Long-Range Obiectives

BACKGROUND
Activities aimed at the prevention of developmental disabilities have been a high priority of the Department. An Office of Prevention was established in 1984. In 1987 the Department was awarded a grant from the federal Department of Education and appointed the lead agency for coordinating activities under the provisions of Public Law 99-457 (P.L. 99-457)[1]. In the LRP 88-93, a separate goal for early intervention (Goal 7) was established to coordinate the activities in this area.
1. Part H of P. L. 99-457 is the early intervention part of the Education of the Handicapped Act Amendments of 1986.

Prevention and amelioration of developmental disabilities remain top priorities of the Department and the Health and Welfare Agency. The incidence of developmental disabilities and birth defects remains unnecessarily high, but could be significantly reduced through effective prevention and early intervention measures. The cost of preventable developmental disabilities to the citizens of California in dollars, and more importantly, in human terms, makes prevention an effort the Department cannot afford to deny or delay.

This LRP incorporates a number of changes in the area of prevention and early intervention. Goal 6 and Goal 7 of the LRP 88-93 have been combined into a single goal that consolidates prevention activities with several early intervention objectives. The following objectives from both Goal 6 and Goal 7 in the LRP 88-93 have been met and incorporated into the prevention service system:

1. Identification and provision of case management services to high-risk infants has become an routine activity throughout the regional center system.
2. All clients entering the system now are screened for preventable handicaps and provided genetic diagnosis and counseling. These services are also extended to persons in the conununity who are at risk of parenting a child with a developmental disability.
3. Interagency agreements in the area of prevention have been executed and implemented with California Childrens' Services and with the Genetic Disease Branch in the Department of Health Services.
4. A standard protocol for review of regional center prevention programs has been developed, and is now used on an ongoing basis to identify issues in need of attention.
5. A new data system for all infants served by regional centers has been developed, field tested and prepared for automation in Fiscal Year 1990-91.
6. An assessment of the unmet early intervention service needs of infants, toddlers and their families has been completed. This assessment has resulted in disbursement of federal funds as proposed in the Local Planning and Needs Assessment Report and Direct Service Expenditure Plans.
7. Six studies were completed which researched and analyzed the program and fiscal implications of participating in Part H of P.L. 99-457.
8. Interagency agreements in the area of early intervention have been established between all departments participating in Part H of P.L. 99-457.

These objectives are now complete, and will therefore be deleted from this plan. Two new objectives will be added in the area of early intervention. The seven objectives that remain as a result of this reorganization reflect the Department's prevention and early intervention priorities.

Prevention
Prevention activities include primary, secondary, and tertiary services. Primary prevention services attempt to eliminate causes of handicaps and, thus, reduce their prevalence in the community. Secondary prevention services cure or lessen the full development of a condition after it has been recognized. Tertiary prevention services seek to minimize long term disabilities or lessen some of their effects.

The Department's prevention efforts are coordinated through the Office of Prevention. Each of the three forms of prevention services is currently represented among the Office's activities. 'ne Office also helps to support the planning, implementation, and delivery of prevention services.

A major initiative over the past several years has been to establish prevention teams to plan and deliver specific prevention services at each regional center. Each regional center developed a prevention plan that specified the primary focus of its prevention efforts. Prevention coordinators and high-risk-infant case managers were then hired by all regional centers. These staff are actively implementing their regional centers' prevention plans.

Genetic diagnostic and counseling services, the third component of the staffing for prevention, are now provided by genetic associate counselors working with medical staff at regional centers, or through interagency agreements or contracts with genetic centers or university medical centers.

Service to high-risk infants is another major component of the prevention program. Tle regional centers are serving increasing numbers of high-risk infants. Chart 6.1 shows the increase in the number of high-risk infants receiving services between June 1985 and June 1989, as well as the number of cases anticipated by November 1990.

In addition to high-risk infants, over 6,000 people at risk of having a child with developmental disabilities annually receive genetic services from the regional centers. Chart 6.2 displays the reasons why these persons received genetic services. The most typical consumers of genetic services are families who, due to advanced maternal age, seek information that will help them determine whether to undertake or continue a pregnancy.

The Department recognizes that prevention resources exist throughout the service system, and adopts this goal to ensure the coordination of existing resources, both inside and outside the Department. The regional center prevention programs are an essential component of this statewide, multi-agency coordination effort. Those programs have made significant progress in educating the primary infant care professionals who first advise parents about the real choices and possibilities facing them and their infants.

