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Mental Health Services for Children with Disabilities: the Story in California
One year ago, the California Endowment funded Disability Rights Education and Defense Fund, Inc. to undertake research regarding the current state of mental health service delivery to children in California. DREDF's parent advocates and technical assistance staff determined from the great volume of calls from parents experiencing problems in obtaining the mental health services their children require, that vast numbers of children, especially those diagnosed as emotionally disturbed, are not having their mental health needs addressed by the agencies charged with providing these services.
DREDF researched the history of mental health care for children in the state of California, the role of mental health mandates in special education, interagency coordination, funding for children's mental health services, statistical information regarding children diagnosed as emotionally disturbed, children receiving mental health services, and agency reporting practices, and conducted a survey of parents and relevant caselaw.
DREDF's conclusions in brief are as follows:
California has failed to effectively monitor its delivery of mental health services to children. Current reporting practices do not ensure compliance with federal and state mental health mandates for children. DREDF was unable from the data available at the state and federal levels to provide a complete picture of the demand for mental health services among children and whether identified mental health needs are being met.
Agencies charged with providing mental health services to children are not collaborating effectively, and children who do receive mental health services are not receiving them in an integrated, coherent manner. Legislation is in place in California requiring interagency collaboration among various state agencies responsible for delivering mental health services to children, but these agencies continue to operate in isolation, and with inefficient funding mechanisms. The lack of collaboration and the failure to coordinate funding across agencies has meant that children do not receive critical mental health services, because agencies are protective of what appears to be limited resources and do not understand how services can be delivered in a cost–efficient manner while honoring federal and state mandates.
Approximately half of the children who receive mental health services, if at all, receive them in the public school context. Schools are identified as the most effective and accessible place for delivering mental health services to children. Further, public schools are charged by the federal and state governments to provide mental health services to special education students who require such services to benefit from their special education placement. Despite this opportunity to reach children with mental health needs, California schools are not meeting their federal and state responsibilities and shifting responsibility for providing mental health services to other agencies and parents.
Mental health funding in California is a complex puzzle of federal and state funding sources, each addressing specific services and populations. For children, the primary areas of funding are the federal Medicaid and Early and Periodic Screening, Diagnosis and Treatment programs, California's Healthy Families program, and California's school finance system. While agencies have declared that funding for mental health services is inadequate, DREDF research revealed that the funding that is available is not maximized, and while agencies are preoccupied with preserving what appears to be limited resources, agencies fail to provide needed services to eligible children. Coordination in this regard would go a long way in stretching existing resources and ensuring service delivery among agencies is not redundant.
From these conclusions, DREDF offers the following recommendations, in brief:
Specific local barriers to the full integration of children's mental health service delivery among agencies should be identified.
Fiscal barriers to integrating children's mental health services among agencies should be identified.
Current funding schemes should be revisited, and the potential for pooling funds among agencies should be investigated.
Greater outreach and training should be conducted to educate parents and agency personnel regarding the availability of mental health services through special education and state and federal mental health funding programs.
Agency personnel should be cross–trained regarding the mandates and services of other children's service agencies, and procedures for coordinating services.
Required local interagency agreements should be collected from individual counties to encourage the formation and review of interagency agreements.
The "Wraparound Pilot Project" should be analyzed and its strengths, weaknesses, sustainability, and best practices should be identified.
California's data collection practices should be revised to allow for effective monitoring of the assessment of children's mental health needs, treatment, and compliance with federal and state guidelines.
Juvenile justice personnel should be trained regarding special education and mental health mandates.
Compliance with the newly enacted California Rules of Court requiring juvenile courts to be guided by federal and state special education and mental health mandates should be monitored.
The California Endowment and DREDF shall convene a one-day symposium to address the conclusions of this report, and begin to develop the recommendations listed above. The California Endowment remains uniquely situated to continue investigating the mental health care needs of children and helping parents and advocates develop real solutions for effective systems change.
Examination into the needs of mentally disabled children has been a recent phenomenon. Despite the fact that only three decades have passed since our nation began to recognize that children with mental illness were not being adequately served by existing mental health care models, dramatic steps towards a more child and family friendly system have been made. The System of Care, the new children's mental health care service model, has taken hold in most states, and was recently implemented statewide in California. More recently, the Wraparound system has been implemented in select counties and represents a departure from the fragmented, isolated service delivery of the past, in favor of treating the child in all aspects of her life. While these ideals are now becoming part of our service systems, a disproportionate number of children are still without the mental health services they need to succeed in life, especially children at or near the poverty level, and in high-risk categories, such as the seriously emotionally disturbed.
The Surgeon General of the United States has recently found that half the children who do receive mental health services receive them exclusively in their schools. In public school, children with disabilities are entitled to a free and appropriate education, and related services when necessary to enable them to benefit from that education. Related services include a broad range of services, including mental health services, which like the child's education, are to be delivered at no cost. Therefore, mental health services delivered pursuant to a child's special education plan may be the only mental health services a child without resources receives. Often, however, children who require mental health services to benefit from their individual education plans do not receive them, despite the existence of funding mechanisms and federal and state mandates to deliver these services.
There are various reasons why children are not receiving the mental health services to which they are entitled. One reason is the lack of interagency coordination between the various service agencies charged with providing services to children. Another reason is the complex and restrictive funding systems under which certain services are mandated. Finally, agencies simply are not aware of their obligations to deliver mental health services to the children they serve.
Data regarding the effectiveness of existing systems is not easily gathered, because the state agencies that are obligated to monitor children's mental health and education programs are not actively seeking the information that would assist in determining how mental health services are delivered. Reporting practices do not promote accountability and fail to offer an effective means for tracking local compliance with federal and state special education and mental health mandates.
This report will explore the current children's mental health delivery systems, the deficiencies and barriers to service delivery, and provide recommendations for change. This document should help parents, advocates, and policy makers in understanding how the children's mental health system works, and how they may assist children to access the mental health services they need to thrive.
Disability Rights Education and Defense Fund, March 2001
PROGRAM AND ACTIVITIES FUNDED
There is a severe crisis in the provision of mental health services to children and youth with disabilities in California. While the public is bombarded with sensational headlines decrying school disruption and violence, some of it attributed to students with disabilities, the discouraging and unpublicized reality is that California lacks an effective service delivery system for the provision of mental health services to thousands of children with disabilities. These children are overwhelmingly at risk for dropping out of school, unemployment, and incarceration.
DREDF receives about 2,000-3,000 calls each year from parents of children receiving special education, primarily living in the Bay Area counties. Approximately one third of the parents who call DREDF have children with unmet mental health needs. From these individual calls, from parents who attend DREDF trainings, and from colleagues in the field, including staff of the twelve federally-funded Parent Training and Information (PTI) Centers in California, DREDF observes that:
The vast majority of children who need mental health services do not receive any.
Schools invariably will support only the recommendations in the mental health assessment, even though there may be a bias against prescribing treatment because of limited resources.
Timelines are frequently ignored; parents report that getting the mental health assessment takes months, if they are done at all.
County mental health services and schools do not coordinate their services for a particular child; contact between the child's teacher and the mental health provider is rare even when children are placed in special classes and schools for emotionally disturbed children.
Many teachers, especially those working with children with severe emotional and behavioral disabilities, lack the proper credentials and training to teach these children and receive no supervision from mental health professionals.
In the rural areas of California, access to services is further diminished.
Culturally appropriate and language–appropriate mental health services are mostly nonexistent.
Children's mental health needs are frequently misdiagnosed as language or cultural problems.
Non–English–speaking parents do not have access to information about the mental health services to which their children are entitled.
Low–income parents with no resources have difficulty pushing the system to secure appropriate mental health services for their children.
Recent state and federal investigations and reports regarding the poor state of mental health service delivery to children coincide with the recent statewide implementation of the "System of Care" and experimentation with "Wraparound" services as a means of comprehensively addressing the mental health needs of children in school, at home, and in their communities. With this backdrop, DREDF and the California Endowment embarked on a partnership to investigate the current state of children's mental health service delivery in California last year. The findings of this investigation are reported herein.
The Disability Rights Education and Defense Fund, Inc. (DREDF) is a national law and policy center dedicated to strengthening and protecting the civil rights of people with disabilities. Founded in 1979, DREDF carries out its mission through programs in training, education, research, local and national policy monitoring and development, advocacy and litigation. All of DREDF's work serves the long-term goal of the full integration of people with disabilities into the mainstream of American life. DREDF is headquartered in Berkeley, California, with a governmental affairs office in Washington, D.C.
The legal and policy arm of the independent living movement, DREDF is unique among disability groups for several reasons:
DREDF represents the interests of people with disabilities as a class, without regard to particular disability.
DREDF was founded by, and is still primarily led and staffed by, people with disabilities and parents of children with disabilities.
DREDF works on behalf of adults and children with disabilities. DREDF has always worked to uphold the rights of children with disabilities to obtain the education and related services the laws guarantee them.
DREDF maintains an active grassroots network in the disability communities in every state, and is also a power at the highest levels of national policy–making.
