Traumatic brain injury: a public policy analysis from a state perspective.

In the early 1980's, traumatic brain injury (TBI) was known as the "silent epidemic," not only because TBI most often is an "invisible" disability, but also because it was one of the lesser known disabilities. Now, thanks to the advocacy and outreach efforts of the National Head Injury Foundation and its Chapters, there is a much greater public awareness of TBI. A number of states that only fairly recently did not officially recognize that TBI resulted in a unique set of disabilities have now established specific initiatives to deal with the problem.

The experience of each state has been different, even though there have been certain common experiences. New York State's experience, as a case excample, provides insights useful for application elsewhere.

The author has directed New York State's efforts in this field since they began in 1984. The policy analysis presented in this report would not have been possible without the funds provided by TBI-NET (via the Rahabilitation Services Administration of the U.S. Department of Education) and a grant from the Milbank Memorial Fund. These funds provided a means by which state officials were able to interact with policymakers in other states and thus benefit from their experiences. In this way, New York was able to develop public policies based upon a diversity of input. The author also was able to work in a collaborative relationship with professionals, people with TBI and their families, and state officials in New Jersey, Connecticut, and Puerto Rico who were part of the service and research network included in TBI-NET.

Despite a decade progress, no state has yet developed a comprehensive system that meets the needs of people with TBI and their families. Some states have made some significant gains in addressing selected aspects of the overall problem, but progress has been sporadic, as it has been dependent on the service delivery philosophy of each state and on individual strategies for dealing with the problem.

The most improvements have been made in gaining access to appropriate impatient rehabilitation services, while the least headway has been made in providing needed community-based services. People with TBI who have access to certain third party funding streams, particularly worker's compensation and no-fault automobile insurance, generally have fared much better. Those states that have the most extensive coverage under no-fault automobile insurance have made the most progress, but the emphasis in such states has been more on medical rehabilitation that it has been on the development of an array of community-based services.

The evolution of services for people with TBI has taken place as part of changes within the broader policy context, such as increased concern about the rising costs of healthcare and the growing shortfalls in public funding for services of all types. A rising consumer movement, particularly its disability rights component, has strongly questioned traditional approaches to service delivery that have developed under the stewardship of professional "experts." As a result, new TBI advocates have challeneged those who preceded them as being too aligned with the "medical model," which has emphasized providing services to "fix the person." The new emphasis in on changing the enviroment to eliminate handicaps and reduce the effects of disabilities.

New York's experience has reflected this changing environment. In 1985, Governor Mario Cuomo asked the New York State Department of Health (DOH) to take the lead in addressing the concerns of TBI advocates, particularly the lack of specialized rehabilitation services that resulted in out-of-state placements of people with TBI. The decision to designate DOH to take the lead reflected, in part, a narrow conceptualization of the problem at that time, which was of healthcare delivery. If the same decision were to be made today, several other agencies may have been chosen to lead the project, as the focus has since shifted and become broader in scope.

The Evolution of Public Policy In New York 1985-86

In 1985, when Governor Cuomo directed the Commissioner of Health to prepare a report on TBI in 60 days, most state officials had no knowledge on TBI and its consequences. The New York State Head Injury Association (NYSHIA), founded in 1980, was still in its formative stages. Moving government to act was always one of NYSHIA's highest priorities; but despite several years of advocacy, even those officials who had began to understand the consequences of TBI by 1985 were unable and unwilling to devote more than token attention to the unmet needs of people who have TBI. The year 1985 seemed to be a turning point for TBI advocates. The governor's directive to the Commissioner of Health was followed by a similar directive from the legislature which resulted in a second report--Head Injury in New York State--completed in 1986. During this period the state also began to provide funding to support NYSHIA activities.

Prior to 1985 state agencies generally did not acknowledge that TBI presented problems not being accommodated by their systems of services. Agencies were then, as now, concerned about responding to the "disease of the month." However, the reports authored by DOH provided legitimacy to the problem as they documented the number of hospital discharges of TBI patients (Figure 1), described the devastating consequences of TBI, outlined the services needed to meet the needs identified, and laid out a comprehensive set of recommendations to prevent TBI and to address its consequences (Figure 2).

No guidance was provided by the legislature, the governor, or the Commissioner of Health on how limited or how sweeping to make the recommendations in these reports. Although DOH subsequently would have responsibility for implementing many of the recommendations, many went beyond its scope, as they related to the educational and vocational rehabilitation systems. In addition, some of the recommendations lacked specificity since it was unclear who would have responsibility for their implementation. As a result of this lack of delegated responsibility and direction, the midlevel bureaucrats representing the various key agencies crafted recommendations that were ambitious, but avoided creating any real pressure or embarassment for any of the agencies particiapting in the deliberations of the ad hoc task force.

