Section Three: Celebrating Progress
MAKING A DIFFERENCE
In 1966, a two volume comprehensive plan contained hundreds of recommendations for needed improvements in services, the regional deployment of services, and facilities. This statewide construction plan would qualify Minnesota for federal matching funds.
The language of the recommendations is repeated in much of what is now being written, though with quite different meaning. Recommendations contained phrases that resonate today: earning to live; the dignity of work; a house must be a home. At that time, the terms referred to smaller, though still segregated programs. The emphasis was on reforming institutional services rather than eliminating them. There were also calls for employing people with developmental disabilities in government departments and recognizing the fact that all other avenues for maintenance in the community should be pursued before deciding on residential placement.
The Developmental Disabilities Services and Facilities Construction Act was passed in 1970. Each state was required to establish a state council on developmental disabilities. The council would be responsible for setting the direction and submitting a state plan. A designated state agency would be responsible for administering and supervising administration of the state plan.
The DD Act ensured that services would include people with conditions in addition to mental retardation cerebral palsy, epilepsy or neurological conditions that originate before the age of 18 and are expected to continue for a long time and result in substantial limitations.
Even decades later, the council has far exceeded my expectations.
State councils were expected to fill service gaps in 16 areas: diagnosis, treatment, day care, training, education, recreation, follow-along, transportation, evaluation, personal care, domiciliary care, special living arrangements, sheltered employment, counseling, protective legal services, and information and referral.
THE FIRST DECADE IN MINNESOTA
1In 1976, the name changed to the Minnesota Governors Planning Council on Developmental Disabilities. In 1995, the Council became the Minnesota Governors Council on Developmental Disabilities.
In the 1970s, the GCDD began funding a number of innovative projects:
The GCDD also funded legal advocacy through the Legal Aid Society. This pre-dated the inclusion of Protection and Legal Advocacy in the mandate of the DD Act.
In the mid to late 1970s, several changes in Minnesota helped to focus efforts that had been supported earlier by demonstration grants. In 1975, zoning for group homes was established in state statute. In 1976, the Family Subsidy Program was established to support children with developmental disabilities to live with their families. In 1979, the Minnesota Community Social Services Act mandated county authority over the funding, planning and administration of community social services, including ensuring the means of facilitating access to appropriate services for people with disabilities.
The usefulness and impact of service grants grew in the middle of the decade when they were tied to the rapidly expanding demands for a comprehensive system and the development of community alternatives. Momentum was developing for a much more focused effort on Deinstitutionalization and the development of community alternatives. The grant resources were dedicated to developing a statewide systems plan, advocacy and case management.
A New Direction for Planning
These federal funds were used to support the Community Alternatives and Institutional Reform (CAIR) Project and led to the development of the 1976 GCDD goals related to Community Alternatives and Institutional Reform:
These planning grants brought people together to discuss issues and develop community development strategies on a regional level. Information flowed freely between the GCDD and the community. A number of studies and projects were initiated in areas that preceded state attention such as respite care, minority involvement, financial disincentives, and employment programs.
Further Changes in the DD Act
The 1975 Act added a bill of rights and mandated the establishment of a Protection and Advocacy System in every state. State plans had to address and support efforts designed to eliminate inappropriate institutional placements and improve the quality of institutional care. Autism and dyslexia were added to the list of conditions defined as developmental disabilities. Funding levels were increased for both state developmental disabilities councils and UAPs, and funds were also appropriated for "Special Projects" with a national scope (now called Projects of National Significance).
The 1978 amendments eliminated references to disabling conditions and added functional definitions.2 The age of onset also changed from 18 to 22 years.
Four federal priorities replaced the 16 basic services and included case management, child development, alternative community living arrangements, and nonvocational social development services.