Early Intervention Services for High-Risk Infants
The Department recognizes that the best measure of successful prevention efforts is a decreasing proportion of young children within the corm-nunity who have developmental disabilities. However, because of demographic trends, a decrease in the actual number of children with developmental disabilities cannot be expected within the foreseeable future, regardless of the impact of prevention programs. The California population is growing and, consistent with growth in the general population, a corresponding increase is predicted in the number of children with developmental disabilities.

Other factors operate to increase the number of individuals receiving service as well. Advanced technology now saves many medically fragile babies who formerly might not have survived. High rates of inmiigration bring to our state families who are unfamiliar with, or who have not had access to, prevention services in their countries of origin. Increased concern over the developmental consequences of substance abuse has also extended the size of the population to which genetic and early intervention services are offered. Finally, we are faced with the possibility that increases in the number of pediatric AIDS cases will be reflected in growth in the number of children with developmental delay or disability.

Early intervention services to at-risk and developmentally delayed infants and their parents can reduce both the prevalence of developmental disabilities among those infants and the severity of their disabilities. A recent nationwide study (Infant Health and Development Program, 1990) demonstrates that intervention in the first three years of life for premature, low birth weight infants significantly decreases the likelihood of mental retardation, behavioral problems, and learning disabilities. In this study, children not enrolled in the early intervention program were three times as likely as those enrolled to have IQ scores in the mental retardation range. Those not enrolled in early intervention programs also were nearly twice as likely to have behavioral problems. Early intervention programs also have been found beneficial for children at high risk for learning disabilities (Ramey and Campbell, 1987). Ramey and Campbell's project involved intensive educational intervention with children who were at risk for learning disabilities because of low family income, low parental 10, or because they had a sister or brother with mental retardation. Children receiving the intensive educational intervention had higher IQ scores than those children who didn't receive the intensive intervention.

In sum, intensive developmental intervention, based on periodic assessment of infant and family needs, facilitates the growth and development of many at-risk or delayed children so much that they cease to be at risk of becoming developmentally disabled and instead achieve "normal" rates of growth. Such persons would no longer need regional center services. Some at-risk infants do become developmentally disabled. For them, early intervention services often result in less severe disabilities.

Measurement of the impact of early intervention services has focused upon the proportion of high-risk infants who become developmentally disabled after age three. The reasons for which high-risk infant cases are "closed," (i.e., why children are no longer classified as active regional center high-risk infants) are shown in Chart 6.3. Data from the first years of the prevention program indicated that 28.5 percent of the infants whose cases were closed before January 1987 became active clients of the regional centers. Of those cases closed since January 1987, the proportion entering the regional center caseloads has dropped to 19.1 percent. However, the percentage of persons who cannot be followed and whose outcomes are therefore unknown has increased. This makes interpretation of the data somewhat difficult, since it is conceivable that some of these children have developed disabilities, but are not receiving service.

Since July 1985, when the prevention program began, total regional center high-risk infant caseloads statewide have more than doubled, increasing to over 7,200 cases in February 1990. Data also suggest that these infants are receiving services at an earlier age. During the first year of the early intervention program about 34.3 percent of the infants were identified and began receiving services while less than six months of age; during the past year, over 48.2 percent of the new infants were identified and began service within the first six months of life. (See Chart 6.4)

Most of the infants meet multiple risk criteria, being premature, having low birth weight, and having other medical problems as well. Chart 6.5 shows the risk factors or indicators of at-risk status among the high risk infants served by regional centers.

Long term follow-up of high-risk infants documents the reduction of child abuse, hospitalization, and use of special social or educational services among those who received early intervention services. Through intervention, children who otherwise would be severely disabled gain improved language, social, and motor skills. Improved family functioning and less use of out-of-home placement also result from early intervention services.

In order to establish a clearly defined and uniform basis for the delivery of services to highrisk inf@, the Department and the Association of Regional Center Agencies (ARCA) developed comprehensive prevention service guidelines. The guidelines cover infant eligibility criteria, intake procedures, client and service coding and data reporting, assessment and case management processes, and case closing recor=endations. During 1987, ARCA ratified the Department's prevention service guidelines. They are now being updated to reflect the most current knowledge about effective practices.

In addition, the Department has developed a protocol for review of regional center prevention programs. 'ne review makes extensive use of the data reported on regional center prevention clients and includes purchase of service information. An on-site visit is conducted to review client records and interview staff. ff deficiencies are noted, they are discussed with regional center representatives. Such reviews are generally good indicators of issues which require discussion or additional research. This process has proven to be effective in promoting good quality prevention programs throughout the regional center system.

