to the PAIMI Program.
A. Determining Eligibility
Prior to the amendments, the eligibility determination for persons with a mental illness or emotional impairment under the PAIMI Program was straightforward. It could be assumed that, in most cases, such persons who receive care or treatment in a residential facility – by virtue of that treatment setting – have a “significant” illness or impairment, and thus are covered under the PAIMI Act. In contrast, there appears to be no objective criteria that can be readily applied in determining whether persons with a mental illness or emotional impairment who live in the community should be deemed to have a “significant” illness or impairment.
One approach that P&As might choose to apply is to simply serve under the PAIMI Program (rather than the PAIR Program) all persons who have a disabling mental illness or emotional impairment. That is (assuming the issues presented by a potential client fall within the agency’s priorities and there are sufficient resources to provide the advocacy services), all such services may be accounted for under the PAIMI Program without making a specific determination about the “significance” of the illness or impairment. Pending guidance on the subject from the Federal Administering agencies, this seems like a reasonable approach (and in fact, is currently in use by a number of P&As).
This approach is especially warranted in light of the administrative difficulties that P&As would encounter if they were required to make a “significance” determination (in the absence of clear official guidance or criteria on which to base the determination). For instance, programs would need to design questions that will allow them to make an informed decision regarding this issue. Second, it might be necessary to obtain objective documentation regarding a person’s diagnosis, and such documentation frequently may not be available. Even if there were documentation available, it is unclear what process should be used to resolve the inevitable questions that would be raised about the credentials and qualifications of mental health professional who made the diagnosis. (Because this is an individualized determination, sometimes made with little objective criteria, the mental health professional’s determinations are very subjective, and there may be much inconsistency among various professionals regarding a particular condition.)
B. Priorities
Priority setting is a critical aspect of effective and meaningful implementation of these new PAIMI responsibilities. As noted above, the amended PAIMI Act itself clarifies that P&As “must give priority to representing” persons with mental illness who reside in facilities. At a minimum, the statutory language suggests that a majority, and probably considerably more, of the resources available under the PAIMI Act should be devoted to facility-based representation.
In addition, great weight must be given to the fact that Congress, in increasing the appropriations under the PAIMI Act, was concerned that P&As use such resources to address the problem of improper restraint and seclusion in facilities. In this regard, the conference report for the bill (H.R. 4577) which increased the appropriations under the PAIMI Act provides in relevant part (at Congressional Record, p. H12138, Dec. 15, 2000):
The conference agreement includes $30,000,000 for protection and advocacy instead of $24,903,000 as proposed by the House and $25,903,000 as proposed by the Senate. The conferees continue to be concerned about deaths and serious injuries due to the inappropriate use of seclusion and restraints in facilities that treat individuals with mental illnesses and have provided additional resources so that these deaths can be investigated and future incidences can be prevented.
The conference report language indicates Congress’ desire that P&As devote considerable resources to issues concerning restraint and seclusion when representing persons in facilities. Although the report language does not impose a mandatory directive on P&As on this issue, it is highly recommended that P&As take this concern to heart and vigorously investigate these issues to ensure both individual and systemic relief.
Further, HCFA has issued two sets of interim final regulations under which reports of restraint-related deaths and other incidents are to be provided to P&As for investigation. These regulations relate to hospitals (42 CFR 482.13(f)), and psychiatric residential treatment facilities (RTFs) for children. The RTF regulations were published at 66 Fed. Reg. 7147, January 22, 2001, and amendments to the regulations were separately published at 66 Fed. Reg. 28110, on May 22, 2001; these regulations will appear at 42 CFR Part 483.
The hospital regulations provide that HCFA’s regional offices will share with P&As reports they receive from hospitals regarding deaths occurring while the patient was is in restraints or seclusion and deaths which reasonably may be concluded to have been related to restraint or seclusion. The hospital regulations went into effect on August 2, 1999, and upwards of 50 reports of restraint-related deaths have been shared with P&As since then. The RTF regulations, which became effective on May 22, 2001, contain a considerably broader reporting requirement. These regulations specify that RTFs themselves shall report directly to P&As all deaths occurring in such facilities (whether or not related to restraint or seclusion), as well as serious injuries and suicide attempts. Both HCFA and CMHS will be issuing restraint and seclusion regulations covering other health care settings in the future.