Advocates presumed that, once the report was received by the governor and the legislature, its implementation would naturally follow. The logic for action seemed to compelling to those who were closest to the problems of TBI. Participants presumed that requesting a set of recommendations implies a commitment to action, but this is not always true.

1987-88

In the absence of any significant response from the governor or the legislature to the recommendations contained in the second report, DOH staff, with support of the commissioner, moved forward to impelment changes, including needed improvements in the medical rehabilitation system (Figure 3). A highly regulated state in regard to healthcare, New York is in unique position to shape the development of medical rehabilitation services through the use of DOH's regulatory authority. DOH can determine the need for specific specialized services (certificate of need proces), set levels of reimbursement for Medicaid patients (with many linkages to other governmental and nongovernmental payment streams), and oversee the quality of care through its surveillance process.

During the 1980's, medical rehabilitation facilties proliferated throughout the country for a variety of reasons, including changes in the hospital reimbursement methodology (DRG's/case paymen) and opportunities for profits to investors. new York, which has a history of concern that excess capacity inflates total healthcare costs and reduces the quality of care, responded to assure orderly development of necessary programs by capping the growth of rehabilitation services based upon a predetermined need. DOH recognized that people with TBI needed specialized services by making a commitment to approve approximately 350 beds for this purpose. Fewer than 100 such beds were in operation in the late 1980's. DOH presumed that the incentives that had led to growth elsewhere would have similar results in New York. However, incentives were not sufficient to assure that such programs would develop, and that number had not increased by 1992.

A large number of the existing rehabilitation programs (short-term or acute rehabilitation) were not staffed to accommodate the needs of people with TBI and their managers expressed little interest in expanding their services to include people with TBI. Because many people with TBI continued to be exlcuded from these programs, DOH sought to facilitate the development of a secondary level rehabilitation services for those mosty likely to be excluded--people with severe TBI. DOH determined that 661 additional long-term rehabilitation beds were needed across the state. DOH's intent was that these beds would complement the acute rehabilitation beds and that, together, both levels would constitute the initial steps in the creation of a continuum of care for people with TBI.

Unfortunately, because the methods to link these levels were never articulated in the planning and implementation p process, confusion and competition for patients resulted. In retrospect, of one of the effects of defining two levels of service was to greatly overestimate the total need for inpatient rehabilitation beds. Ultimately, only moderate success in filling New York's gap for medical rehabilitation services for people with TBI was achieved, and then only in some regions of the state. Thus, many people with TBI were forced to continue to leave the state for rehabilitation services.

During this same period, DOH also developed operating standards for specialized outpatient programs for people with TBI. Once again, this strategy did not produce an increase in the needed services. Once of the primary seasons for the lack of development in this area was that service providers believed that the reimbursement being offered both by governmental and nongovernmental sources was inadequate or unavailable. In addition, providers recognized that their survival was dependent upon a flow of referrals from inpatient programs. In many regions, this flow did not exist, because impatient programs did not develop as planned and many persons with TBI continued to go out of state. Even in-state inpatient programs often had greater incentives to retain patients than to discharge them to other outpatient providers.

At this time, New York's vocational rehabilitation agency, the Office of Vocational and Educational Services for Individuals with Disabilities (VESID), also took steps to recognize TBI as a distinct disabling condition. In 1986, NYSHIA conducted a survey of the vocational system and developed a comprehensive set of recommendations to the Commissioner of the Office of Vocational Rehabilitation (OVR; subsequently, VESID) (Figure 4). This work was completed under an OVR grant and the recommendations included input from OVR staff. While it is presumed that implementing the recommendations was an agency priority, implementing all the recommendations would have required substantial new resources, beyond those that were available. As a result, some progress has been made in improving services, but testimony by TBI advocates at recent hearings held by VESID demonstrates that most of the 1986 recommendations remain to be implemented.

1989-91

Head Injury in New York State recommended that an interagency council be established to facilitate action in the many domains that required coordination between agencies. In 1989, the Commissioner of Health convened the Head Injury Services Coordinating Council (HISCC). Previously, DOH staff had recommended that HISCC be estabilshed pursuant to a governor's executive order as a means to heighten the visibility of the group and to encourage other agencies to make its work a priority. However, the governor's staff chose to request the Commissioner of Health to invite other key public and private agencies and individuals to serve on this council and its committees without issuing and executive order.

