The Delivery of Mental Health Services to Children

JCPN Commentary presents a series of observations, opin- ions, and analyses of issues and trends in education and practice in psychiatric and mental health nursing, and social policy factors that influence families, or the delivery of health services to youth and their families.

According to a 1986 background paper from the Office of Technology Assessment of the U.S. Congress, “we currently know more about how to prevent and treat children’s mental health problems than is reflected in the care available” (Saxe, 1986, p. 3). That this remains true today is obvious to anyone involved in the area of children’s mental health. This seems especially tragic when we project the enormous human and economic costs that are paid when these problems continue into adult life, as is likely to happen when they are not successfully treated during childhood. There are a number of barriers to an adequate nation-wide response to this problem. Some promising new initiatives, however, are being taken to better serve this population.

Documenting the Problems The impetus for these new initiatives comes from two

major sources. The first is a study by Knitzer (1982) for the Children’s Defense Fund. The highlights of her findings were that:

“Of the three million seriously disturbed children in this country, two-thirds are not getting the services they need. Countless others get inappropriate care. These children are ‘unclaimed’ by the public agencies with responsibility to serve them (p. ix).

Knitzer argued that while non-residential services for chil- dren reduce their isolation and are cost-effective, states continue to focus on the development of residential services, the most costly and restrictive service. She noted that studies reveal that 40% of placements for youths may be inappropri- ate (Knitzer, 1982).

The second source of these initiatives for change was a class action lawsuit filed in 1979 against the state of North Carolina, Willie M. et al. v. James B . Hunt, Jr. et al. “The complaint stated that four minors and ‘all others similarly situated’ had been denied the appropriate treatment and education that were rightfully theirs under a series of federal and state statutes and the U.S. Constitution. At the time

the lawsuit was filed, the four minors were in state institu- tions-three in training schools, and one in a psychiatric hospital” (Behar, 1985, p. 190).

Using widely accepted estimates, the Office of Technol- ogy Assessment’s study stated that 12-15% of the nation’s children (7.5-9.5 million) have mental health problems needing treatment (Saxe, 1986). Of that number, an esti- mated 70-80% are not getting appropriate services. The study also identified the importmce of environmental risk factors in causing mental suffering and disability in children, and listed poverty, inadequate care or parenting, parental alcoholism or psychopathology, divorce, abuse. premature birth, and serious childhood illnesses as the most significant of these.

Another element that affects the appropriateness of mental health services is insurance reimbursement, both private and federally funded Medicaid. In testimony before Congress. Saxe (1987) stated that how we pay for mental health care is a central reason for present service delivery problems. He argued that treatment for children was driven by the health care financing system, with the needs of children secondary. This situation provides lack of support for community ser- vices and encourages hospitalization.

As a further indication that the needs of the child are not primary in the service delivery system, the Invisible Children Project of the National Mental Health Association (Zeigler- Dendy, 1989) reported that an in-depth longitudinal study found surprisingly little difference between the diagnosis and functioning of children who are hospitalized compared with those who stay at home. “The criteria which determines whether a child is sent miles from home to be institutional- ized, or admitted for care on an outpatient basis while living with hidher family, is more the availability of comprehen- sive community services and family resources, than the child’s illness” (Zeigler-Dendy, 1989. p. 7).

It has been difficult to generate interagency cooperation to serve these children who are often seen in more than one of the agencies traditionally serving them (i.e., mental health, education, child welfare, and juvenile justice). In these same hearings noted above, Congressman Coats (1987) stated that the problem arises because no one wants to “give up any turf’ or to lose funding or jobs, and each agency feels that it may do a better job than the others for these children.

30 JCPN VOLCMIEJ NUMBER I 1991

A final issue that needs to be addressed is the effectiveness of mental health treatment for children. and, as yet. there are no clear data on this. The obstacles to research are delineated in a I989 report from the Institute of Medicine: “Intrinsic obstacles arise from the complex nature of normal human development and the ethical and pragmatic issues raised by research with infants and young children” (IOM. 1989, p. 4) Extrinsic barriers cited include the shortage of researchers. the limited number of institutional settings for child mental health research. and the limited availability of sustained funding for investigators. Saxe ( 1986) reported that some treatment is better than no treatment. He further argued that the presence and quality of residential treatment and includ- ing families in treatment plans appears to be related to effective treatment outcomes.