P&As should carefully document their investigative activities for purposes of completing their annual Program Performance Reports. We can be sure that policymakers will be paying close attention to these P&A activities when determining whether further resources and/or authority are needed in the future. (A variety of resources regarding seclusion and restraint issues, as well as on abuse and neglect generally, are available on the P&A/CAP web site at http://www.protectionandadvocacy.com/private/resscfol.htm and at http://www.protectionandadvocacy.com/private/abusen.htm.)
The allocation of PAIMI resources to community representation should be viewed as gradual and dynamic over time. There are a number of reasons that counsel in favor of an incremental and deliberate implementation process. First, there are existing priorities and commitments that programs need to honor. Second, these new resources have not been made available until well into the fiscal year, when annual priorities have already been established and are presumably being implemented. Third, programs will need to engage in a priority setting process for these new resources that will be time consuming and will properly involve the input of a range of new stakeholders. Fourth, given the history of the P&As' newly mandated programs, resources are likely to expand over time, making it possible to implement a gradual shift to increased community representation. Finally, we should recognize that this new influx of funds under the PAIMI Program, in practical terms, does not represent a significant increase in resources available overall to support services for persons living in the community. This is the case because P&As have long been using a sizable portion of their PAIR Program funds to serve such persons – and the PAIMI funds will now have to serve as a replacement for those resources.
The involvement of the Advisory Council will be critical in a priority setting process for these new resources and clients. It will also be necessary to solicit the input of other stakeholders, interested organizations, and other parties – which will be time-consuming but well-worth the investment. However, it is also necessary for the P&A to provide leadership and guidance and ultimately to generate its own recommendations regarding the distribution of resources and potential substantive activities.
Existing program staff and ongoing systemic commitments need to be assessed and factored into this evaluation. For instance, there may be fewer forums for non-attorney advocates to provide representation in the community, depending on the substantive areas a program decides to address. To the extent that a PAIMI program is heavily staffed by non-attorneys, this will necessarily influence the program's priorities and will have implications for hiring of new staff with the new resources. It is both appropriate and efficient for programs to consider their existing areas of expertise when developing priorities for this new group of eligible clients. Knowledge and expertise in the traditional PAIMI areas of abuse, neglect and discrimination can be easily transferred to the community, along with the principles, strategies, and service delivery models for representing individuals with serious mental illness.
It is critical that P&As forge partnerships with traditional legal services and other advocacy organizations. Many of these groups already provide effective legal representation to this newly eligible client group. There should be every effort to supplement and not supplant the representation that these organizations provide – for at least three important reasons. First, given the limitations on P&A resources, P&As probably will not be able to focus on the poverty law issues traditionally pursued by legal services offices. Second, coordination will avoid duplication and will enhance representation opportunities for this group of PAIMI eligible clients. Finally, the partnerships will avoid the creation of a highly undesirable “segregated” legal services program for generic legal problems for persons living in the community who have serious mental illness.
C. Systemic Activities
Given the number of new potentially PAIMI-eligible clients living in the community, P&As should consider devoting a significant portion of their new resources to systemic law reform activities that would allow these new resources to have a greater impact on this new client group. The following substantive areas, as they relate to persons with mental illness living in the community, are worthy of consideration:
1. The State mental health or Medicaid system's neglect of individuals who are homeless and have serious mental illness;
2. The waiting lists for community services and supports for individuals with serious mental illness;
3. Medicaid/Managed Care as it negatively affects individuals with serious mental health needs;
4. The failure of most States to make PCA services available to individuals with serious mental illness;
5. The EPSDT mandate on behalf of children with severe emotional disturbances who are not getting needed services; and
6. Fair housing, ADA, and § 504 cases challenging systemic discrimination of individuals with serious mental illness.