DREDF currently serves thousands of individuals each year, providing technical assistance and information, referrals, training, advocacy and legal representation both in administrative hearings and in court. DREDF serves clients with claims of disability-based discrimination in employment, housing, access to public accommodations, transportation, state and local governmental services, and education. DREDF devotes one-third of its resources each year to assisting parents of children with disabilities to become capable self-advocates, so they may obtain the special education and related services the laws guarantee for their children.
Research began with a review of the pertinent legislation governing children's mental health entitlements and special education laws and regulations at both the federal and state levels. From this research DREDF identified the principal agencies involved in children's mental health service delivery. Individuals in these agencies were interviewed regarding the programs over which their agencies are responsible, specific provisions in the laws governing the agency's activities, data collection and monitoring procedures, policy and technical assistance documents, numbers of children served and services provided, funding mechanisms, interagency agreements, and model practices.
Federal agency reports were reviewed for information regarding compliance with federal laws. Numbers and data regarding funding sources, such as the Medicaid and Early, Periodic Screening, Diagnosis and Treatment programs, California's Healthy Families, and the prevalence rates of emotional disturbance, were obtained from reviewing federal and state reports. Best practices, an overview of current mental health delivery issues and the emerging models for children's mental health service delivery were obtained from a review of current journals and articles written by mental health professionals.
Anecdotal information regarding the realities of obtaining mental health services for children was derived from parent interviews and surveys, as well as a review of formal complaints and their dispositions.
This document will provide an overview of children's mental health service delivery systems in California, including the role of education in providing mental health services, federal and state mental health mandates in special education, interagency coordination in California, children's mental health funding mechanisms, current reporting practices and available data, parent/student experiences in accessing mental health services in the special education context, and recent trends as derived from a review of formal complaints. This document will also provide recommendations for improvement and systems change, and describe DREDF's ongoing efforts in improving access to mental health services for children.
Overview of Children's Mental Health Systems in California
Our nation's re-examination of the needs of children with mental health disorders has been traced to 1969, when the federal Joint Commission on the Mental Health of Children found that children with mental health service needs went without services, or were served in inappropriate, excessively restrictive settings. Subsequent studies only reaffirmed the commission's findings. The bridge between this recognition of a problem in children's mental health service delivery and the present day is a report entitled Unclaimed Children, published by the Children's Defense Fund in 1982. This report found that of the approximately 3 million children with serious emotional disorders in the United States, 2/3 of these children were not receiving any services, or were receiving inappropriate services. The study found that these children were "unclaimed" and thus abandoned by the agencies charged with serving them, and that it was time for agencies to coordinate their systems of care to effectively serve children and their families.
Since the seminal Unclaimed Children, state and county systems have begun to turn away from viewing their agencies as isolated entities and are recognizing the need for interagency collaborations and shared goals. The existing systems may be different from earlier models, but are far from the seamless series of providers envisioned by the "system of care" pioneers. The progress that has been made, however, should indicate the potential for even more revolutionary strides towards greater service integration and healthier children and families.
The System of Care Concept
The "System of Care" (SOC) recognizes that children and youth with serious emotional disturbances will more frequently have problems at home, in school, and in the community at large (Hendrickson, 1995). Human service agencies were originally established to address these as discrete areas of need, and therefore seemed to operate in isolation from one another. In order to address the needs of an emotionally disturbed child, collaboration among agencies is necessary. Various agencies may at one time or another become involved in a child's life, including schools, mental health agencies and juvenile justice. These agencies are required by law to work as partners, and this collaboration is crucial to the evolution of a more effective mental health service delivery system for children.
Central to the criticisms that led to the development of the SOC model is the disconnect between a child's mental health and education, when educators, who are daily involved with the lives of our children more than any other agency, have the natural ability to recognize and assist in redressing emotional, behavioral, and educational problems that face children and their families (Hendrickson, 1995).
The movement towards the SOC model represents a paradigm shift. The SOC focuses on the family, rather than the effects of the child's mental disorder. Parents are also viewed differently and are regarded as partners in treatment, rather than adversaries or the cause of their child's problems. The SOC attempts to create alliances among formal and informal partners in the care of children with mental health service needs (Appendix A). Institutionalization is the exception, and services are delivered at home, in school, and in the community. Recognition of the importance of family and community roles in the treatment of children with mental disorders also means recognition of the need for culturally competent services. This paradigm shift can be illustrated as follows:
Focus on Child
Focus on Family
Emphasize Child Deficits and Pathology
Emphasize Child and Family Strengths
View Parents as Clients
View Parents as Partners
See Parents as Cause of Problem
See Parents as Part of the Solution
Color and Culture Blind
Offer Office-Based Services
Offer Office, In-Home and Community-Based Services
Provide Placement for the Child
Try to Prevent Placement of Child
Individual Clinicians Working with Individual Clients
Service Team Concept
Focus on Conditional Treatment
Focus on Long-Term Commitment, Unconditional Care, No Eject/No Reject Policy
Focus on Interventions
Collaborated Integrated Service Development and Delivery
Voice, Ownership, Access, Quality and Accountability
System of Care Characteristics
Source: A Guide to Implementing Children's System of Care in California, Cathie Wright Technical Assistance Center, 1998.
The SOC in California
The SOC was developed in California in 1984 to address the needs of a specific target population, identified as children with the most serious emotional problems, and their families. These children were further identified as those already in or at risk of out-of-home placement and those in special education and entitled to services pursuant to Chapter 26.5 of the California Education Code (discussed infra). The SOC program began in one pilot county and in subsequent years, legislation increased state funding to include additional counties. The Fiscal Year 2000-2001 Budget Act finally made it possible to implement the SOC statewide, by providing allocations to all counties. The 2000-2001 allocation totaled $44.7 milli
The SOC as adopted in California requires the agencies involvedschools, mental health, juvenile justice, and social servicesto enter into interagency agreements to assist with resource coordination when children may access these various agencies concurrently (Cal. Wel. & Inst. Code § 5866 (e)). Research indicates that this coordination effort has not yet fulfilled the promise of the SOC, but some basic requirements for effective interagency partnerships have been identified:
- Agencies must respect the laws and policies of their partners.
- Agencies must become familiar with the "culture" of their partners.
- The child and family populations served by each partner must be understood and respected.
- Agencies must devote time to developing the collaboration.
- The partnership must take place at all agency levelsfrom top level administration to the frontline staff.
(Jordan, 1998). A series of SOC program standards and quality indicators developed through a study of California's first SOC pilot project is attached as Appendix B.
The Wraparound Concept
In addition to the SOC, California has been implementing "wraparound" services, which provide eligible children an alternative to group home care. Wraparound services are characterized by the following:
- Families exercise a high level of decision-making power.
- Treatment teams are fully committed to the child and family.
- Treatment is based in the community and uses the family's natural supports (extended family members) and resources (churches)
- Treatment is team-driven, towards an individualized service plan.
- Treatment is culturally competent.
- The treatment plan is developed and implemented based on an interagency collaborative process with the community or neighborhood.
- Services are formal and informal, with a greater reliance on informal, community and family resources.
- Teams are adequately and flexibly funded.
- Outcomes are measured by the system, the program, the child, and her family.
(California Mental Health Planning Council, 2000).
Wraparound services target the same population that the SOC addresses: children with serious emotional disturbance, at risk of or already in out-of home placement. The caveat here is that eligibility is not based on a child's participation in a special education program as with the SOC target population, although the wraparound services that may be provided may encompass education-related needs. Services are ideally delivered pursuant to a series of meetings with professionals from the child's school, the local mental health agency, juvenile justice (if applicable), the child's parent, extended family members who will become part of the wraparound team, and other individuals from the child's community as appropriate. These meetings are intended to identify the family's needs and create a plan for addressing these needs, as well as to reassess the family's situation. Typical services provided in wraparound treatment include support groups for parents, respite care, community activities that involve the child's strengths and interests, and developing a student study team to address school problems.
The Wraparound Pilot Project (Senate Bill 163) is scheduled to end in 2003, and whether the project goes statewide will likely depend on county data regarding outcomes under the project. The effectiveness of the program is therefore not clear, but is a natural outgrowth from the SOC philosophy that California and many other states have adopted as their children's mental health delivery model.
Mental Health Services in Special Education
The Surgeon General recently recognized that half of the children in the United States who require mental health services receive them, if at all, through the public school system. The same report also states as its foremost finding that the majority of children in need of mental health services (approximately 75 to 80%) do not receive them (U.S. Department of Health and Human Services, 1999).
In California, it is estimated that there may be up to 864,000 children diagnosed as seriously emotionally disturbed (SED), aged 017, who require public mental health services, yet do not receive any (Appendix C). Schools are recognized as the most likely place where a child may be diagnosed and treated for a mental disorder, but this high prevalence estimate for serious emotional disturbance (864,000) is monumental in comparison to the numbers of students actually recognized as seriously emotionally disturbed. State data shows that 21,325 students with SED received special education and related services in 1998-1999. California Department of Mental Health data estimates that 22,633 students received mental health services required by their Individual Education Plans (IEPs) the same year. The high prevalence rate of SED in comparison to the low number of students who are actually recognized as needing mental health services and who allegedly receive mental health services in the special education context represents an enormous gap where our most at-risk children may be found.