2 Developmental disability is defined as a severe, chronic disability of a person attributable to a mental or physical impairment, is manifested before age 22, is likely to continue, results in functional limitations in three or more major life activities, and reflects the need for lifelong services.The 1980s A Whole New Ball Game
Strategies Guided by Clear Vision
By the beginning of the 1980s, it was increasingly clear that the DD Act was not going to be a major source of funding for direct services. Systemic change would require carefully thought out strategies that would:
In the early 1980s a number of key developments set the stage for dramatic possibilities if they could be harnessed and used intentionally to achieve a new vision.
From the early 1980s, the GCDD embarked on a series of strategies to use what leverage it had not just to make plans, but to effect systems change. The effectiveness of this strategy was recognized early on.
In 1986, GCDD was cited as one of ten exemplary human service planning agencies in part because the GCDD demonstrated one of the distinctions between merely making plans and true strategic planning. Bill Benton3 described some of the characteristics of exemplary planning:
Plan making is the process of preparing a document.
Planning is the process of translating vision into reality.
Planning attempts to make the future different than it otherwise might be.
Plan making makes no difference at all.
The GCDD has a history of trying to make a difference, to shape the future, rather than simply be shaped by it.
3 When the Going Gets Tough: Ten exemplary human services planning efforts Final Report. Prepared by Urban Systems Research & Engineering Inc. for the Office of Program Development, U.S. Office of Health and Human Services. September 1985.
The Policy Analysis Series is very impressive, possibly
While state plans have captured information about what was going on in the State at a given period of time, and how federal funds were spent, these plans are essentially compliance documents.
The Welsch Consent Decree
One commentator of the times described the role of these powerful, but modest looking documents:
In 1981 and 1982, the series focused on issues specifically related to deinstitutionalization. In 1983, and continuing through 1990, the Policy Analysis series reported on the impact of various grants and research activities supported by the GCDD. These documents would be useful at the federal level for gathering support for changes in policy and funding for family support, supported employment, the affirmative use of technology, and case management. The research ensured that the learning could be substantiated and shared with others.
The State Hospital study could have turned into an embarrassing loser.
In 1984, the Minnesota Legislature mandated the study of the possible economic effects from consolidation, conversion, or closure of state hospitals. The GCDD was given the responsibility for conducting the study and coordinating the plan. The Institutional Care and Economic Impact Board submitted recommendations and findings to the Legislature on January 31, 1985. The report was contained in eight technical papers, a second Policy Analysis Series prepared by the GCDD and entitled Issues Related to State Hospitals. An abbreviated policy briefing publication, Minnesotas State Hospitals: Mental Retardation, Mental Illness and Chemical Dependency, was also developed.
The briefing book, Developmental Disabilities and
Policy Briefing Documents
Developmental Disabilities and Public Policy: A Review for Policy Makers (January 1983) was the first of a new kind of publication, providing information about persons with developmental disabilities, trends in community services, and policy issues and alternatives for the 1980s. The idea was to create an accessible, attractive booklet that delivered the ideas.
In a review of ten exemplary human service planning efforts, Urban Systems Research & Engineering, Inc. described the marketing strategy:
Like the policy papers, this document was widely disseminated, but in a particularly noteworthy manner. Instead of simply distributing the document by mail, the brochure was personally delivered to key policy makers (e.g., state legislators) by a constituent involved in the developmental disability network.
Like all good writing, your publications give the reader
Developmental Disabilities and Public Policy laid the groundwork for a concerted effort to remove the disincentives to community living and urge Medicaid reform. It described the difference between a provider driven and a consumer driven system.
We need 50 copies of A New Way of Thinking.
The Mental Health Commission was an incredible learning experience.
The Mental Health System
In 1985, advocates met with Governor Rudy Perpichs speech writer and suggested that a blue ribbon panel was needed to look at the mental health system. The Governors Commission on Mental Health was announced on June 14, 1985, to look at several aspects of mental illness, and issues related to mental health services and policy. The GCDD was called upon to provide technical assistance and staff support to the Commission.
While some positive trends and exemplary services were highlighted, one sentence in the Commissions report was widely quoted:
In other words, the "system" is, to a significant extent, divided, inconsistent, uncoordinated, undirected, unaccountable, and without a unified direction.