Future actions in the area of prevention will focus on determining the best early intervention services for infants with specific risk factors. During this long-range plan period, the Department will continue to direct clients and their families into early intervention services and encourage the development of new resources.

PUBLIC AND PROFESSIONAIL EDUCATION
This objective appeared in the LRP 88-93, and is now restated to reflect Department awareness of changes in the composition of the California population. The growing preponderance of several groups previously not served by the system calls for new, innovative outreach efforts. For instance, many inu-nigrants do not know of the existence of prevention and early intervention services. Not only must information be made available, but it must be communicated in the native language of each of these groups. Concentration on developmental disability or delay resulting from substance-abuse or pediatric AIDS is another new item on the prevention agenda.

Naturally, this objective still addresses the need of the general populace for prevention outreach education. But, in addition, the Department wishes to ensure that prevention information is made readily available to new groups who are in need of it through specially tailored educational programs and public awareness campaigns. Such efforts have had consistent support from parents and professionals who believe in the value of an aggressive professional education and public awareness effort.

During 1987, the Department began to collect prevention materials produced or used by regional center prevention programs. Many pamphlets, brochures, periodicals, books, and other printed materials were collected or cited by reference. A bibliography was produced and became the basis of a comprehensive resource directory of prevention materials. In addition, priorities were set for public information campaigns on the issues of drowning prevention, bicycle safety, lifestyle during pregnancy, and alcohol and drug abuse. Public information packets and public service announcements for radio and television broadcast were developed for use by each regional center on these topics, and have reportedly been quite helpful. Each regional center attempts to tailor its efforts to the local issues of its catchment area. As mentioned above, however, there are still groups within the population that remain unserved.

Future actions will involve determining the most effective process for setting statewide priorities for prevention education that reaches all California residents. Liaison will be maintained with appropriate public and private agencies engaged in prevention outreach and professional education. Emphasis will also be given to developing strategies for effective collaborative training with regional centers. Effective regional center activities will be reviewed, analyzed, and disseminated to all centers. The prevention program will work closely with the Department's Early Intervention Program to meet the latter program's statewide outreach goals.

The following objective is established:

INTERAGENCY PREVIENTION PLAN
A prevention task force was established by the Health and Welfare Agency in 1984. It was given the responsibility of developing a comprehensive master plan for prevention of developmental disabilities and birth defects. The product of that group, Prevention 1990: A Plan for the Prevention of Developmental Disabilities and Birth Defects, included numerous reconnnendations for specific programmatic actions. Many recommendations have been implemented, but others remain to be addressed. Research findings, technological breakthroughs, and other scientific advances are occurring at an accelerating pace. New findings necessitate development of a more current plan that incorporates the latest information. The process of producing the new master plan, reflecting the emphasis on childhood disability, is underway. A new task force was appointed in May, 1990 and its members provide advice and assistance.

The following objective is established:

AUTOMATED INFORMATION REPORTING SYSTEM
This objective, carried over from the LRP 88-93, addresses the need for specialized data on clients receiving prevention services. The Department's informational requirements for both high-risk infants and clients who receive genetic services are considered under this objective.

While the Department already has a client assessment and information reporting system, the Client Development Evaluation Report (CDER), users of the system find that it is not useful for clients under the age of three. CDER concentrates on self-help skill acquisition, behavioral characteristics, and other skills and attributes which are often beyond the functioning level of a very young child with a developmental delay. By obtaining information in a form designed specifically to focus on the characteristics of children under age three, the Department can better evaluate current programs for children and plan for improved early intervention services.

The Department, in conjunction with ARCA, has developed a new reporting form for infants, to obtain needed information about both high-risk infants and young children already diagnosed with a developmental disability. The new reporting form will replace both the current Prevention High Risk Infant Report and CDER for all clients under the age of 36 months. The proposed format includes basic identification and background information, qualifying risk factor data for high-risk infants, diagnostic data for those already classified as having a developmental disability, and health status information, equipment needs, and service information for both groups.

Use of the proposed reporting form for infants will be discussed with the various ARCA conunittees. An automation plan will be developed that parallels the current CDER processing. A detailed reporting manual will be written, and finally, comprehensive training will be conducted for report preparers.