Another characteristic of the community of children accessing or requiring public mental health services is the high prevalence of communities of color that access public services and are found in special education, disproportionate to their percentages of the total general population (U.S. Department of Health and Human Services, 1999). This is true especially for the African-American population (U.S. Department of Health and Human Services, 1999). The Surgeon General observed that in one California county, African-American youths are overrepresented in the juvenile justice system and in special education classes for the emotionally disturbed (Surgeon General, 2000). A recent U.S. Department of Education report affirms the finding that African-American students account for a greater percentage of the special education population than their share of the general population (U.S. Department of Education, 2000). The conclusion of various studies is that children of color are less likely to receive the mental health care they need than other children (U.S. Department of Health and Human Services, 1999). The high prevalence of children of color in the special education system, combined with the finding that these children's mental health needs are not served generally, points to the potential for schools to successfully address the mental health needs of children of color.
Investigating the status of mental health service delivery in conjunction with special education services and the place of the school in the SOC can provide information necessary to close the gap between the recognition of mental disorders in children and successful treatment. Federal and state education and mental health mandates intersect in the school context and provide California the perfect opportunity to address the needs of our most at-risk youth.
Federal Education and Mental Health Mandates Impacting Children with Mental Disabilities: The Individuals with Disabilities Education Act
The first comprehensive federal special education law was enacted in 1975 (Education for All Handicapped Children Act) and was most recently amended in 1997, as the Individuals with Disabilities Education Act or IDEA. Children with disabilities are guaranteed a right to a free, appropriate public education. Children with disabilities are also entitled to an education in the least restrictive environmentin other words, unnecessary segregation or placement outside of regular classrooms is to be avoided. States receive funds for special education programs under the IDEA, but must demonstrate to the U.S. Secretary of Education that policies and procedures are in effect that fulfill the requirements of the law. The Office of Special Education and Rehabilitative Services, U.S. Department of Education conducts oversight of state IDEA programs.
Children must have one of the disabilities listed in the IDEA statute and implementing regulations in order to qualify for special education and "related services." These disabilities are as follows:
- Mental Retardation;
- Hearing Impairment;
- Speech or Language Impairment;
- Visual Impairment;
- Emotional Disturbance;
- Orthopedic Impairment;
- Traumatic Brain Injury;
- Other Health Impairment;
- Specific Learning Disability; and
- Multiple Disabilities
- A statement of present levels of educational performance (how the child's disability affects involvement/progress in the general curriculum and participation in appropriate activities);
- A statement of measurable annual goals related to meeting the child's needs that result from the disability, to enable participation in the general curriculum or appropriate activities, and other educational needs resulting from the child's disability;
- A statement of special education and related services, including supplementary aids and services, program modifications or support, to allow for the child's advancement toward the annual goals, involve the child in the general curriculum, and facilitate participation in extracurricular and other nonacademic activities
- Counseling and guidance
- Psychological services, other than assessment and development of the IEP
- Parent counseling and training
- Health and nursing services, and
- Social worker services.
- Student has been assessed by the LEA as requiring special education services and suspected of needed mental health services
- Parental consent is obtained allowing the student to be referred to county mental health for a mental health assessment
- Student has emotional or behavioral characteristics that
- Are observed by qualified educational staff
- Impede the student from benefiting from special education services
- Are significant (as determined by rate of occurrence and intensity)
- Are not considered just social malajustment (demonstrated by deliberate noncompliance with accepted social rules, inability to control unacceptable behavior, absence of treatable mental disorder)
- Are not considered to be the result of a temporary adjustment problem that can be resolved with school counseling
- Student's cognitive level is sufficient to enable her to benefit from mental health services, and
- The school has already provided counseling, psychological or guidance services and the IEP team has determined that these services do not meet the student's educational needs, or, when such services would clearly be inappropriate, the IEP team has documented what services were considered and reasons for rejection.
- The DMH has reported that over 95,000 children accessed mental health care through Medi-Cal (Medicaid) funded services in 1993 (Children's Advocacy Institute, 2000).
- A study reports that approximately 1 million California children are eligible for Medi-Cal, but are not enrolled (Children's Advocacy Institute, 2000).
- Approximately 2.03 million children were enrolled in Medi-Cal at the start of 1998 (Children's Advocacy Institute, 2000).
- What data collection systems exist at the local and state levels for education and mental health agencies?
- How many children are being assessed for their mental health needs?
- How many children are receiving the services specified in their assessments?
- How many children are being served under an AB 3632 referral?
- What services are children receiving as a result of an AB 3632 referral?
- How many children are receiving mental health services through Medi-Cal or EPSDT?
- What mental health services are children receiving from their schools?
- Where are mental health services provided?
- Who is providing these mental health services?
- How are mental health services and educational services coordinated?
- How does the State of California monitor the delivery of mental health services and compliance with special education laws?
- Parental requests for mental health services for their children are repeatedly ignored.
- Schools make cursory efforts to deal with children's mental health problems without engaging county mental health.
- Counties and LEAs are not offering the array of services required by law to meet the mental health needs of children.
- Timelines are not being met by the school district or CMH.
- Parents without representation are at a great disadvantage in seeking services for their children.
- No choices are provided for residential placement or treatment and often children are waiting for services, even if suicidal.
- Parents are rarely informed of rights under AB3632, and are not told that services exist until their child is in crisis.
- Parents are frequently denied assessments.
- Parents are told that there is a waiting list for referral, assessment, and placement.
- County mental health representatives not appearing at IEPs.
- County mental health departments and LEAs spend a great deal of time arguing over whose assessment is accurate, what services are needed, and who will pay for services.
- LEAs are recommending more restrictive, residential, out-of-home placements over offering behavioral programs that permit children to be educated in a less restrictive, regular classroom environment.
- LEAs take years to determine whether a child qualifies for special education and related services, and often find that children are eligible only once a child begins to exhibit severe behavioral and emotional problems, endangering the child's mental health and depriving the child a free and appropriate public education.
- Mental health service providers unilaterally make changes to services (i.e., to frequency, duration) or cancel services altogether, without conferring with the IEP team, thus depriving parents, teachers, and other service providers their input and depriving children of related services needed for their mental health and/or educational programs.
- The full array of related services required by law are not made available, especially parent training and counseling and behavioral interventions, depriving children of appropriate placements.
- County mental health departments are not obtaining parental approval for assessment plans, depriving parents the opportunity to provide input into the assessment procedures and their children's mental health needs.
- Required mental health personnel are not attending IEP meetings.
- Classroom teachers are not made aware of the mental health components of student IEPs; teachers and mental health providers are not consulting with one another although a student's IEP may require consultation and conferral between classroom teachers and mental health personnel
- LEAs delay in making AB 3632 referrals to county mental health.
- There are lengthy delays in the provision of mental health services through county mental health.
- IEPs do not contain descriptions of the objectives of mental health services to be provided, or criteria for evaluating whether the objectives of mental health services are being fulfilled, as required by law.
- LEAs fail to reassess students' mental health service needs as frequently as required by law (at least every three years or more frequently when conditions warrant).
- How many students require mental health services to benefit from their special education programs but are not receiving such services?
- What array of mental health services is available in each county?
- The length and duration of services provided?
- Frequency of assessments for mental health services?
- How many counties maintain waiting lists for services? How many children are on these lists?
- Parents of children receiving mental health services through AB 3632, Medi-Cal/EPSDT, or Healthy Families;
- County mental health department personnel;
- School administrators, teachers, and mental health personnel; and
- DREDF staff.
- The most critical mental health services required by children;
- The fiscal barriers to providing a full array of mental health services to children;
- The need for dialogue regarding the interaction of mental health and special education mandates;
- The effective involvement of parents and extended family members in the process of serving the mental health needs of children;
- The needs of county mental health departments and local education agencies in providing mandated mental health and education services; and
- What steps should be taken to ensure effective service delivery and outreach to underserved populations.
- Necessary steps for systems change.
(20 U.S.C. § 1401(3)(A); 34 C.F.R. § 300.7(a)(1)).
School districts and other public entities are required by IDEA to actively seek out children who may have a disability and develop systems to identify, locate, and evaluate children with disabilities. States must establish a child's eligibility for special education and related services by assessment by trained personnel within specified time limits.
Federal Special Education Timelines
Once a school determines a child requires special education services, an Individualized Education Plan (IEP) meeting must be scheduled to discuss the child's present level of educational performance, special education needs, services to be delivered, objectives, timelines for completion, and assessment of progress. Members of the IEP team include: the child's parents, at least one regular education teacher (if the child is or may participate in a regular education environment), at least one special education teacher or provider, a representative of the Local Education Agency (LEA), someone who can interpret evaluation results, others at the discretion of the parents who may have special expertise regarding the child, and the child, if appropriate (20 U.S.C. § 1414(d)(1)(B); 34 C.F.R. § 300.344(a)).
