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.

One final way to more clearly illustrate services and funding is to briefly review a representative support plan for a young adult person with developmental disabilities. This individual service plan provides a summary for a county to commit to support a person's service choices. These plans are typically prepared for one year periods and are updated at least annually. Such a plan is the culmination of a process of interviews, needs assessments, information gathering, problem solving and a potential variety of other activities to assist a consumer and plan development. These activities are most frequently accomplished with the assistance of a case manager or service coordinator. For the purposes of this class, we have used the fictional character of Robert Green to illustrate how a support plan is developed. In reviewing Robert Green's community service plan, he resides in an apartment, which he shares with a second person. His daily primary support is provided by a live-in couple, who he has likely employed with the assistance and ongoing coordination help of an agency and/ or case manager and/or his family. The couple who provide live-in support have weekly relief via a respite care plan which is identified on page two. The funding for these services is provided by Medical Assistance waiver funds for which Mr. Green was made eligible along with the contributions of his social security benefits. This plan illustrates other services we have identified earlier, such as vocational activities, transportation needs, which incidently can be very challenging to arrange and fund. Along with a variety of held services, the funding for these services emanates from a variety of sources as discussed earlier. Funding resources which are attached to people, such as the Medical Assistance waiver services, have and are changing the quality of life for people by providing a voice for people in making choices and decisions in community living. This individual support planning process is in contrast to the more traditional budget and funding process, whereby agencies are provided with county monies from which they create service slots for clients to be fit into, whether was the desired or needed service. We will further discuss this emerging shift in service philosophy, values and funding a little later. But before we leave the area of funding, it should be noted that current law in Wisconsin allows the county to provide services only within the limits of available funding and to allocate services among recipients to reflect the availability of limited resources. Therefore, the actual level and types of services offered will vary from county to county.

This provides the basis for our next topic, and that is waiting lists, which are an have become an overwhelming and depressing problem for consumers and families for people residing in nearly every Wisconsin county. Waiting lists became a significant problem for people in our state an some other parts of the nations in the late 1970's and early 1980s. A sample of some of the services and the most current numbers of people waiting to have access to residential, vocational, and case management support to mention only a few areas is illustrated here with this graphic. Solution for the waiting list issues are primarily related to unmet funding requests and revenue generating needs which challenge service providers, advocates, families and lawmakers at the state, county and federal level. Unfortunately, this list identifying service needs for over 6,000 residents, grows by more than 5% annually. There have been few viable solutions to this monumental concern, short of increased funding commitments needed probably at all levels of government. Needless to say, the funding needs and problems have not been popular issues or cause-embraced or supported by legislators. A significant number of people waiting for residential services live at home with an elderly parent or caretaker. Sadly, the eventful manner of support is then provided by an emergency process when a parent's health status is so impaired they are unable to provide basic care, or an alternative placement is arranged because of the parent's death. Next we will watch a video clip from a tape called, AA Matter of Fact@, which depicts many of the issues related to service needs and budget shortfalls. The concerns are voiced by a variety of people who present their perspectives on these issues.

Video Clip

AA Matter of Fact?@

Progressive Communications Systems, Inc.

(consumer) You cut our money, my job, my life, you know that? You turn around and you cut back more. You cut back more. You know, its outrageous. You try it once, living as a handicapped in the world , it is very tough out there.

(Steve Braunginn) Hi I'm Steve Braunginn and I live and work here in Dane County. As a citizen, I am concerned about what the state and national tax policies mean to the county budget process here, as well as in the other 71 counties in Wisconsin. The young man you just heard was one of many who spoke at a hearing held at the Dane County Courthouse. An overflow crowd packed the hearing room that night, to insist that the county executive, Rick Phelps, and the Dane County Board not break promises made to developmentally disabled citizens and their families. These families have been assisted by state and federally mandated programs. However, because of shifting tax burdens, the county is picking up more of the tab in sales and property taxes.

(parent) Well, everybody says when you move to Dane County this is the best place to be-- Madison is such a terrific place. Well, I'm almost ashamed now to be living here, to have to go through all this. It should be done for our children.

(consumer) There are thousands of people in Dane County who have epilepsy. The message they're getting from this is, you're unimportant. What about those 800 new people who come in the next 10 years? What are you going to do to help them?

(Steve Braunginn) While the board eventually voted to increase funding, the increase did not meet the rate of inflation. The programs they fund allow the developmentally disabled to be a part of the community. For many, institutionalization is the alternative. It costs more and is less humane. This was the third consecutive year that developmentally disabled citizens and their families had to appear before the county board. To them, the process is frustrating, unnecessary and dehumanizing. Dane County Executive Rick Phelps explained how the county budget is affected by national and state tax policies.