Interestingly. the role of the Community Mental Health Centers (CMHCs). which by 1977 were providing 32% of the mental health treatment in this country. was mentioned only briefly in the literature (Roberts. Kurtz, 1987, p. 85). This may be because child and adolescent services were not among the five services mandated by the original legislation (though they were added later). and because a generally accepted assessment in the field is that ”CMHCs developed with a relatively healthy clientele in mind.” rather than those most severely disturbed.

An Initiative for Change

Although documentation of problems in mental health services for children continues, this has not caused a signif- icant change in “business as usual” in services for children. Fortunately, a promising and concerted effort has developed across the nation to finally do sornerhiq about it. Knitzer ( 1984) said why she thinks this situation has changed during the past several years. She cited her own study and others for pointing out the large numbers of children and adolescents underserved and inappropriately served, the growing body of clinical and programatic knowledge about how to treat the “untreatable.” and an increasing concern about the amount of money being spent. often ineffectively, on the most seriously disturbed children.

There has been a recent federal response to this situation that has served as a catalyst for many state departments of mental health. Through the Community Support Program. initiated by NlMH in 1977 to serve the chronically and severely mentally i l l , recent funding has provided 91.5 million through the Child and Adolescent Service System Program (CASSP) to support state efforts to develop pro- grams for their most severely disturbed children (Meyers, 1985).

The CASSP is described in a publication by Stroul and Friedman (1986) for CASSP. The core values of this system of care state that it should be child and family-centered and community-based. Guiding principles include provision for a comprehensive array of services, individualized service plans that are culturally sensitive, and services provided

within the least restrictive, most normative environment possible. Families should be involved in the planning and delivery of services, and case management should provide flexible interagency response. Early intervention and advo- cacy efforts are promoted, and the rights of children to effective treatment should be protected.

A sampling of new or expanded services that would be provided under this program include:

1 , Home-based support services that may include assess- ment and individual or family therapy, help with housing and financial problems, homemaker and care- taking assistance, transportation, and skill training;

2 . School-based early identification programs; 3 , Intensive case management services across agency

lines to ensure flexibility to meet individual needs; 4. Parent support and advocacy groups; 5 . Day treatment and partial hospitalization that are sig-

nificantly less expensive than residential treatment; 6. 24-hour crisis intervention to provide emergency sup-

port as needed; 7. Respite services so that caretakers can have a regularly

scheduled break from their responsibilities; 8. Therapeutic foster homes where parents are trained and

considered part of the treatment team; and 9. Aftercare following residential treatment to maintain

and integrate treatment gains into the child’s home life (Stroul, Friedman. 1986).

This program is indeed a radical departure from what we presently have and does not acknowledge the presence of a political and fiscal minefield of competing interests that would challenge its implementation. Saxe (1987) has dis- cussed the “perverse logic” of Congress and private insurers in allocating funding only to the most severe cases. Robert Friedman (1987) stated that fiscal incentives lead to in- creased profitability for psychiatric hospitals, even though there is no indication that they produce better results than intensive non-residential services. Knitzer ( 1987) pointed out that although everyone knows that a child with emotional problems must have strong parental care and support, mental health professionals cannot get reimbursed for doing work with the natural or foster parents of a troubled child. This led Congressman Coats ( 1987) to conclude that the legislation has to mandate a different kind of funding, in order to force development of a system of care based on CASSP principles.

Programs That Work

In terms of what has been developed thus far, the most advanced system of care has been developed by North Carolina in response to the previously mentioned “Willie M..’ lawsuit. According to Lenore Behar, chief of Child Mental Health Services for North Carolina, when the state decided in 1980 to negotiate a settlement to the suit, they followed the same kind of principles outlined by CASSP (Behar, 1985). They set up a no eiect/no reject policy by

DELIVERY OF MENTAL HEALTH SERVICES TO CHILDREN 31

which they consider every child to be “treatable;” none are excluded from the system. Mental health centers are used as the lead agency in providing case managers, who are seen as the most essential unifying factor in the system. After 5 years, some promising statistics have emerged. There pres- ently are 1,200 certified “class members” who meet the criteria set forth in the Willie M. case. More than half are now receiving a complete, appropriate array of services and the other half are receiving partial service on their way to acquiring the full range of services. The training school population has declined from 150 to 40. Only 20 (less than 2% of class members) are deemed to be too great a risk for community-based programs. Case managers carry 12-1 5 cases at a time, and the cost per child per year comes to $21,700 (Behar, 1985).