The following are some of the IEP elements required by IDEA:
(20 U.S.C. § 1401(3)(A); 34 C.F.R. § 300.7(a)(1)).
Special education is defined by IDEA as "specially designed instruction, at no cost to parents, to meet the unique needs of a child with a disability" and includes "instruction conducted in the classroom, in the home, in hospitals and institutions, and in other settings." (20 U.S.C. § 1401(25), 34 C.F.R. § 300.26(a)(1); 20 U.S.C. § 1401(25)(A)-(B), 34 C.F.R. § 300.24(a)(1)(i)-(ii)). "Related services" that are necessary for children with disabilities to benefit from special education services are also required by IDEA, and may include transportation, speech/language pathology and audiology services, psychological services, physical and occupational therapy, recreation, counseling services, orientation and mobility services, among other services (20 U.S.C. § 1401(22); 34 C.F.R. § 300.24 emphasis added).
IDEA mandates states to serve the educational needs of students with disabilities. Public schools, in turn, must be equipped to provide not only educational instruction, but also to provide whatever services may be necessary to allow students with a disability to benefit from their educational program. These related services will include mental health services for a children with emotional disturbances and other disabilities.
Educational and Mental Health Mandates in California
California, along with every other state in the nation, has adopted special education legislation that reflects the federal mandates above, and provides further specific timelines and details regarding assessment and delivery of special education and related services (Cal. Educ. Code § 56043). California uses the term "designated instruction and services" to describe "related services." California's "designated instruction and services" include the following mental health related components:
(Cal. Educ. Code § 56363(b)(9)-(13)).
While local education agencies (LEAs) are ultimately responsible for delivering mental health services necessary for a child to benefit from special education, California, along with most other states, found it necessary and beneficial to seek coordination among the many agencies that are charged with providing services to children in different contexts, to avoid the fragmented and duplicative service scheme that evolved over the years as a result of various agencies working in isolation from one another.
Assembly Bill 3632: Interagency Responsibilities for Related Services
California law generally requires that the State Departments of Health Services, Mental Health (DMH), Developmental Services, Social Services, Rehabilitation, Youth Authority and the Employment Development Department enter into written interagency agreements with the Superintendent of Public Instruction governing the provision of special education and related services to children with disabilities (Cal. Educ. Code § 56475). LEAs, feeling burdened by their obligation to deliver needed mental health services to children in special education, sought to relieve this burden by shifting the responsibility for certain mental health services to another agency. Parents were also seeking alternatives to relinquishing custody of their children to the juvenile justice system in order to obtain needed services from local mental health agencies (Bingham, 1997). California attempted to address this problem in 1984 with Assembly Bill 3632 (AB 3632). This legislation, effective 1986, added Chapter 26.5 to the California Education Code and related sections of the Welfare and Institutions Code, and addresses the delivery of mental health services to seriously emotionally disturbed children who qualify for special education.
Behind AB 3632 is the union of federal and state special education objectives and California's interest in providing needed mental health services in the most cost-effective manner possible. The legislature intended that "the local education agency and the community mental health service vigorously attempt to develop a mutually satisfactory placement [for the child] that is acceptable to the parent and addresses the pupil's educational and mental health treatment needs in a manner that is cost-effective for both public agencies, subject to the requirements of state and federal special education law, including the requirement that the placement be appropriate and in the least restrictive environment" (Cal. Gov. Code § 7576(a) emphasis added).
AB 3632 called upon various state agencies, including the California Department of Education (CDE) and the DMH, to coordinate their service delivery regarding a number of service needs to students who receive special education services. Final regulations require that LEAs and county mental health enter into interagency agreements. C.C.R. § 60030. While these agreements are required by law (and must be referenced in order to obtain approval for a local plan application), neither CDE nor DMH seek copies of these agreements and therefore cannot verify, except by relying on representations in local plan applications, that these agreements have been executed. Further, the AB 3632 regulations require that these local agreements be reviewed at least every three years. The parties responsible for this review are local mental health directors, the LEA director, or their designees (C.C.R. § 60030). Monitoring the development and maintenance of these interagency agreements would require contacting individual LEAs and/or county mental health departments across the state. Research uncovered a "model" agreement, which is used by DMH staff as an example in statewide trainings on interagency coordination (Appendix D).
The interagency agreement is intended to memorialize procedures for monitoring compliance with special education timelines, resolving interagency disputes, referral package requirements, the procedures for developing an assessment plan and implementation, procedures for IEP review, how space, staff and services are to be coordinated at the school site, and other procedures necessary to service coordination (C.C.R. § 60030). Coming to agreement regarding these issues has been difficult for counties and LEAs, and several problem areas, including restrictive funding, lack of qualified staff, different service philosophies, and differing assessment guidelines have been barriers to successful collaboration. For example, mental health professionals and education professionals must contend with different definitions of what constitutes SED (Bingham, 1997). Further, mental health and education professionals historically have served different populations and have operated with differing levels of federal and state oversight, as well as different funding mechanisms and legal obligations (Bingham, 1997). Successful collaboration under AB 3632 or in the SOC model requires these agencies to step outside of these historical boundaries, which may require dramatic systemic changes that the existing laws and funding schemes may not be able to accommodate.
Under AB 3632, emotionally disturbed students in special education are referred to county mental health agencies when the LEA has determined it cannot provide specific mental health services that are required for a child to benefit from special education. AB 3632 regulations set forth the following criteria for determining when and how a child should be referred to county mental health, as well as what the LEA must demonstrate in order to seek a county mental health assessment:
(Cal. Gov. Code § 7576(b); 2 C.C.R. § 60040).
The foregoing criteria is meant to ensure that LEAs do not make automatic referrals to county mental health and avoid their ultimate responsibility to provide related or specially designated services to special education students. LEAs are required by IDEA to provide mental health services when these are related to a student's special education program. While in California, AB 3632 places responsibility on county mental health for delivering mental health services to eligible special education students, the LEA is ultimately responsible for ensuring these needed services are provided.
Once the IEP team determines referral to county mental health is appropriate, a referral packet, incorporating the IEP team findings must be assembled and transmitted to county mental health within one workday. Within five days of receiving the packet, county mental health must determine if further assessment is necessary or appropriate. If the referral is incomplete, the school must be notified within one workday of county mental health receiving the incomplete packet. If an assessment is deemed appropriate, county mental health provides the parent with a consent form. Once the consent form is returned by the parent, county mental health has one day to contact the school to arrange for an IEP meeting to discuss the results of the assessment. This IEP meeting must take place within 50 days of the parent's submission of written consent for assessment of the student. Once county mental health presents its findings, these findings become the recommendations of the LEA IEP team members by law (2 C.C.R. Sec. 60045).
AB 3632 Referral Timelines
AB 3632 referrals can also be made by juvenile courts regarding children who have been adjudged to be a dependent of the court (Cal. Wel. & Inst. Code § 362). An estimated 20% of children with emotional disabilities are arrested at least once before they leave school (Office of Juvenile Justice and Delinquency Prevention, U.S. Department of Justice, 2000). Generally, youth with learning disabilities or an emotional disturbance are arrested at higher rates that non-disabled peers (Burrell, 2000). Instead of recognizing the opportunity to treat these children, juvenile courts have used the system to warehouse children suffering from mental illness (Coalition for Juvenile Justice, 2000). The lack of integration between juvenile justice, schools, and social service agencies, and the failure to inform parents regarding the mental health service rights of their children has led parents to believe that the only way their emotionally disturbed child can get help is by surrendering them to the juvenile courts (Coalition for Juvenile Justice, 2000). In these circumstances, the court may join in the juvenile justice proceeding any agency or private service provider that the court believes failed to meet a legal obligation to provide services to the child. If the court then finds that the agency failed in meeting its obligation to the child, the court can order services.
The power of juvenile courts to facilitate coordination between juvenile justice and schools and county mental health departments is strengthened by recent amendments to the California Rules of Court, which require juvenile court judges to be guided by the principle that youth that appear before the juvenile court may be entitled to special education and related services, and that the cost of incarceration of such a child is greater than the cost of educating that child (Cal. Rules of Court Sec. 24, subd. (g)). The Rules of Court further call upon juvenile court judges to take responsibility for ensuring a child's educational needs are met, and to refer the child for an assessment if suspected of requiring mental health services (subd. h.) As these additions became effective in January of this year, it is too early to know how these directives will affect collaboration between juvenile justice, schools, and county mental health departments, but there seems to be potential for reaching formerly unclaimed children.
Information provided by families and advocates, as well as a survey of complaints filed against mental health departments and school districts regarding AB 3632 referrals and services (discussed further infra) indicate that there is still confusion among LEAs and local mental health departments regarding their respective responsibilities. Further complicating the children's mental health delivery system is the current funding scheme. The limits of categorical aid, a lack of understanding of how Medicaid mental health mandates interact with special education mandates, California's failure to maximize these available sources of funding, and the overall inadequacies of California's mental health funding scheme create a puzzle which many agencies are unable to solve, leaving children without the mental health care they require.