(Rick Phelps, Dane County Executive) The federal government has retreated long ago, and is still retreating in its responsibilities. The state, quite frankly, is starting to go out the same exit and we can't. You know, we live here, these are people, these are our neighbors, these are people we live with, this is our community. Its not just a matter of changing numbers in a formula. If you want to cut taxes at a federal level and you want to cut capital gains, you just sort of change numbers on a formula. Here, in order to deal with the competing interests, some people go without. That is hard to reconcile.

(Gail Jacob, Options for Community Living) The reality is that the county is being left in the lurch by the state. The state mandates that certain services need to be provided, but they don't provide the dollars that are available. Certainly, with this administration its been disastrous. Prior to this, ten or fifteen years ago, there was a very strong commitment towards community services. The community service system was developed, there really was a leadership from the Department of Health and Social Services at the state level from people that the Governor appointed that were very committed to moving people into the community and providing the necessary support. We're in this process of developing an excellent system. Wisconsin still has a reputation in the entire United States, people come here to see what we're doing for people with developmental disabilities. But the reality is, in recent years is just we've been losing ground.

(Paul White, Community TIES) In some ways as a provider and working closely with these programs and being witness to the intense need for these types of services, many times I think I feel helpless and there needs to be someone, a responsiveness either to the county or state or national level in terms of really looking at not only the current needs, but the increased demand.

(Steve Braunginn) A quick glance at the newspapers may have led you to believe that the county had increased its funding for the developmentally disabled. In fact, what looked like an increase was actually a decrease. Dane County community service managers Dan Rossiter and Sally Mather feel the pressure brought on by shrinking funds.

(Sally Mather, Community Services Manager) The waiting lists are long and oppressive. They have been growing non-stop for many years and right now. We have over 200 families waiting for something in the system. Well, we've often thought about not calling them waiting lists, because the belief is that if you wait long enough you'll get something. I don't think we can say that anymore. I don't think that the political climate and the financial climate is such that its only a matter of time before you get something. I don't think that is true anymore. Really, we should just call them registration lists or something.

(Dan Rossiter, Community Services Manager) We are looking at a crisis situation fifteen years from now that we are ill prepared for... Right now I have just sort of figured out, that if we had all of the money that we wanted it would take us close to twenty years to reach a waiting list of zero. Every year we add 25 to 40 people to that waiting list, so every year we are putting off an almost impossible task of having to respond to people. Like you say, there is this critical point that fifteen years from now where we are simply going to have to have some type of response. And if we don't start planning for it now, its going to cost us mega dollars.

(mother) I am arguing for a program so I can stay on the waiting list, which never goes down, which only goes up. We're on the waiting list for a teen program. He will be 30 when he is eligible. I laugh at that sometimes, and the other times, I go, what the heck am I going to do? He is 12. The rate of taking people off lists is less than one person per year. He is 12. He is in an inappropriate day care program because I work. That is where he is at. Its not quality. I drop him off there and say, heh, the real world is you get a bunch of crap with a bunch of the good stuff. I mean, it is horrifying to me. So now we're going to cut some more programs. I want to just say something quite specific and I don't mean to be less than eloquent, but one of the supports that I have received which is fundamental in addition to food, clothing and shelter, is the assistance of the community TIES program to teach me how to teach my son and his care givers, how to help him go to the bathroom. I mean if going to the bathroom is a luxury, send me someplace. I don't want to be here.

(Steve Braunginn) Sandra Rodriguez and her daughter, Jessica, clearly expressed the importance of these programs to their family.

(Sandra Rodriguez) My daughter Jessica was adopted from Korea, with cerebral palsy. We did not know it when she came. It has affected her speech greatly, and she is unable to communicate verbally. So with the help of our neurologist, Mary Dominski, who said there is no other ballpark in town for us other than the TRACE center at the Waisman Center. So that is where we were referred. I can't tell you what this meant to us. Jessica has been referred to as a gifted and talented mind trapped inside of a cerebral palsy body. If it weren't for the early intervention of TRACE, which opened up a whole new world for her, I believe she would not be functioning as well as she is in first grade. She now communicates readily through sign, communication board and computer. I appeal to you to reconsider cutting the TRACE project from your budget.

(Steve Braunginn) Despite the budget battle, Dane County has been noted for its commitment to the developmentally disabled. With University of Wisconsin's Lou Brown, a nationally recognized leader in main streaming, with programs in the Madison school district, and with services like the TRACE program, Community TIES and others, Dane County has a reputation for creating and funding programs that are among the best in the nation.

(Jessica Rodriguez types on her communication board) Now I lay me down to sleep, I pray thee Lord my soul to keep. If I should die before I wake, I pray thee Lord my soul to take. Amen. (Sandra Rodriguez) Things like that are really important to her to participate in, to be able to say her table grace with the rest of us. We don't know all the signs yet. We haven't learned all the signs to be able to say something for very long. So this really gives us the ability to let her participate. It is a wonderful tool.

(Steve Braunginn) Jessica has benefitted immensely from communication tools and services provided by the Waisman Center.