The HISCC, which first met in May 1989, was divided into four committees: case management, community reentry services, pediatric issues, and behavioral issues. Each addressed a neglected component of service delivery. Each of these committees did extensive background research in policy areas warranting interagency collaboration and developed specific recommendations for policy and programmatic changes.

For 2 years HISCC served as an effective advisory body to DOH and provided an effective forum for sharing expertise. The partnership of agency staff, advocates, and professionals was effective in gaining a thorough understanding of the policy and programmatic issues that had not been explored by the previous task forces. HISCC and DOH convened a series of meetings in which officials of other states and other experts from outside of New York were invited to provide technical assistance so that New York might benefit from the experience of other states. Topics included registries and other sources of data, assessment instruments, challenging behaviors, and meeting family needs. By spring 1991, HISCC participants and DOH staff had gained a very sophisticated understanding of how to meet the needs of people with TBI, but everyone involved, including DOH executive staff, were expressing growing frustration with the lack of tangible progress, whereupon TBI project staff began to reevaluate its past efforts and to search for new strategies to produce change.

Concurrently, between fall 1990 and fall 1991, with support from the Milbank Memorial Fund, the author completed and extensive review of the literature and consulted with a number of advocates and experts about family and community supports for people with diverse disabilities, with an emphasis on identifying successful publicly funded programs throughout the country (Figure 5). These programs were then visited so that first-hand knowledge of effective service provision could be articulated. The author and his staff gained an accompanying understanding of how the policy and resources supporting these programs had been developed, thereby they were enabled to assist New York in its own implementation process.

The final phase of the Milbank sponsored project was to analyze New York's political environment and develop strategies for implementing the best practices identified elsewhere in New York.[1]

The resources of TBI-NET enabled DOH to contract with exprienced public policy consultants to assist TBI project staff in developing and strategic plan that would incorporate the lessons learned from the author's recent policy analysis and moved from a mode of continued study to one oif action. The strategic plan has the following mission statement:

"To support individuals with traumatic brain injury and families within the community of their choice and lead the cooperative development of necessary service support capabilities for these persons."

This goal is supported by the following values statement: "People with TBI and their families have a right to be full, participative life in teh community of their choice. They have full legal rights and protection as citizens and the right to make choices about their daily lives, jobs, friends, associations, and homes. They have the right, indeed the obligation, to take responsibility for these matters, including responsibility for any attendant risks such choices may encounter. Programs, services and supports, must be sufficient to help persons with TBI and families restore and maintain their full potential and must be easy to use, organized in a coherent way, and cost effective."

In order to fulfill this mission, a number of objectives and specific actions have been identified.

TBI project staff learned that New York's experience since 1985 could be helpful in gaining the necessary political support to implement programs that could have been put in place several years before, were it not for lack of the necessary policy decisions. The largest factor that would foster new policy development became the growth in New York's Medical expenditures for out-of-state placements of people with TBI, which approached $50 million annually for approximately 510 people (Figure 6). TBI project staff started to link the development of new services in New York to the reduction in expenditures out of state, with a projected substantial net savings. Arguing for enhanced Medicaid reimbursement for specialized rehabilitation services to encourage the development of both inpatient and outpatient programs became easier because the consequences of failing to act had been documented. Since 1985, the economics had shifted in favor of action versus inaction. DOH began to focus attention on the benefits of taking action.

Additionally, actual experience of the programs that have developed since 1985 have enabled decisions to be made based upon real evidence rather than hypotheticl need. Finally, the awareness of TBI had grown sharply since 1985, in part from the adverse publicity associated with large proprietary providers of services to people with TBI--an impetus to develop alternatives.

TBI project staff began to seek and maintain partnerships more aggressively as a method to produce change. While the importance of partnerships seems obvious, partnerships are frequently lacking within government and between government and the private sector. Without a clear mission that is accepted by all key parties, conflict and inaction will predominate. TBI project staff saw the need for concurrent action in two principle arenas: medical rehabilitation and long-term support services to enable people with TBI to live successfully in the community. While it was tempting to concentrate limited resources on one or the other, the author concluded that progress was dependent upon action in both arenas simultaneously. Developing in-state rehabilitation capacity was essential to breaking the cycle out-of-state placements and poor outcomes for many people with TBI.

Medical Rehabilitation--Regional System Development

The Problem: While the need for integrated and coordinated rehabilitation services was recognized in Head Injury in New York State, subsequent implementation activities focused on a series of loosely connected initiatives: to increase short-term (acute) specialty inpatient rehabilitation services; to increase long-term specialty inpatient rehabilitation services; and to increase outpatient specialty rehabilitation capacity. When reviewing recent experience, DOH concluded that without a coordinated approach either excess capacity would develop (with adverse effects, such as overly aggressive marketing and competition) or gaps would continue. In addition, many people with TBI would not be admitted to the most appropriate programs to meet their needs, often lengths of stay would be too long, and many services would be duplicated as people with TBI moved from one setting to another.