Funding for Children's Mental Health Services in California/p>
The most complicated task involved in analyzing the current status of mental health service delivery to children in California was investigation into the many funding streams available to mental health service providers. Analysis of the fiscal aspects of children's mental health service delivery requires an understanding of California's school finance system, the mental health finance system, and the various funding and reimbursement mechanisms available to the states in both the educational and mental health contexts. In turn, the availability of these sources of funds is dependent on the delivery of specified mental health services to eligible children. As described above, various agencies are involved in delivering mental health services to children, and many of these agencies do not understand the interaction and application of these funding sources, thereby failing to take advantage of what funding is available and leaving scores of children without needed mental health services.
California's School Finance System
California's school budget is comprised of general funding derived from property taxes and the state general fund, and categorical funding, which consists of over 50 separately funded programs. The largest of these categorical funds is devoted to special education, the program within which schools are required to recognize and serve children's mental health needs.
General funds are guaranteed at a specified level under Proposition 98, which provides for a minimum amount of state funding for K-14 education. The expected appropriation for 2001-2002 is $32,205 million (California Department of Education, 2001). This amount represents a little over half of all general-purpose funds a local education agency has at its disposal; much of the remainder is made up of revenues from local property taxes, the state lottery, federal funds, and other local funds. For 2001-2002, this total amounts to approximately $21 million (California Department of Education, 2001).
Categorical funds are appropriated and allocated for specific purposes. While some categorical programs are voluntary, others, such as special education, are mandatory. If the categorical funds do not support all the activities required by the program, local education agencies are still required to pay the full cost.
Special education funding is determined by the total number of all pupils enrolled in a Special Education Local Plan Area (SELPA), rather than the number of special education pupils enrolled in specific educational programs. A SELPA usually consists of several school districts and is organized to administer special education funds. When a school district is large, the district itself is regarded as the SELPA and administers its special education funds directly. School districts are not required to identify either the number or placement of special education pupils for state funding purposes. Each SELPA is responsible for distributing the special education funds in a manner that is consistent with the educational programs and needs of the pupils within the SELPA (Legislative Analyst's Office, 2000). For fiscal year 2001-2002, the Governor's budget provides a total of approximately $260 million for special education, excluding one-time funding and funding for state special schools. Federal special education funds for fiscal year 2001-2002 are stated at $124.6 million (California Department of Education, 2001).
Various school districts have claimed in litigation that the state mandated their special education programs, yet failed to adequately fund them. Their lawsuits, known as the Riverside and Long Beach cases, commenced in 1980 and settled late last year. The settlement provides for an increase in special education funding of $100 million annually, beginning this year, plus payments of $25 million each year for ten years and a one-time payment of $270 million. Research has not revealed that there is a standing mandates claim procedure for school districts to seek reimbursement for special education costs that exceed the state categorical allocation, however, so LEA responsibility to deliver services regardless of cost remains the same. AB 3632 has relieved LEAs from the responsibility of providing some of the more costly mental health services to special education students (residential placements, for example), however, by shifting the responsibility to provide and fund such services onto county mental health departments.
California's Mental Health Finance System
The California mental health budget consists of the intersection and overlap of various funding schemes. Generally, the mental health budget is comprised of "realignment" funds that are dedicated funds based on a portion of the state sales tax, and federal funds that are intended for particular programs and services (Medicare and Medicaid, for example) (Children's Advocacy Institute, 2000). Funds allocated for pilot projects and grants may provide individual counties the opportunity to provide greater services. Pilot project funds include state allocations to counties to establish systems of care, described supra. Counties also receive a categorical allocation to provide AB 3632 services. Finally, private insurance provides a means for children to access mental health services, but does not relieve county mental health departments from their responsibility to deliver services required under AB 3632.
The Medicaid program is the third largest source of health insurance in the United States, after employer-based health insurance and Medicare (U.S. Department of Health and Human Services, 2000). Medi-Cal is California's Medicaid program. Certain individuals are automatically entitled to Medi-Cal coverage, including children whose family income is below a certain level. As a condition of receiving federal Medicaid funds, states are required to follow Medicaid requirements. For example, states are required to provide statutory "mandatory services," which include Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) for individuals under age 21. EPSDT is, in part, a mental health entitlement program that requires states to provide diagnostic and treatment services to "correct or ameliorate defects and physical and mental illnesses and conditions covered by the screening service, whether or not such services are covered under the state plan." 42 U.S.C. § 1396d(r)(5). This is a broad entitlement that has been interpreted to require wraparound services, described supra, which may include behavior management, crisis intervention, family counseling, in-home therapy, therapeutic staff support, and more intensive auxiliary services (Bird, 1998). These services may be required by students in special education who require such mental health services to benefit from their special education program.
Medicaid populations have been observed as having a higher prevalence of children with SED than privately insured populations (U.S. Department of Health and Human Services, 2000). Therefore, observing mental health care access by this population is key to understanding the current status of mental health care delivery to emotionally disturbed youth in California. The following data provides a picture of California's Medicaid population:
It is not difficult to infer from the preceding data that there is a huge divide between the number of children who may require mental health services from Medicaid and the number actually accessing those services.
Children who do not qualify for Medi-Cal may be able to enroll in California's Healthy Families Program, established for those children whose family incomes are too high to qualify for Medi-Cal, but whose families cannot afford private insurance. For emotionally disturbed children, Healthy Families provides an additional benefit that matches the scope of Medi-Cal specialty mental health services, but only to the extent that counties can afford to provide these services. Current literature indicates that approximately 320,000 children are enrolled in Healthy Families, estimated as half of those eligible (Children's Advocacy Institute, 2000).
Private insurance is another source of funding for mental health services for children. However, the availability of private insurance is not to be confused with specific mental health entitlements under federal and state programs, as described above. For instance, a child who is receiving special education and related services is still entitled to receive mental health services that are required for the student to benefit from her special education program, regardless of whether she is Medi-Cal eligible, or enrolled in the Healthy Families program, or if she is insured through a parent's employer-based health plan.
The thread running through each of these mental health funding mechanisms is a special education/mental health mandate: children in special education are entitled to mental health services that are required in order to benefit from a special education program. While mental health services can be delivered outside of the educational context, the fact is that the vast majority of children who are recognized as having a mental disorder and actually receive treatment are recognized and treated in school. Further, offering services in schools has been found to improve treatment access. (U.S. Department of Health and Human Services, 1999). Each of the funding mechanisms identified above allow for the provision of the types of mental health services that may be required for a child to benefit from special education.
County mental health departments and LEAs can serve a greater number of children and provide a greater array of services through these various funding mechanisms with better coordination and planning. Personnel should be more intensively trained to recognize how services can be characterized to maximize already limited funding. The Surgeon General recently observed that agencies charged with providing services to children "lack the expertise to recognize, refer, or treat mental health problems that trigger mandated services." (U.S. Department of Health and Human Services, 1999). As a result, services that could be paid for through Medicaid or other mechanisms are paid for out of pocket by schools, child welfare, or juvenile justice.
Another recent report reinforces the Surgeon General's findings as to the poor state of mental health among California's children. It found that mental health departments were not coordinating services with schools, probation, dependency, substance abuse programs, and other services that may serve the SED population (Protection and Advocacy, Inc., 2000). Despite the fact that SOC funding has been made available to address this fragmented service system, federal Medicaid law requires that EPSDT services be coordinated with special education, and AB 3632 requires coordination between county mental health departments and schools, parents and children still report that mental health care is difficult to access before a child ends up in the probation system or is in crisis. (Protection and Advocacy, Inc., 2000).
California's Report Card on Serving the Mental Health Needs of Students in Special Education
DREDF activities in support of investigating the status of mental health care delivery to children involved as much data compilation as interviews and surveys of parents and agency administrators. Data collection began at the state level, and involved investigating current reporting systems and analyzing what data gathered actually represented. This latter activity involved interviews and correspondence with agency personnel, assisting researchers in finding meaning in the numbers presented. From these interviews and exchanges, further information regarding data collection practices, areas of concern in the administration of children's mental health services, and recommendations for systems change were elicited.
Research at the state agency level began with the following questions:
The two state agencies that were the focus of this study were the DMH and CDE, although other agencies are responsible for providing necessary mental health services to children and fulfilling the educational mandates of IDEA (California Youth Authority, for example).
The DMH uses a computerized data collection system called the Client and Services Information System, or CSI. Under this system, county mental health departments are required to create a Client Record upon first contact with a client. Service records are entered into the system as services occur. Periodic records, which contain data such as living arrangements, are entered upon admission, annually, and upon the client's discharge.
The CDE, Special Education division also uses a computerized data collection system known as CASEMIS, or California Special Education Management Information System. Through this system, school districts report to SELPAs, and SELPAs report to the CDE. The CASEMIS system collects, among other data, information regarding the designated instruction or service provided to special education students. For students who require mental health services, the CASEMIS system provides the following categories for documenting these services: group counseling, individual counseling, and psychological services. CASEMIS only collects data on special education students, and sources at the CDE have stated that whatever services are documented in their system are services provided pursuant to an IEP.