Because North Carolina has a comprehensive system set up state-wide, they are clearly the people other states can learn from. Although each state will have to fight its own particular battles regarding funding and coordination of services, they will not have to “reinvent the wheel”on system development. A number of states have already laid the ground work for their programs through funding and pro- gram direction received from CASSP.

An important element of the system, full participation of families in the planning and delivery of services, is beginning to be addressed in several ways. In Philadelphia, the Parents Involved Network (PIN) Project has as its primary goal to organize self-help advocacy groups for parents (Fine, 1987). The Mental Health Association and the National Alliance for the Mentally Ill, though primarily oriented toward advocacy on behalf of adults, are beginning to focus more of their attention on children’s issues (Stroul & Friedman, 1986).

To anyone conversant with the present realities of the mental health care delivery system, “full participation of the families in the planning and delivery of services” is indeed a radical idea. Participation of families as described, given the context of the present system, can hardly be imagined! However, as the notion that children have a “right” to appropriate mental health treatment grows, families will demand this participation, for they are the ones who truly know which services help and which do not.

Another significant effort in developing the most norma- tive, least restrictive environment for seriously disturbed children is being made by the Philadelphia Child Guidance Clinic. Mennis (1987) described two programs to the Select Committee. The Social Rehabilitation Program provides an experienced clinician to spend 10-50 hours per month with the child and family in their own home. The clinicians work on any problem that will help keep the child out of the hospital and at home with the family. The second program, Host Home, provides the same kind of support for children living with foster families, and involvement of the natural family is an integral part of the treatment (Mennis, 1987).

The savings reported by Mennis (1987) in human and

financial terms are significant. The children and families served are able to stay together, which is an incalculable benefit. Measured against the cost of treating a child in a state hospital in Pennsylvania for $lOO,OOO a year, the Host Home Program costs $35,000, and the Social Rehabilitation Pro- gram between $6,000 and $7,000 (Mennis, 1987).

Intensive home-based services delivered by Homebuild- ers, Inc. of Tacoma, Washington, also have demonstrated the efficacy of this form of treatment (Kinney, Madsen, Fleming, & Haapala, 1977). Homebuilders found that a crisis situation motivates families to try innovative ap- proaches to problems that they might be hesitant to try otherwise. Homebuilders provides 24-hour staff availability so the family can get help whenever they need it. More programs with similar aims are being developed across the country.

One issue that is not yet clear to planners is the concern that once we set up systems of care for the most severely disturbed children, will that system also capture and treat children who have just begun to develop potentially serious problems‘? Early identification and intervention are needed, but is that a high enough priority to get funding? Are any of these problems a high enough national priority to gain adequate funding? As with any social policy issue, there is a dynamic tension between what is needed and what society is willing to pay for. But. given the costliness of our presently inadequate system and the number of children and families who go unserved, can we afford not to move toward a system that is more therapeutically effective and financially viable, and, therefore, more humane?

ANN DANIEL, MSW Social Worker

Children’s arid Early Adolescent Psychiatric Uiiirs CommuniQ Hospital North

Indianapolis, Indiana References

Behar, 1.. (1986). A state model for child mental health services: The Sorth Carolina experience. Children Today, MayiJiine. 16-2 I .

Behar. L. (1985). Changing patterns ofstate responsibility: A case m d y of North Carolina. JoitrnalqfClitiiralChildPs~c~hology. l 4 , 188-195.

House of Representatives, One Hundredth Congress. ( 1987). Children’s mental health: Promising rcsponscs to neglected problems. Hearing before the Select Committee on Children, Youth. and Families. Witnesses: Glenda Fine, Robert Friedman, Jane Knitzer, Marilyn Mennis. Leonard Saxe. Congressman Dan Coates. Washington, nC: U.S. Government Printing Office.

Institute of Medicine. (1989). Research on children and adolescenrs with menml. behavioral. and developniental disorders: Mobilking 11

national iniriative. Washington, DC: National Academy Press. Kinney, J. , Madsen. B.. Fleming, T. &Haapala, D. (1977). Honiebuildrrs:

Keeping families together. Journal of Consulting and Clinical Psychology. 45, 4,667-673.

Knitzer. J . ( 1 984). Deivloping sy.Tfenis of carr,for distiirbed children: The role of advocacy. Rochester, NY: Institute for Child and Youth Policy Studies.