(Sandra Rodriguez) If we hadn't had the help from the people at the Waisman Center, I just don't know what we would be doing now. We would be lost. So I am sure that there are other people that have certain disabilities that I am sure need specific programs. But I think we're really lucky to live in Dane County and I think there are a lot of wonderful programs, that I don't think people know how lucky we are here.

(Steve Braunginn) Jessica's story has been a success, for funding for her program is not guaranteed. Others can only dream of receiving such services. The closest many come to being in a program is putting their names on a waiting list. Taxpayers need to know that the need for human services is increasing,

(Dan Rossiter) But somehow we always have salt for the highways as a county. Somehow we always have to have programs for people with disabilities. That has to be a given, as much as a given as salt for the highways, we have to have programs for people.

(Gail Jacob) The thing that some county board supervisors say is, well we keep putting money into this and it doesn't go away, you guys don't fix it. They have this idea that somehow, you know, we're going to cure people with developmental disabilities, I don't know. Again, they just get mad because they have to keep putting more in there and I think they just need a different frame of reference, to say this is as much our responsibility as fixing the roads every year.

(Dan Rossitor) I was talking to a friend who goes to a barber in Mount Horeb, who said, well, I think the human services budget is OK. I just want my money spent wisely. That is what I think the taxpayers revolt is about. It isn't about not wanting to pay taxes. It is not wanting to spend money foolishly. I would ask anybody to come and look at our programs and see where indeed there is any money being foolishly spent.

(Steve Braunginn) Dane County does not meet the basic human needs for many of its citizens. The hearing at the courthouse should have shed some light on the frustration people feel in regards to the budget process. The financial squeeze is much more painful for some than it is for others

(mother) I know that it is very difficult to decide what to do about the massive amount of human need that we have in our society, but I believe that until we have a clear, redistribution of wealth, at the macro level, we're going to sit here every year. So we may as well just get prepared and assume that we're going to deal with very complicated human services issues. So, its not going to go away. That is no big surprise. And it is sickening, and it is tiring and it is dehumanizing, to have to come up in front of a crowd of people, on cable, and have to talk about your kids toileting program as a way of trying to get the message across. This is basic stuff. This is basic human need. This is not fluff.

(DON ANDERSON) We need to leave this difficult area and move on to a final topic, which in part relates to the service waiting list dilemmas. A portion of our state's population of people with developmental disabilities resides in one of our three state centers. The graphic here depicts the location of each institution. Northern center at Chippewa Falls, Central Center in Madison and Southern Center located near Union Grove in Racine County. The graphic identifies the current resident census and the daily cost for each person's care. The current total population of these three institution is approximately 1400 people, with an annual budget of $293 million. The average daily cost of care is $260 per day per resident. The issue here relates to the previous discussion of funding levels which do not meet community needs and have resulted in significant waiting lists over the past several years. The center populations, along with another 4,000 people, who reside in county and private institutions, represent less than 6% of the total population of 35,000 people with developmental disabilities in Wisconsin. The funding level for these people represents more than 64% of all available federal, state and county funding support. In contrast, only 34% of these same targeted funds supports 94% of the people who live in the community and receive one or more county funded services. This vary skewed funding situation is illustrated by this graphic. This picture is further magnified when you add the needs of another 6,800 community people on waiting lists who receive no services. In forthcoming lectures, further issues and information will be presented on this topic.

In earlier classes, and from several references made today, the values which guide budgeting and planning for people in the community are an important set of beliefs to address both human and civil rights. Some of the current values of supporting people with disabilities can be viewed from a historical perspective, as seen with this graphic. The paradigm shift in values and attitudes as resulted in closing down and downsizing large institutions over the past thirty some years. From large institutions, people were frequently located to such settings as large group homes, with few changes and opportunities for residents to make choices regarding the quality of life. People's lives were generally managed by agencies who had towered over them in part because of the funding and budget control gleaned through county, state and federal agreements. The shift we have and our continuing to witness is illustrated here, as we have seen shifts in development and funding from the period of institutional reform to the deinstitutionalization period in which we appear to be moving very slowly out of, to the community membership period. This last phase is in a stage with excellent foundations in which consumer empowerment is highlighted through such legislation as the Family Support Program, Birth to 3 legislation, and the Medical Assistance Waiver program and funding by which person directed services can now be realized.

Statewide service planning activities are the responsibility of the Council on Developmental Disabilities. Recently, this body of consumers, legislators, policy makers, service providers and family members had formulated a three year plan to aid in guiding and encouraging public policy making, initiating legislation to improve funding levels, advocacy activities, and many other areas of need. The graphic seen here summarizes a desired process for shifting resources from segregated institutions to community settings for people with disabilities.

(Don Anderson) This concludes today's class. The next class will be a continuation of Bev Doherty's lecture on Family Support services. Until our next class meeting, I am Don Anderson and goodbye.