The Solution: In the fall of 1992, DOH convened a new technical advisory group to reevaluate the models that DOH had developed in the late 1980's. As a result, the short-term and long-term inpatient rehabilitation models were collapsed into one level of care that could serve a broader group of people. A new concept of a "coma recovery" phase was adopted to accommodate people who are not alert and are traditionally excluded from inpatient rehabilitation. Both levels of service would be offered in the same rehabilitation program. A specialized extended level of care in nursing homes, long under consideration by DOH, is now considered an essential element of a regional rehabilitation system to assure an appropriate discharge option for those people whose recovery is insufficient to allow them to return to live in the community. Finally, a subcommittee of the technical advisory group has developed recommendations on how outpatient rehabilitation services should be structured, staffed, and reimbursed.

DOH committed to a more proactive role to assure that the conceptual model (described in Figure 7) becomes a reality. For example, New York, long a proponent of health planning, has continued to provide financial support to Health Systems Agencies (HSA's). The HSA's are assisting DOH to identify gaps and to avoid duplication in regional TBI systems. DOH will use its "Certificate of Need" process and other regulatory authority more creatively to encourage thB necessary development for completing the regional TBI systems.

Other regional efforts include the proposed establishment of a series of DOH Regional Resource Coordinators (RRC's) to assist discharge planners and families in identifying timely and appropriate options to service. This concept is closely patterned after a model that TBI project staff observed in Minnesota. The cost-effectiveness that Minnesota had demonstrated was used to seek the necessary administrative approvals for the concept in New York.

The role of the RRC is to be a combination of case manager and technical assistant. The RRC's would closely monitor Medicaid eligible people who have serious TBI and would provide support to traditional case managers, such as hospital discharge planners, internal case managers in rehabilitation counselors, and home care agency case managers. Often, such case managers need specific information about TBI which an outside specialist could provide.

These outside specialists would also be able to provide feedback to TBI project staff on how systems in their region are functioning. When they identify gaps for specific people with TBI, they may be able to assist in the development of new resources, an approach that has been successful in Minnesota and in other sites visited by New York's TBI staff. RRC's would facilitate round table discussions by a diverse group of health and human service providers in the interest of improving access, coordination, and the development of new services. (Parallel discussions would continue at the state level under the auspices of HISCC.) Or, they will provide information which TBI project staff can use to justify policy or programmatic changes.

TBI project efforts to establish financial incentives to support program development have largely focused on Medicaid. While a large percentage of people with TBI are dependent upon Medicaid, many are not. Therefore, future efforts will include an analysis of treatment and outcomes for patients who are covered by other payers. Once such information is gathered, DOH will use its network of contacts with the insurance industry to seek improvements in their reimbursement policies for people with TBI. Documentation of cost-effective opportunities to reallocate resources should be just as persuasive as they have been in the Medicaid program. The high cost of not reforming policy will be documented for use as a powerful tool in future discussions.

Vocational Rehabilitation

The Problem: Since 1986, DOH has worked with VESID on a number of issues, but vocational rehabilitation has not been a primary focus on HISCC. The TBI-NET project components that have examined vocational rehabilitation services have highlighted the need for HISCC to focus more attention on this aspect of service delivery. The success of the Repatriation Program and other community support initiatives described in the following section are dependent upon the development of meaningful vocational programs for persons with TBI.

The Solution: A new committee of HISCC has been created to focus on vocational and adult educational issues, and the resources of TBI-NET will facilitate the work of this committee. Revisiting the subject of vocational rehabilitation is a high priority. As a result of its recent research, TBI project staff have concluded that successful vocational rehabilitation for many more people with TBI is possible. While actual successes in other states have been limited to a few examples, developing strategies to implement these successful approaches in New York should be feasible, since part of New York's mission is to support people with TBI within the community.

Long-Term Support Services

The Problem: People with TBI and their families cannot find or gain access to the limited services that are available. Current case managers usually have conflicting roles attempting to meet the needs of their employer and their client at the same time. Financial incentives for case managers to do a thorough job are inadequate, and many services are not reimbursed at all.

