Sincerely,

Kay Flamineo
Executive Director

NAMI North Carolina Comments on Service Definitions Draft

NAMI North Carolina is grateful for this opportunity to provide comments on the current draft of Service Standards/Service Definitions document, dated June 12, 2003. We applaud the Division efforts to incorporate Best Practice Standards into the planning for services for those with severe and persistent mental illnesses. We are also encouraged by the breadth of community-based services as defined in this draft. NAMI North Carolina strongly supports the broadening of the range of community-based services for children. The inclusion of person-centered planning in the definition of service standards for children is welcome, as it is for other groups of individuals with brain disorders. Likewise, we applaud the strengthening of crisis services and community support teams, particularly since these are billable activities and therefore more likely to be made available to those who need them.

We recognize that there are significant challenges associated with the delivery of services in a new way, and with more stringent standards and accountability for performance. These challenges are serious but not insurmountable. We are pleased to see the staff training requirements included but remain concerned about whether there is a sufficient number of providers to implement the plan, and whether they are adequately trained to provide best practice service. We recognize that with these more stringent standards it may be difficult for providers to maintain a workforce of adequate size and skill. We would encourage maintaining these high standards, perhaps with some interim provisional requirements as the full complement of needed staff is built. We are also interested in learning more about plans to ensure uniformity across all LMEs in the interpretation of standards for choosing provider organizations, with standards set by the Division and the choice made by the LME.

his document also needs to broaden its focus and embrace the concept of early intervention to maximize the possibility of recovery. With newer antipsychotic medications combined with rehabilitative services, the future can be brighter for newly diagnosed individuals. As we develop a new long-range reform plan, we need to be cognizant of emerging and future needs in addition to the provision of appropriate services to those of long-standing illness.

In response to the current draft of Service Standards/Service Definitions, NAMI North Carolina presents the following points for your consideration:

1. Adequacy of Funding: NAMI North Carolina, like many other groups, has grave concerns about adequacy of funding to implement the plan. The expectation that greatly enhanced community-based services will be made available without adequate funding seems unrealistic. It would seem prudent to proceed with the plan, but at a pace that reflects the availability of fiscal support needed to ensure success.
   
2. Non-Medicaid Clients: Another major concern regarding funding is that of support for services for those persons with brain disorders who are not Medicaid eligible. This has long been recognized as difficult, but those without Medicaid eligibility will appear perhaps in Emergency Rooms and some kind of service will be provided. It would seem wiser to begin to plan now, rather than deny service or figure it out after the fact.
   
3. Monitoring for Quality: Assuming that a comprehensive plan for evaluation of program quality is being implemented, it would be helpful to have more information about the monitoring process. Given the expectation that effectiveness of interventions must be documented, where and by whom will evidence of effectiveness be recorded? Does this process involve family members? Does this process allow for participation of recipients of services in assessment of quality of services?
   
4. Clarification of Roles: Much confusion exists regarding the respective roles of Case Manager and Care Manager. It is unclear whether the monitoring functions reside with LME or with providers. There is potential conflict of interest if "the provider assumes the roles of advocate, broker, coordinator, and monitoring of the service delivery system . . . (p.1, second paragraph)". It would seem important to specify which functions are performed by the provider and which ones remain with the LME. If accountability is indeed going to be integral to the successful implementation of the plan, a system of checks and balances must be built into the plan, including how services are monitored with diligence and integrity.
   
5. Recovery: It appears that there is a disconnect between early paragraphs of this draft describing "rehabilitation services . . . recovery goals . . . vocational, residential . . . needs of the recipient" and sections describing more specifics, such as entrance and discharge criteria. For example, entrance criteria seem to reflect an illness model rather than the concept of recovery. Similarly, for expected outcomes, there is no mention of rehabilitation, recovery, vocational and residential services, etc. Likewise, the discussion of crisis management mentions prevention and intervention; however, documentation requirements include intervention only.
   
6. Definition of Outcomes: We continue to hope that service outcomes will be defined in more specific terms so that all LMEs will have the benefit of clear guidance from the Division. An overriding concern is that failure to define outcomes specifically could result in many different and potentially opposing interpretations, possibly becoming very problematic as the plan moves forward. Consistency in interpretation of expected outcomes will be key to accountability and integrity of programming.
   
7. Discharge Criteria: Caution must be exercised as related to discharge criteria. In part, this must be looked at within the context of the person-centered-plan as the plan is being developed. If the plan is well drawn, then the appropriate criteria for discharge are in place. However, as written, discharge can occur when the individual "no longer benefits . . . " In this instance it becomes extremely important that a continuing care plan is established, so that those whose recovery does not go smoothly do not fall through the cracks.
   
8. ACTT: This is a treatment regimen with well documented evidence-based data. It is important that ACTT in North Carolina be delivered in a way that is true to the model. Because candidates for this program are among the most severely ill, the minimum of eight face-to-face contacts a month raises questions about the intensity/frequency of the contacts. If a consumer appears to need ACTT services, it raises the question of the adequacy of twice-a-week contact. One of the discharge criteria is doing well over a three-month period, with eight face-to-face contacts a month. By that standard, a person could be discharged almost immediately upon acceptance.
   
9. Service Provider Organization: The document states that community support may be provided by only one organization. This presumes that one organization will have the complete array of services and trained personnel to provide all the necessary care for any given individual. The referral will be made by the LME, and how the concept of choice or indeed how this service provider organization is significantly different from an area program needs to be explored in greater detail. For example, for the individual who needs two or three services, Provider Organization A may have excellent programs in two out of the three. Provider Organization B may have great strength in the third area. It appears by the one organization rule that the consumer does not have a choice.
   
10. Staffing Requirements: Though the community support services include rehabilitation services to meet the "vocational, residential" needs, the staffing requirements do not include staff with experience in these areas. Since these components are essential elements in a recovery model, some further consideration appears warranted.
    
11. Hospital Downsizing: Though downsizing hospitals so that people can live and receive their care in the community is a goal we all support, difficulties remain. Community hospitals, for the most part, are not receptive to admitting increased numbers of persons with severe and persistent mental illnesses. Some individuals sometimes just need a hospital bed and the number available is shrinking. Because community services have also shrunk in some parts of the state, necessary treatment is inadequate in some parts of the state. In the downsizing effort, people are being trans-institutionalized, from state institutions to mini-institutions or adult care homes with limited rehabilitative opportunities, or even homeless shelters. Until adequate services are available in the community and until community beds can be identified, the pace of downsizing should be slowed.

Again, NAMI North Carolina is most appreciative of the opportunity to provide input into the development of this document. We admire the hard work of many groups and individuals in the Division on the design and implementation of plans for major mental health reform in our state. Our organization, our consumers and our family members stand ready to participate in increasingly meaningful ways as the plan moves forward.

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