Recommendations were organized according to three themes: making a commitment, organizing to meet the commitment, and ensuring that the commitment was met.
The 1986 Legislature enacted a mission statement for Minnesotas mental health system beginning: "The Commissioner of Human Services shall create and ensure a unified accountable, comprehensive system of mental health services." In 1987, the Comprehensive Mental Health Act was passed, requiring all 87 counties to provide a continuum of specific services for persons with mental illness, some local and some on a regional basis.
I very much enjoyed the family support paper. Please send another copy.
The GCDDs ability to use grants to support new initiatives was critical in its efforts to impact systemic change. However, three year planning cycles were episodic.
FFY 1981 to 1983
Over the three years, grants were awarded to 17 projects; eight projects spanned two or three years:
The funded projects became the basis for a paper in the Policy Analysis Series. Other papers in the series dealt with the lack of respite as a factor in institutional admissions, the positive impact of the states family subsidy program, the emergence of cost effective programs supporting families, and a literature review about respite services. The results of this work came together in 1986 Congressional testimony about the Community and Family Living Amendments and the need for Medicaid reform.
The groundwork was laid for a number of system changes in caregiver support and the use of Medicaid funding.
The McKnight Foundation chose the GCDD to administer the
FFYs 1982 to 1985
In addition to specific project activities, the following outcomes resulted:
The long term impacts of these grants resulted in systemic change in two key areas:
I would like to compliment the Council on the high
FFY 1983 - 1986 Behavior Management and Community Employment
Between 1983 and1986, grants funded 18 projects and 1,132 people were served.
The initial focus of the grants was on general improvements in day programs -- staff training, interagency cooperation, direct program support to individuals, and transportation. In addition, there were much more targeted efforts to assist individuals to get and keep jobs in the community.
Project outcomes included:
The community employment grant recipients continued the projects funded by the grant. At least one project achieved 100% community placement. The long term impact of these efforts certainly increased because the projects remained in operation beyond the initial funding period.
Minnesota has done an excellent job in defining the issues, identifying
The McKnight Foundation grants and the GCDDs service grants kick started a process toward change in supported employment. In 1985, the U.S. Office of Special Education and Rehabilitative Services (OSERS) approved a five year grant that resulted in the establishment of the Minnesota Supported Employment Project. (MnSEP).
Amendments to the Rehabilitation Act (P.L. 99-506) in 1986 established a federal program of state grants for supported employment for people with severe disabilities.
The Minnesota Legislative Task Force on Supported Employment was created in 1987, In 1988, the Task Force recommended maximizing federal funds and encouraging the expansion of federal initiatives; increasing state funds to expand community/ supported employment, including $4 million in new funding; and redirecting existing school and county funds to support community/supported employment.
Throughout the 1980s, the GCDD continued to provide information related to supported employment. The Policy Analysis Series was again used to inform others about the outcomes of the grant projects, research into the effectiveness of supported employment programs, and strategies for financing supported employment with state and federal funds that became available due to the federal commitment to supported employment.
FFY 1986 to 1989 Case Management
The GCDD thought that, in theory, case management should support families and adults with developmental disabilities. Support should be as non-intrusive as possible, easily accessible, and efficient and cost effective. Case management should be rooted in values that enhance individual growth, personal dignity, and inclusion in the social nature of humanity; and be dedicated to basic human and constitutional rights. Above all else, case management should produce positive change in peoples lives.
Public testimony in 1985 indicated that while case management is one of the most critical services, it was seen as one of the weakest. The GCDD decided to focus on case management as its priority for the three year planning cycle 1986-1989. Rather than using the funds for case managers, grant applications were sought for research, improving case management, empowering consumers, and volunteer monitoring.
The GCDD funded 13 projects in the following areas:
Specific project outcomes included:
The development and dissemination of publications, by the GCDD kept the issue of reforming the case management system alive. The Minnesota Case Management Study was summarized in a 1988 Policy Analysis Series paper. An earlier paper, The Case Management Team: Building community connections was reprinted in 1989. Case Management: Historical, Current & Future Perspectives was published in 1989 and Shaping Case Management in Minnesota was published in 1991.