The Solution: DOH is developing a Home and Community Based Services (HCBS) waiver under the Medicaid program for people who have TBI. Medicaid will then pay for case management for those who are eligible. Case managers in this program may be independent of services providers. In addition, HISCC will continue to advocate that Comprehensive Medicaid Case Management services be made available to all Medicaid eligible people who have TBI, not just those eligible for the HCBS waiver. The RCC's will also provide independent oversight and training and technical assistance to other case managers in the system. A primary role for the RRC's will be to facilitate the development of resource lists to be used for the information and referral activities of all case managers, individuals with TBI, their families, and other interested parties in the region. RRC's will cooperate to upgrade existing resource data bases, such as the one maintained by the New York State Office of the Advocate for the Disabled, rather than develop new ones.

Supported Living Services

The Problem: Medicaid, the primary payer of long-term care, has an institutional and medical model bias. As a result, approximately 300 New Yorkers with TBI who could live in the community are living in out-of-state nursing homes, at excessively high cost. Other adults are forced to live with their parents, while an unknown number live in New York State nursing homes or other facilities, such as psychiatric centers.

The Solution: New York is implementing a Repatriation Program. As stated previously, DOH is developing an HCBS waiver under the Medicaid program to provide more appropriate services at lower cost. DOH is committed to structuring the waiver to allow maximum independence, indiviualization, and choice by the person with TBI. While DOH is developing this waiver, the Office of Mental Retardation and Development Disabilities has agreed to develop individualized services appropriate for people with TBI under its existing HCBs waiver and other funding streams. Financing for this initiative will come from an offset in current Medicaid expenditures to out-of-state nursing homes.

Affordable Housing

The Problem: Affordable, accessible, and desirable housing is not available for people with TBI.

The Solution: Advocate for changes in housing policy, but in the meantime, take advantage of opportunities now available by gaining a good understanding of current policy, in part, through deliberations of HISCC. To take advantage of the opportunities available under existing policy, HISCC, the RRC's, and HCBS waiver staff will identify current and likely housing providers, will link persons with TBI and their advocates to these providers, and will facilitate the development of new resources.

Conclusion

This paper is an overview of the evolution of public policy regarding TBI in New York from the perspective of a key participant in the development and implementation of that policy. Policy-makers have often been pessimistic about the possibility of substantial improvement in services for people with TBI in light of ever increasing fiscal restraints. However, this pessimism is being slowly replaced by guarded optisims, as budget examiners begin to see the high cost of taking no action. In 1985, approximately 200 Medicaid recipients with TBI were in out-of-state nursing homes; in February 1993, the number increased to 510. The earlier failures in public policymakine have provided the opportunity for current innovation through policies that will obtain better value for current expenditures. New York's experience in gaining a commitment to action over the past year has been encouraging. The next 1-2 years will demonstrate whether this increased optimism is well founded.

In summary, the following has been learned:

* A comprehensive integrated regional rehabilitation system needs to be developed. Loosely connected partial solutions will lead to continuing gaps, competition, and duplication of services, and inefficient expenditure of public and private resources.

* A regional structure is needed to assure coordination and integration of services, since competition is a prominent element of the current healthcare system. State level support for development of regional systems is essential. While the structure will vary by region, a strong hospital-based rehabilitation program is likely to be the nucleus in most regions. Hospital-based rehabilitation programs must take responsibility, with adequate reimbursement, for the initial assessment and management of persons in coma to assure that they are integrated into a system of optimal care.

* Failure to establish adequate reimbursement for all services will thwart the development of a rational system. Short-term strategies to save money in one public arena often lead to greater long-term expenditures in another public arena, as demonstrated by the increase in New York's expenditures for out-of-state nursing home placements.

* Partnerships between agencies, and between divisions within agencies, are essential for comprehensive solutions. Piecemeal strategies merely shift responsibility for a problem from one agency to another and result in failed outcomes at an overall cost that often is greater than an integrated solution. Each state must have a coordinating structure with responsibility, authority, and resources to facilitate the development of partnerships.

* More creative and effective ways to redirect current public expenditures do exist and can be implemented. Examples include reallocation of Medicaid expenditures from out-of-state nursing homes to support development of better in-state rehabilitation systems and allowing people with TBI to live in the community through an HCBS waiver rather than in nursing homes.

* More effective strategies developed in the public sector can be applied to insurance and private expenditures as well. The state should work directly with insurers and with individuals with TBI and their families to make them aware of innovative ways to use funds.

Notes

(1) Description of these findings is beyond the scope of this article. A full discussion will be forthcoming in the June 1994 issue of the Journal of Head Trauma Rehabilitation. In addition, the National Council of State Legislatures has a recent publication, based in part upon the author's work, entitled, What Legislators Need to Know About Traumatic Brain Injury.