Data collection practices regarding mental health services delivered outside of the AB 3632 referral process, i.e., services delivered through Medi-Cal/EPSDT or Healthy Families, or through private insurance, cannot not be presented as research had to be limited in this phase of the project. Research did reveal in the investigation of mental health funding mechanisms that approximately 95,000 children accessed mental health services through Medi-Cal during 1993 (Children's Advocacy Institute, 2000).
The two data collection systems described above do not produce data that indicate how many children have been assessed for mental health services, how often assessments take place, nor what services are included in assessments conducted. Sources at both the CDE and DMH confirmed that this data is not collected at the state level, although it may be possible to obtain this data locally. The failure of the state to collect this data is significant with regard to its responsibility to monitor compliance with both mental health and special education mandates. It is not possible to know whether children with mental health needs are being effectively served in the existing systems without data regarding the numbers of children entering into the system, how their needs are addressed on an ongoing basis, and what services are being made available based on assessments.
Mental Health Services Data
The CDE and DMH data collection systems provide the following numbers regarding students diagnosed with SED, or receiving certain mental health services:
Children w/SED in Special Education
(as of Dec. 1999)
(as of Dec. 1999)
(as of Dec. 1999)
Children with SED receiving mental health services in special education
(Source: California Department of Education)
Sources at the CDE identify the children who received individual or group counseling and psychological services as special education students, whose IEPs require such services. According to the data above, 23,266 students in special education received individual or group counseling or psychological services pursuant to their IEPs. CDE data at the state level does not offer a breakdown, by disability, of students receiving these services. The CDE also provides the number of students identified with SED in special education; this number, 21,325, is smaller than the total receiving individual or group counseling or psychological services, which may mean that children other than those recognized as emotionally disturbed are receiving these particular mental health services. The students identified with SED are likely included in the total number of students receiving the services specified above, but CDE sources were unable to verify to what extent these students are represented in the mental health services breakdown above. Finally, the number of students identified as SED by the CDE by no means represents the total number of students who may require or are receiving mental health services, although it is the only data apart from the prevalence estimates discussed supra that may demonstrate the number of children most likely to require mental health services.
The DMH identifies 22,633 children who received AB 3632 services in 1999 (California Department of Mental Health, 1999). Of these 22,633 AB 3632 clients, there is no available breakdown of services provided, except in the case of out-of-home placements. The total number of students in out-of-home placements under AB 3632 in 1999 was 1,033 (Department of Mental Health, 1999). Research also revealed that of the 1,033 children in out-of-home placements, 406 received additional mental health services, although no sources were revealed that identify the specific services provided. Sources at the DMH and CDE have indicated that information regarding specific services, who provides these services, how frequently services are provided, and the overall duration of services is either not collected or not available in aggregate form at the state level, for either students in the general special education population or in out-of-home placements.
California's failure to systematically track the mental health care needs of the special education population has been noted by the U.S. Department of Education, Office of Special Education and Rehabilitative Services (OSEP). The CDE has been the subject of special scrutiny by OSEP for longstanding noncompliance with federal special education law. Specifically, OSEP cited CDE for failure to monitor referrals to county mental health departments under AB 3632 and failure to provide needed psychological services to special education (OSEP, 2000). OSEP found that "school districts have no systemic way to track referrals to Community Mental Health, or any way of providing psychological counseling services directly if Community Mental Health closes a case before completing the evaluation or determines that a child is not eligible for mental health services." (OSEP, 2000). OSEP also observed that "even if Community Mental Health does provide services to address a child's need for psychological counseling as a related service, these services are not documented in the child's IEP, the school districts that OSEP visited did not have any systemic way to monitor services provided by Community Mental Health, and the school districts did not have any way of providing psychological counseling services directly if Community Mental Health terminated services to the child."
OSEP's observations regarding California's failure to monitor the delivery of children's mental health services and failure to ensure that at least local agencies monitor their own activities and responsibilities only echoed what researchers in this project have determined: no agency, either state or local, is collecting meaningful data regarding children in California receiving mental health services, or who require mental health services but are not receiving them.
Parent/Student Survey and Interview Data
Researchers conducted a survey of parents and parent interviews in order to determine how mental health services are actually delivered in California. The questionnaire that guided researchers is attached as Appendix E. The following general conclusions could be derived from parent responses:
Some sample parent and child experiences are illustrated below:
"John" is a special education student diagnosed as having a specific learning disability. His parent had requested AB 3632 services for several years, with no response from the LEA. John had to be removed from school because his depression had made him suicidal. The LEA finally activated the AB 3632 referral, and the initial assessment was completed in a timely manner. A day treatment program was prescribed, but John had to wait two months before he could enter the program. John participated in this program for three years. John's parent reports that he received adequate counseling services but the educational program was poor.
"Rafael" exhibited signs of depression, phobias, and emotional instability. His parents convened an IEP meeting, but were told by the school principal that "there was nothing they could do" as the student's problems "were of a psychological nature." Rafael eventually had to be removed from his home and hospitalized. It was only at this point that the LEA made a referral to county mental health. Rafael's parents were told by the county mental health assessor that there was a waiting list and that they should be patient, as there were many others ahead of them. Parents hired an attorney and were able to obtain an assessment shortly thereafter. In the meantime, parents had to place Rafael into an emergency residential placement that was out of state. After the assessment, the LEA and county mental health convened the follow-up IEP meeting and suggested various local placement options, at facilities that had no openings or refused to take Rafael for other reasons. Rafael's parents had to pay for the out-of-state placement for five months before a local placement became available. Once Rafael was placed locally, the LEA and county mental health disputed which agency was ultimately responsible for paying for the placement, during which time Rafael's parents were forced to pay. This dispute has not yet been resolved, but Rafael's parents report he is making progress.
"Curtis" was diagnosed with fetal alcohol syndrome and Attention Deficit Hyperactivity Disorder (ADHD) at age four, but his LEA did not provide him an IEP until he reached kindergarten. Curtis was placed in a Special Day Class for two and a half years and began exhibiting severe behavior problems. He was never offered a behavior plan. The LEA finally referred him to county mental health at age eight, when he began exhibiting violent tendencies. Curtis' parent was offered two placements. At the first placement, Curtis ran away. His parent discovered this when Curtis called her from a stranger's house. When parent called Curtis' school, she was told her son was outside playing basketball. At the second placement, Curtis fared better, and has been in residential placement for six years.
"Sylvia" was originally diagnosed with Attention Deficit Disorder (ADD) at nine years of age, then began exhibiting suicidal tendencies and was subsequently diagnosed as emotionally disturbed. Sylvia is currently taking medications, which are difficult for her to take during school hours. Sylvia's parent asked for assistance with this at her school but never received an adequate response. No behavioral plan was implemented to address Sylvia's needs. Sylvia's parent contacted DREDF to seek assistance, and DREDF's parent advocates instructed her to request an AB 3632 referral. Parent did so, and obtained a letter from a private mental health service provider that verified that Sylvia was emotionally disturbed. Sylvia's school responded by stating Sylvia would be provided six months of "counseling" with their intern psychologist, weekly for one hour. Only after this course of treatment would the school revisit parent's request. The intern psychologist has been absent for 50% of the counseling time that was to be provided to Sylvia. Parent's requests for other services have been denied to this day. Parent's struggle with this LEA has spanned the course of two years.
"Ahmad" at age thirteen awoke on his first day of school, exhibiting suicidal tendencies. He was subsequently admitted to a hospital and diagnosed with thought disorder. A week later, Ahmad returned to school, but stated he felt unsafe. He returned to the hospital, and his doctor recommended he receive an IEP. The school went to the hospital to conduct the IEP and made an AB 3632 referral. The county mental health representative did not appear at the follow-up IEP meeting, but the school district referred to an appropriate day treatment facility and followed up on the placement. Ahmad's parent was told that it would take thirty days to assign a county mental health caseworker. Ahmad is doing well in his current placement, but whenever Ahmad's parents seek assistance from county mental health, it takes up to one month to receive a response, and their requests are always referred out.
"Jason" is a seven-year-old boy who was unable to function in a regular public school setting. Jason's parent took him out of school and placed him in a private school where he continued to experience great social and academic difficulties. Jason's parent tried several times to obtain an assessment through his school. Parent was simply told that her child was "very bright, just weird like Bill Gates" and that Jason would "grow up to be a tech wizard." Jason's parent contacted DREDF for assistance. DREDF's parent advocates advised parent to seek an independent assessment from a neuropsychologist, and advised her of her right to seek reimbursement for the expense of the evaluation from the LEA. Jason's parent followed this advice, and Jason was subsequently diagnosed with Asperger Syndrome, Non-Verbal Learning Disorder, Sensory Integration Dysfunction and Depression. An IEP meeting was convened and Jason began to receive designated instructional services, including Speech and Language Therapy and Occupational Training, and was referred to county mental health for an AB 3632 assessment. The assessment was completed within 30 days, and the counseling that was prescribed was not available. The LEA agreed to contract with an outside provider for these counseling services. Jason has been making positive progress.