The following objective is established:

LOCAIL INTERAGENCY PLANNING AND COORDINATION
Amendments to the Education of the Handicapped Act (P.L. 99-457) require planning, development, and coordination of early intervention programs to occur on a statewide basis. A principal assumption underlying coordinated planning efforts is that no single agency or discipline is equipped to address the diversity of needs of infants and toddlers with handicaps. An interagency, interdisciplinary approach is vital in providing unduplicated services to these children and their families.

It is also desirable that the major work in both planning and delivering services be done at the local community level. Conununities differ in their needs, resources, philosophies, and expertise in serving infants and toddlers with exceptional needs and their families. The Department's responsibility as the lead agency is to facilitate a coordinated, interagency, multi-disciplinary approach to providing early intervention services at the local level.

In October 1988, the Department selected 26 organizations across the state to coordinate local early intervention service planning efforts. Each local planning area (LPA) contractor is responsible for (1) developing collaborative relationships with agencies providing early intervention services and formalizing these in local interagency agreements; (2) conducting service needs assessments; (3) proposing an expenditure plan to meet unmet needs; and (4) administering direct service grant funds. The work of the LPA contractors is supported entirely with monies appropriated through Part H of the federal Education of the Handicapped Act Amendments.

The tasks specified above are in various stages of completion at the time of this writing, and Early Intervention Program staff anticipate extending the contracts with LPA contractors to September 30, 1991, in order to continue the planning and coordination activities recommended by the Interagency Coordinating Council (ICC) in February 1990.

Department participation in the fourth funding cycle of the federal prevention program is uncertain, because it could expand entitlement without necessarily expanding benefits over the current system. However, ongoing commitment to early intervention services as a preventive measure is central to the Department's mission.

Hence, the following objective for local planning and coordination is established as follows:

TECHNICAIL ASSISTANCE NETWORK
To assist local communities and the ICC in planning the early intervention system, the Department established a statewide technical assistance network. In the LRP 88-93, this was established as an objective under Goal 7, in connection with our participation in the federal early intervention program. It will now be continued as part of Goal 6.

In 1988, the Department entered into a contract with the California Early Intervention Technical Assistance Network (CEI*TAN). The terms of this contract included (1) preparing a unique technical assistance plan for each of the 26 local planning areas; (2) maintaining a statewide network of technical experts and consultants; (3) providing technical assistance to the Department and the ICC in policy analysis; and (4) developing a mechanism for LPAs to obtain information on state, national, and international efforts in the early intervention field on an ongoing basis.

Although these tasks have been completed, Early Intervention Program staff anticipate that an amended contract will produce a series of manuals and policies in important areas such as outreach to multicultural families, parent and professional collaboration on various issues, preservice and in-service training to early intervention personnel, and other issues as well.

Therefore, the objective for this area is as follows:

EARLY INTERVENTION LEGISILATION AND IMPLEMENTING FEDERAIL REOUIREMENTS
The Department's early intervention efforts have produced a wealth of information, data, and networks that can be used to enhance the existing early intervention system. For instance, the 26 LPA contractors will have established collaborative relationships among all agencies in their areas that provide early intervention services. In many instances, these are formalized in local interagency agreements. Needs assessments reflecting local variations have been completed. Expenditure plans have been developed to specify how unmet needs might be satisfied, and federal funds have been channeled into the service system. The Department will incorporate these new developments as ongoing activities, making the body of information generated during the first three years of Department participation in the federal program the basis of legislative proposals to enhance the existing Early Intervention Program.

Participation in the third grant cycle requires that states adopt a formal policy addressing all of the federally required components of the statewide system of early intervention services. The Department is doing this now. Contracts were awarded to six contractors who researched and analyzed a number of issues related to the requirements of the federal law. These issues include:

1. developing a system for compiling data on the numbers of handicapped infants and toddlers, and their families, in need of early intervention services,
2. determining the numbers of such infants and toddlers, and their families, served,
3. determining the types of services provided,
4. developing policies and procedures relating to the establishment and maintenance of standards to ensure that the necessary personnel are appropriately trained,
5. developing an individualized family service plan process in which the primary focus is on supporting the child and family within their own culture and value system,
6. defining an outreach and education plan that addresses the training needs of parents, families, and care providers,
7. defining "developmental delay," as well as the high-risk factors that are to be included in the definition, and
8. conducting a comprehensive cost evaluation study to evaluate the fiscal impact of implementing all components of P.L. 99-457.

The research findings will provide information essential to California's decision regarding future implementation of the federal requirements for the statewide early intervention system.

The following objectives in the area of early intervention are established: