Introduction to Module C

INTRODUCTION TO MODULE C

DON ANDERSON

Hello, and welcome again to Social Work 644. I am Don Anderson from the School of Social Work and the Waisman Center, here at the University of Wisconsin-Madison. For today's class, I would like to address the topic of service needs to support people with developmental disabilities who live in the community, and to review the organization and structure of the specialized social service delivery system, which is available for people with disabilities and their families. This topic of specialized services encompasses a vast amount of information and issues. Because of time constraints, I have elected some of the primary topics within the array of the service delivery system to discuss today. We will utilize the Wisconsin service delivery system as our program model for today's class. There are several different perspectives to view and experience services and support. They are from that of a parent, guardian or caretaker, as an agency case manager or services coordinator, as an elected county board member approving agency budgets, and most importantly, from the perspective of the consumer or the recipient of services. Thus far in this course you have, and will continue to experience, many references and stories related to the service needs and supports people experience or desire or request to improve the quality and or quantity of support in their lives. Today we will attempt to address some of the issues from several different vantage points.

One of the major national impacts in the history of developing legislation to support community services for people with developmental disabilities in this country, was the leadership provided by President Kennedy. A speech made in 1963 outlined a need for a movement to support the downsizing of institutions, provide community living opportunities, and press for fuller recognition for the citizenship of persons with disabilities. Thirty years later, we are continuing to work towards these goals. A dramatic decrease of people residing in state operated institutions occurred in the 1960s and 1970s. From a population of nearly 200,000 in 1967 to about 81,000 people residing in state operated facilities in 1992. Although a few states like New Hampshire have closed their public institutions, and admissions continue to decline, there are a great many people with developmental disabilities who remain in restricted environments in this country. The shift to community living has made major strides in the framework of human service delivery in our country. But challenges remain to move further in supporting people's choices to live and be supported in their own community neighborhoods. I would like to begin with a brief review of some of the salient legislation and public laws and state statutes which provide the service delivery foundation and organizational framework for people with disabilities.

Statutory organization of human services can be seen and illustrated on this graphic where you can identify some of the primary Wisconsin state statutes and federal laws which outline the services which may be made available for people with disabilities across the lifespan or life course. From birth to age 3, the primary support for young children and families is outlined in Public Law 99-457 and provided by county, community service agencies or through an agency contracted by a county board. Public special education services are available for children ages 3-21, and are described in both Public Law 94-142 and state statute, Chapter 115. These services and supports, along with other resources for children and families, will be presented in other course lectures. For today, I will primarily focus on services for adults from a point of transition from the children system.

It is important to point out as illustrated in this lifespan service support graphic, that at the age of 18, children in the state of Wisconsin and for that matter, most parts of our country, legally become adults. This is a time that parents and support agency personnel, if requested, will need to address the potentially challenging question of guardianship. The issue at hand is the need to assess the young adult person's capacities, skills and abilities to independently make financial, health care and other decisions about living in the community or society. If there is a need for guardianship services, either to manage money or to meet personal health or safety needs, a major question will need to be addressed. That is, what type, if any, form of guardianship is best to fit a young adult person's needs. Is full or partial guardianship needed, or is guardianship an answer or appropriate to meet a support need for someone? Is there a creative problem solving process which could be designed with the aid of a community case manager or service provider agency, as an alternative to adjudicating guardianship? Guardianship and protective services are a large topic and could consume an entire class time. At this point, I would like to move on to discuss the organization and structure of the service delivery system.

The Federal Social Security Act of 1935 provides an umbrella piece of legislation for numerous support services, including entitlement benefits, such as Supplemental Security Income or SSI, Medical Assistance, or Medicare and Medicaid. Also a variety of generic health care, child welfare and protective services along with early intervention and health prevention areas to mention only a few. The level of any of these services is dependent upon federal funding appropriations. Since the shift of interests and support to provide community based supports in the early 1970s, there have been several pieces of legislation to emphasize this national service delivery direction. There are three pieces of legislation I would like to briefly discuss. The first is Public Law 94-103, which was passed in 1975. It is titled the Developmental Disabilities Assistance Act and also contains the Bill of Rights for people with developmental disabilities. This legislation more clearly established the group of citizens who make up the population of people identified with a diagnostic label of developmental disability. It also established state planning and policy monitoring councils in each state, and required the establishment of legal and civil rights protection and advocacy agencies in each state. All o f these mentioned programs and service components are contained within our state Developmental Disabilities statute, Chapter 51, and specifically Chapter 51.437. This legislation and our public special education act, along with the more recent Birth to 3 education legislation, will be covered in future course presentations.

Next I would like to turn to how services for people with disabilities are generally and organized in our state. We live in a state that is oriented to have strong county government control in regard to budgets, public health, social and human services, public roads and many other areas. The relationship between state and local county government in regard to social and human services is an interesting phenomenon in the state of Wisconsin. In general, the state legislature passes legislation and administrative rules with the expectation that county human boards or agencies provide services that are designed for state level. This design poses many issues and questions, especially related to the level of funding support from the state to the county governments in the form of community aids. We will not take on the full topic for today's class, but turn to identifying what role county human service departments have in providing support services. Next I would like to address the organization of county services for people with developmental disabilities. First, a look at how services are organized and provided; second, what services are available; third, the eligibility requirements for obtaining services; fourth, the waiting list issues; fifth, statewide services and identifying the people who reside in the state centers; and sixth, funding levels and the cost of care.

Typically at the county level, services for people with developmental disabilities are delivered either directly by the county or contracted out to either a for-profit or non-profit organization. Many Wisconsin counties have elected to directly provide some services combined with contractual agreements for others. A responsibility for these services is the county board of supervisors, via the appointment of a committee board which is comprised of a majority of elected county board members, along with community citizens who represent the needs and interests of people with disabilities. The human services or social services board in turn is responsible for appointing the developmental disabilities manager or coordinator. In smaller counties, these duties are frequently combined with the responsibilities for another population of people with disabilities, such as people with mental health service needs.

Next , I would like to turn to the core or primary services that are typically provided at the county level. For children and families, the visual you see identifies case management, Birth to 3 services, respite care, the family support program, foster care and a variety of other services such as services to support parents with after school day care needs and other kinds of supports when children are not in school. The services for adults are typically the following: information and referral, intake and assessment, case management, vocational services, residential supports, recreational and alternative activities, in-home support, specialized transportation, daily living skills, and a variety of other services as deemed necessary.

Next I would like to move on to addressing the eligibility requirements for services at the county or community level. One of the first criterion that has to be met is that a client or a consumer must meet the state definition of having a developmental disability. The next requirement is that a consumer must have a disability that meets a substantial deficit in three or more of the following areas of life activity. Those areas are self care, receptive and expressive language, learning, mobility, self direction, the capacity for independent living and economic self sufficiency. Another requirement is that the client or consumer must be a resident of that particular county in which he or she is applying for services. If these requirements are met, a person then is typically made eligible for one or more services as deemed necessary or appropriate. Because of decreasing funding levels, many people who are accepted for services are not able to obtain a service or have access because of long waiting lists which have emerged in the last eight to nine years. The reason for these waiting lists is that funding has not been made available to meet the long term needs of this population, and inflation has not kept up with the community need for services. It is also difficult to obtain staff at salaries which do not equate with the needed work, especially for people working in jobs as direct care providers in residential and vocational settings. Employees working in state and some county operated facilities are better compensated than people who work in non-profit agencies in the community.

To continue, I would like to next move on to an overview of funding issues. An understanding of how the services and support system works for people with disabilities in any given community, can be puzzling and confusing for consumers and families seeking assistance. The funding resources and related budget development process can be an equally cloudy and complex maze for consumers, parents and just about everyone for that matter. Over the past several decades in our country and state, some important strides have been made to improve the quality of life for people with long term support needs by designing, implementing and funding community based services. However, the current levels of available funding are insufficient to meet the needs of people on waiting lists.

Also, consumers and advocates have frequently worked on legislation to improve basic barriers. For example, in the regulations to support people who desire and need in-home care services, which are designed to prevent costly nursing home placements. Legislation to ameliorate these home based support services for people with disabilities has frequently been defeated because of a shift of the political power in Congress or our state legislature after years of advocacy activities to pass such legislation. From a historical perspective, other issues can readily be identified in regard to the legislative process to fund services for people with disabilities in our country. Certainly many positive laws have been enacted and public policy accomplishments have been achieved during the past several years, but a long range plan is needed nationally to address multiple support needs for planning and funding community service options.

To proceed, I would like to continue with an overview of the typical funding sources available at the county level. At the county level, several funding mechanisms are utilized to meet different service needs, and many counties, as you can depict from the graphic, depend on a variety of funding sources. State community aids, which are a combination of Title 20 Federal Social Security funds and state or GPR (general purpose revenues). These dollars are required to be matched with county levied tax dollars to form a budget. Other funds are derived from clients of Social Security incomes, Medical Assistance Title 19 revenues, along with Medical Assistance waiver funds. These are the major revenue sources which combine together and provide a budget base to support a variety of community residential, and vocational or day service options, transportation and case management support as illustrated here. In summary, as you can see from these sample county budgets, the primary expenses, nearly 50% for community services for adults, are directed to meet residential support needs. The next major expenditures are committed to meet vocational and day service needs. On the revenue side for this particular county, these major funding sources are derived from the Medical Assistance waiver program, state community aids and the county's tax levy monies. The MA waiver funds are referred to as CIP, the Community Integration Program, and CSLA or Community Supported Living Arrangements. Because of a federal waiver, the Community Integration and CSLA programs allow Medical Assistance funds that would have been required to cover the cost of institutional care for people with developmental disabilities, can be used for long term support services in community based settings. These funds based on approved support budgets, are permanently assigned to individual people who meet program eligibility requirements . This funding source has in part empowered people to have the opportunities to make such choices and decisions in their lives, particularly in the area of employing direct care personnel, the type of living arrangements, and a potential peer or friend to share the expenses of a house or an apartment.