The foregoing examples of real world experiences illustrate on the common problems experienced by parents in seeking mental health care for their children, and the administrative complexities that stand in the way of children receiving the mental health care to which they are entitled. While some experiences result in positive outcomes, children's lives are placed at risk while LEAs and county mental health departments struggle with fiscal and resource issues, or even worse, fail to recognize their responsibilities to seek out and treat children who require services.
AB 3632 Caselaw and Trends
The conclusions that can be drawn from the anecdotal data gathered from parent interviews and surveys can also be derived from a survey of formal complaints filed in the past few years. Interagency complaints related to the delivery of AB 3632 services are resolved by joint review by the DMH and CDE. Parental complaints against districts for failing to meet the special education needs of their children can also be brought before the Special Education Hearing Office (SEHO).
Sources at the CDE, which houses the Complaints Management and Mediation Unit (CMM) in the Special Education Division, identify two major areas of complaint related to mental health services: failure to respond to AB 3632 referrals within the required timelines, and failure to implement an IEP that requires mental health services. This unit processes approximately 20 to 30 complaints each year, involving various agencies, including the DMH. Complaints are generally initiated by a parent, an advocate, an attorney, or other interested parties, on behalf of the child. (Parents are often unaware that there is a complaint process they can pursue, which may account for the low number of complaints received.)
Upon receipt of a written complaint, the CMM is required to complete a report regarding the complaint within 60 days. Once investigation begins, local agencies are provided an informal period of 10 days within which to reach a local resolution. The state investigation continues if a local resolution is not reached. CDE sources have explained that local resolutions are rare, as once the complaint process reaches the state level, relationships are broken. CMM concludes its investigation with a written report that may find non-compliance with the laws, and if so, will contain a timeline and prescribe corrective actions. The CDE contains five Focused Monitoring and Technical Assistance Units (FMTAs), and these units are responsible for monitoring compliance with any corrective actions. Research in this phase of the project was not able to identify how this process plays out in real life, but it would be instructive to seek out parents who have gone through this complaint process to determine the adequacy of the state's investigations and monitoring of corrective actions.
A survey of SEHO complaints over the past four years affirms the conclusions that can be drawn from the parent interviews and surveys: parents are not informed of the availability of mental health services for their children, requests for mental health services are ignored, there are long delays between the initial request for services and their delivery, agencies do not have mechanisms in place for determining their responsibilities for providing services, and services themselves are either unavailable, inadequate, or just not delivered. Specifically, the following trends are revealed:
California is Not Monitoring the Delivery of Mental Health Services to Children
As noted above, current reporting practices impede effective monitoring of the delivery of mental health services to children and fail to ensure compliance with federal and state special education and health mandates. This project attempted to provide a complete picture of the demand for mental health services with a particular focus on the special education context. Through research, researchers intended to provide information regarding the services available and the numbers of students effectively served. Currently, research has only been able to reveal the statistics presented above, which do not provide meaningful information about children's mental health service delivery in California. Research has not been able to answer many of the questions this project originally set out to address, and as research continued, other questions that would assist in determining the effectiveness of our children's mental health delivery systems arose, such as:
These questions cannot be answered with the data available through the data collection methods described above, but point to what data should be collected in order to effectively monitor local compliance with federal and state special education and mental health mandates.
Interagency Collaboration is Weak
Under AB 3632 and the SOC model, agencies involved in the delivery of services to children are required to enter into agreements to facilitate coordinated service delivery. Research here demonstrates that agencies that share the common responsibility to provide mental health care and educational opportunities to youth are not coordinating their services, and often the availability of mental health services will depend on the "door of entry." The SOC especially was intended to eliminate the problem of fragmented or isolated service delivery, but research regarding the operation of the SOC in California tells a different story. While interested agencies are required to enter into interagency agreements to facilitate the delivery of mental health services to at-risk youth "turf wars" continue, primarily due to limited funding or agencies' failure to take advantage of funding sources available for certain services. The irony behind this fight for resources is that without better coordination, services may be unnecessarily duplicated.
Of perhaps more grave concern is the fact that agencies are actively sabotaging the opportunities at-risk youth have at obtaining the treatment and educational placements to which they are entitled: research indicates that in the interest of saving money, county mental health departments are being counseled to encourage juvenile justice judges to place youth who qualify for special education on probation rather than referring the child for AB 3632 services. The rationale: placing a child on probation only involves the resources of juvenile justice, when AB 3632 services involve the resources of schools, mental health, and juvenile justice. There is no sanction under federal or California law that allows for this kind of reasoning to interfere with the right to a free and appropriate education and mental health treatment in the least restrictive environment.
Local Education Agencies are "Passing the Buck"
Local education agencies are required by federal special education law to provide whatever mental health services may be required for a child to benefit from special education. AB 3632 places the responsibility for delivering special education-related mental health services on county mental health departments once an assessment has been made and services are deemed appropriate, but the LEA remains responsible for ensuring that services are ultimately provided. Further, when there are disagreements between county mental health and the LEA regarding the provision of services (i.e., when county mental health determines the child does not need mental health services through the county) the LEA is still responsible for ensuring a child receives whatever related services will allow her to benefit from her educational program. AB 3632 in California does not shift the responsibility to provide for special education students' mental health needs away from the LEA, although the 3632 referral mechanism is being treated this way. When interagency disagreement arises, research indicates that children simply go without services, or the process is drawn out through a complaint process that can take years. In the meantime, children drop out of school, get arrested, or simply end up in unnecessarily restrictive placements.
Available Funding is Not Maximized
Despite the availability of various funding schemes for children's mental health services, the numbers of children who actually receive services, as presented earlier, are low. The tangled web of various funding streams presents challenges to agencies that historically have been accustomed to dealing with certain populations, covered by specific funds, for only certain services. Furthermore, differing agency philosophies have had to change with the introduction of the SOC and AB 3632. The young clients served under these programs come with specific mental health entitlements that require knowledge of federal and state special education laws, and are forcing agencies to coordinate within themselves with regard to available funding, and among agencies to avoid redundancy. These agencies are currently operating on the instinct to protect resources and territory, but in this fearful struggle, agencies are missing opportunities to maximize available funding to deliver mandated services. Adding to this picture of underutilization is the fact that the number of children who are entitled to Medi-Cal/EPSDT services, apart from their educational mental health entitlements through special education laws, is higher than the number of children actually receiving these services. Parents are simply not being told, according to research, that mental health services are available to their children.
The fact that agencies are required to navigate through such a tangled web of funding streams in order to serve their clients is not unnoticed. Even with the maximum utilization of available funds, it is outrageous that the children's mental health budget should be as complex as it is. Considering that mental health care to many children, especially those at risk of SED, is usually going to be an entitlement, California should be facilitating access to these entitlements, rather than maintaining the existing barriers. Agencies would be helped by a major overhaul in our mental health funding models, in favor of a more flexible funding scheme that allows various funds to be pooled for needed services. Parents and children would be helped by greater outreach regarding their mental health entitlements and the programs available to them through federal and state health care plans.
IMPACT/OUTCOMES OF GRANT PROGRAM AND ACTIVITIES?
As a result of the research conducted for this project, DREDF is able to offer the following recommendations:
Specific local barriers to the full integration of children's mental health service delivery under the System of Care should be identified.
Despite the existence of laws and regulations meant to facilitate the delivery of mental health services in a seamless, coordinated fashion, children are not receiving needed services and local agencies are having difficulty moving toward the goals of the SOC. While there are larger, systemic problems that have been identified as barriers in this research (restrictive state and federal funding, for example), research has also revealed that the availability of services, compliance with federal and state procedures for referral and assessment, and relative coordination of different agencies' services vary from locale to locale. Therefore, investigating the cultures of different communities and the systems that have developed in these communities would be essential to understanding how the SOC can be implemented, and how children in these communities can effectively obtain services.
Fiscal barriers to integrating children's mental health services among the children's mental health service agencies should be identified.
Research to date has been able to identify the major funding mechanisms for children's mental health services in California, as well as the problems faced by local agencies in accessing these funds while delivering mandated services. Many questions regarding the state of funding are unanswered, such as whether or not, even if local agencies could effectively coordinate services and maximize funding opportunities, would there ultimately be enough funding to provide every child the mental health services required? What exactly are the barriers to identifying the most effective funding sources for certain services? Are LEAs aware of the availability of Medi-Cal/EPSDT services as a means of providing related services to special education students? Identifying the process by which individual counties and LEAs manage their available funding can help identify ways in which the current funding system can be revised, to allow for effective and complete service delivery.
Current funding schemes should be revisited, and the potential for pooling funds among agencies should be investigated.
Related to identifying the existing fiscal barriers is the first step towards determining what different funding models would be effective for seamless service delivery and provision of the full array of services for children's mental health needs. A survey of different funding systems across the nation would assist in determining what models might work for California.
Greater outreach and training should be provided to parents, school administrators, teachers, mental health service providers, juvenile justice personnel and "high-risk" neighborhoods regarding the availability of mental health services through the IEP, AB 3632 referral, Medi-Cal/EPSDT and Healthy Families.
Parent surveys, interviews, discussions with parent advocates, the survey of complaints, and a review of current research has demonstrated that parents and other key players in children's mental health simply do not know what is available. Even when parents seek services, schools, mental health agencies, and other service agencies do not recognize that parents are requesting services to which their children are entitled, and which are funded through various federal and state mechanisms. While there are local barriers that will still prevent children from receiving the services they require, such as a lack of trained, qualified personnel to assess and deliver services or waiting lists to receive services, at a minimum, parents and agencies should be fully aware of the availability of services and the obligation to provide mental health services.
Cross-training should be taking place among agency personnel regarding the mandates and services of other children's service agencies, and procedures for coordinating services.
The most pressing barrier to successful implementation of the SOC is the failure to cross-train agency personnel regarding the services, mandates, and procedures of other children's service agencies. While interagency agreements are required, research reveals that agencies do not operate in a coordinated fashion and engage in "turf wars" to protect resources and funding. Areas in which coordination are necessary should be identified and personnel responsible for carrying out tasks related to providing mental health services to children should be trained as to each other's responsibilities and the objectives and requirements, as defined by federal and state law, of service delivery.
Local interagency agreements should be collected from individual counties and local education agencies.
Neither the CDE nor the DMH collect local interagency agreements and the CDE relies on representations in local plan applications in finding a SELPA in compliance with the requirement of having an interagency agreement in effect. The DMH similarly does not ever see local interagency agreements unless a county seeks guidance on the contents of their agreement. Further, assuming agreements exist, it is unknown whether these agreements meet the requirements set forth in the California Code of Regulations. It would be essential to effective monitoring to have these agreements on file, and to monitor the requirement that these agreements be revisited on a periodic basis, as required by law. Ensuring that this re-evaluation of agreements takes place will facilitate analysis of local delivery systems and identify problem areas, thus helping counties and LEAs move closer to integrated service delivery.
The Wraparound Pilot Project should be analyzed and its strengths, weaknesses, sustainability, and best practices should be identified.
The Wraparound Pilot Project, due to end in 2003, recognizes that the artificial barriers between a child's school life, home life, and community life also present barriers to effective mental health treatment. The SOC has only recently been implemented statewide, and it would be a natural occurrence for wraparound services to become standard, as well. The sooner the problems and best practices in the wraparound programs that have been implemented are identified, the sooner wraparound can be successfully implemented on a larger scale.
Data collection practices at the state level should be revised to allow for monitoring of the frequency of assessments, the content of IEPs, the provision of specific mental health services pursuant to IEPs, timeliness of referrals and assessments, and fidelity to the frequency/duration of services specified.
The only information regarding the realities of assessments, the creation of IEPs, the provision of mental health services, and adherence to timelines for referral and assessment is available from anecdotal evidence and a survey of complaints against LEAs and mental health departments. The data collection systems in existence do not track the information that is necessary to ensure true compliance with federal and state laws. Even if this information is available at the county level, the state cannot be relieved of its responsibility to monitor the operations of its local agencies.
Juvenile justice personnel should be trained regarding special education and mental health mandates.
Once a child enters the juvenile justice system, the chances of that child receiving the education and mental health services to which she is entitled are almost entirely diminished. Only with training and educating juvenile justice personnel regarding the mandates of the IDEA, California special education laws, and the availability of mental health services can we save children from unnecessary incarceration and provide them the opportunity they need to succeed in society.
Compliance with the newly enacted California Rules of Court requiring juvenile courts to be guided by federal and state special education and mental health mandates should be monitored.
Juvenile courts should be monitored to ensure that they comply with the recently enacted California Rules of Court, discussed supra, that require that these courts be guided by federal and state special education mandates, and take into account the mental health needs of its wards.
CURRENT STATUS OF PROGRAM
DREDF's partnership with the California Endowment will continue with a program that will build on the research and recommendations from this project. DREDF will be examining the specific needs of parents and children and begin to develop upon the recommendations herein, by convening a high-level, one-day, invitation-only symposium. Potential attendees will include:
DREDF also intends to include representatives from the California
Department of Education, the California Department of Mental Health, the Little Hoover Commission, and the California Endowment. Representatives from organizations of mental health professionals and administrators, parent and child advocate organizations, and other advocacy organizations may also be invited. A list of these organizations is attached as Appendix F.
The symposium will address the following issues:
The results of the symposium, including panel discussions, presentations, and
briefing materials, and the next steps for systems change will be published on the DREDF website, and the availability of these materials will be publicized to the eleven federally-designated Parent Training and Information Centers in California.
Beyond this symposium, DREDF is committed to further in-depth examination and amelioration of the problems faced by children seeking mental health services in California. Development and implementation of the recommendations contained herein, as well as recommendations derived from the symposium, may be the subject of a future proposal.
Hendrickson, Jo. M. (1995). School-Based Comprehensive Services: An Example of Interagency Collaboration. In Paul Adams and Kristine Nelson (Eds.) Reinventing Human Services: Community and Family Centered Practice (pp. 145-162). New York, NY: Aldine De Gruyter.
Duncan, Brent (1996). Providing Quality Services to Emotionally Disturbed Students and Their Families in California: Recommended Program Standards for Community-Based Programs. Sacramento, CA: Resources in Special Education, California Department of Education.
Jordan, Pat (Ed.) (1998). A Guide to Implementing Children's Systems of Care in California. Sacramento, CA: Cathie Wright Technical Assistance Center. Available at http://www.cwtac.org/soc/index.html.
California Mental Health Planning Council (2001). Mental Health Master Plan (Draft). Sacramento, CA: California Mental Health Planning Council.
U.S. Department of Health and Human Services (1999). Mental Health: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health. Available at http://www.surgeongeneral.gov/library/mentalhealth.
U.S. Department of Education (2000). To Assure the Free Appropriate Education of All Children with Disabilities: Twenty-Second Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act. Washington, D.C.: U.S. Department of Education, Office of Special Education Programs.
Bingham, Carol (1997). Mental Health Services for Special Education Pupils: A Report to the State Department of Mental Health and the California Department of Education. Sacramento, CA: California Department of Education and California Department of Mental Health.
Burrell, Sue (2000). Special Education and the Juvenile Justice System. In Juvenile Justice Bulletin, July 2000. Washington, D.C.: U.S. Department of Justice, Office of Justice Programs, Office of Juvenile Justice and Delinquency Prevention.
Coalition for Juvenile Justice (2000). Handle With Care: Serving the Mental Health Needs of Young Offenders. Washington, D.C.: Coalition for Juvenile Justice.
California Department of Education (2001). Management Bulletin 01-01: Governor's Budget for Fiscal Year 2001-2002. Sacramento, CA: California Department of Education.
Legislative Analyst's Office (2000). Special Education Facilities Funding Report. Sacramento, CA: Legislative Analyst's Office. Available at http://www.lao.gov/2000_reports/010399_special_ed_facilities.html.
California Department of Education, Special Education Division (2001). Governor's 2001-2002 Budget Summary for Special Education. Sacramento, CA: California Department of Education, Special Education Division. Available at http://www.cde.ca.gov/spbranch/sed/legsup/s0110.htm.
U.S. Department of Health and Human Services (2000). A Profile of Medicaid: Chartbook 2000. Washington, D.C.: U.S. Department of Health and Human Services, Health Care Financing Administration.
Children's Advocacy Institute (2000). California Children's Budget 2000-2001. San Diego, CA: Children's Advocacy Institute, University of San Diego School of Law. Available at http://www.acusd.edu/childrensissues/toc/title.shtml.
Bird, Melinda (1998). Medi-Cal EPSDT Services For Children With Mental Health Needs: Summary and Background. Los Angeles, CA: Protection and Advocacy, Inc.
Protection and Advocacy, Inc. (2000). Managing Mental Health Care: A Report on California's Medi-Cal Mental Health System, 1997-1999. Sacramento, CA: Protection and Advocacy, Inc. Available at http://www.pai-ca.org/pubs/507101.htm.
U.S. Department of Education, Office of Special Education and Rehabilitative Services (2000). Letter to Dr. Alice Parker, Assistant Superintendent of Public Instruction, California State Department of Education, June 21, 2000. Available at http://www.cde.ca.gov.spbranch/sed/osep0621.htm.
California Department of Mental Health (1999). 1999 Government Code Chapter 26.5 Trends and Out-Of-Home Care Data Report. Sacramento, CA: California Department of Mental Health.
A Formal and Informal Partners in the System of Care
California Mental Health Master Plan (Draft)
California Mental Health Planning Council, 2001.
B Recommended Program Standards for Systems of Care and Quality Indicators
FromProviding Quality Services to Emotionally Disturbed Students and their Families in California: Recommended Program Standards for Community-Based Programs
C Prevalence Rates and Unmet Need Estimate for Ages 0-17 by County
DREDF Parent Questionnaire
F Organization List