Knitzer, J . (1982). Unclaimed children. Washington, DC: Children’s Defense Fund.

Meyers, J.C. (1985) Federal efforts to improve mental health services for

32 JCPN VOLUME4 NUMBER 1 1991

children hreahne a cbcle of Idlure Joirrritrl of Clrnrcrrl C hltf meet public sector needs and help nursing students - . P . c w ~ o / o ~ ? . ~ p c ~ I c r / /.rsue, / 4 i J J . 182-187

Robert>. A.R. . Kurtr. L.F. (1987). Historical perspectives on the care and treatment of the mentally i l l . Jorrrrrtrl of S o c i o / q y \ o r i d Soc~itil W’e/ftrrt~. X I V . Dtwrriber. 75--94

Saxe. L. ( 1986). Children'.\ rtit,nrtil Iirtrlrli: P roblerm trrrd sen K Y J . ti

hocfqrourrd p q w r ( p p . 3-91. OTA-BP-H-33. Washington. DC: U.S . Government Printing Office.

Stroul. B.. & Friedman. R. ( 19861. A swerr i o/ccire,fiw .\ei,t>rc/F wiorrow t i l l \ dr\rurhrd c h i l d r ~ ~ n c r r i d F o r r r h . Washineton. DC: CASSP Tech- nical A\\ihtance Center.

Willie 51. et aI. v . J a m , B. Hunt, Jr. et al. . Civil No. C-C-79-294-M. tU.S Western t h t r i c t Court. North Carolina. 1980).

Zeigler-Dendg. C. ( 19891. F i w l rt’pi~rr orid rc,c.orrrr~~rfi~/~irio,~s uf rlie rmi.\ih/fa cfiiltlrcvi p r o / r ( . / . Aleundria . VA: National Mental Health A.;sociation.

Response to Daniel

Preparation of child!adolescent psychiatric nurses will need to address the new initiatives for better service pre- sented in Daniel‘s article. Our profession can be central in several areas. Educational preparation and continuing edu- cation will need to include the following essentials:

1 , Knowledge of community organization and family support accompanied by clinical practice in developing alliances with parents and qencies in order to effect appropriate linkages.

2. Theory and practice related to the development and management of respite services for particular popula- tions, and the provision of clinical supervision for nonprofessional staff.

3. Theory and practice in facilitating the generation of support groups for parents. foster parents. siblings. and significant others. and in providing consultation to these groups.

4. Theoretical models and research findings related to group and family dynamics. growth and development. therapeutic milieu. self-care. and social support to further develop the nurse‘s unique perspective on 34-hour care responsibility at an advanced practice level.

5 . Preparation in prosram evaluation. basic finance. and research methods to facilitate evaluation of the cost- effectiveness of nursing and other models of care.

6. Specific attention to ethical decision making to stiniu- late commitments to entrepreneurial activities that

come 10 terms with the often competing and conflicting needs for status, connectedness, and autonomy.

7. Specific experience with case management methodol- ogy in order to develop commitment to principles of continuity of care. culturally sensitive and least restric- tive treatment selection, client/fmily advocacy, and interdisciplinary collaboration.

Case management opportunities are particularly impor- tant as they have the potential to provide nurse specialists with the opportunity to develop critical paths for specific subgroups identified by DSM 111-R and/or nursing diag- noses. Consequently, the nurse can deyelop expertise in following specific presenting problems through various care systems and is in an opportune position to identify clinical practice and management problems, develop appropriate research questions and approaches, and test these out in clinical work. The generation of information about critical paths will have major policy implications for the establish- ment of staffing ratios, differentiation of practice levels, and the establishment of an optimal case mix for various profes- sionals and treatment settings.

Faculties in child and adolescent psychiatric nursing will need to be innovative in preparing for the future. The indirect practice roles will need heavier emphasis while the direct practice roles will need to concentrate more fully on the development of respectful family/child relationships in which psychoeducational and advocacy approaches are cul- tivated. Traditional forms of psychotherapy will be less important as increased emphasis will be placed on the development of flexible systems transcending psychothera- peutic relationships. Psychiatric nursing has had a historical commitment to the initiatives noted by Daniel. Operational- ization of nursing’s clinical knowledge in these areas will need to occur through the development of conceptual models for practice and research.

CAROL J . DASHIFF, PhD, RN, CS Coordinaror Child and Adolescent Psychicitric Nursing

Vmderbilt University School of Nursing

Nashville, Tennessee