The work on personal futures planning that started during this time period has had a lasting impact on how individuals with disabilities and their families plan for the future.
Personal futures planning is a tool for fostering new ways of thinking about people with developmental disabilities. Futures planning helps groups of people focus on opportunities for people with disabilities to develop personal relationships, have positive roles in community life, increase control over their own lives, and develop the skills and abilities to achieve these goals.
Its Never Too Early, Its Never Too Late is a classic publication. Entire agencies are adopting a personal futures planning approach so requests for these materials are increasing.
Dont wait for anyone. We need person based data
Changes in the DD Act
A Ten Year Priority
During the decade of the 1990s, the GCDDs priority was leadership. Grant funds were invested in the development of leadership skills among people with disabilities and their families. Youth and members of minority communities received specific attention. Projects of National Significance funds were used to develop a broader understanding of the concept of self determination and continue efforts to bolster family support. The GCDDs publications continued to give people information about innovative approaches and advocacy tools to effect change. Minnesotans Speak Out (1992 and 1997) amplified the voices of Minnesotans who spoke about what works well in the delivery system, where gaps exist, and where changes could be made.
The 1990 DD Act redefined integration as the use of the "same community resources in living, learning, working and enjoying life," and the development of "friendships and relationships" together with people without disabilities. The purpose of family support services expanded to include strengthening and maintaining the family unit, and preventing inappropriate out of home placements.
The 1994 DD Act placed greater emphasis on developing the capacities and competencies of individuals, and the purpose was more clearly stated in terms of capacity building and systemic change.
Partners in Policymaking®
Partners in Minnesota
The program was created in Minnesota in 1987. By 1990, more than 100 partners graduates were trained on policy issues and advocacy. What Partners graduates did with their learning clearly evidenced the long term results and benefits of the program:
In 1993, Debra Niedfeldt (MN) spoke to Mrs. Clinton and Marcia
The Partners program teaches leadership skills and the process of developing positive partnerships with elected officials and other policymakers who make decisions about services. Documented results show that the program results in increased independence, productivity, integration and inclusion of individuals with disabilities and their families into their communities. Partners graduates become active citizens in the policymaking process at local, state and national levels.
The program consists of three primary components:
By the year 2000, the Minnesota Partners program had trained just under 550 parents and people with disabilities with impressive results. The GCDD had funded the program consistently for thirteen years, eighteen classes had graduated, and the network of Partners graduates covered 80 of Minnesotas 87 counties.
Partners graduates continue to educate elected officials at local, state, and national levels; and distribute information on current issues. They actively participate in forums and meetings to discuss how services and supports really contribute to full community participation and family unity, and ways to improve the system and remove barriers for a more responsive and culturally competent delivery system.
Partners Goes National and International
In 1995, Partners in Policymaking could claim more than 4,000 graduates, each part of a growing national network of community leaders serving on policymaking committees, commissions, and local, state, and national boards. By 1996, 42 states had operated a Partners program, three more states were planning to offer the program, and Partners became operational in Great Britain and the Virgin Islands.
Today, 47 states have replicated the program or offered some type of leadership training. More than 9,000 individuals are part of the international network of Partners graduates.
Cultural Outreach Programs
In the African American community, small groups of parents began meeting twice a month for leadership training and personal support. Support groups and at-home services were also provided. Over the years, more than 300 African American families have been involved in this effort, at least 80 parents have graduated, and many are now Partners graduates. They have made impressive, concrete changes in their lives. In 1996, for instance, 25 children left out-of-home placements and were reunited with their families.
The cultural outreach programs have expanded to the American Indian and Hispanic communities. Many American Indian families have attended training sessions, some have graduated from the programs, and about 12 parents have gone on to participate in the Partners program.
In 2000, focus groups were held in the American Indian and Hispanic communities. The focus group results showed a definite interest among some parents to form a Family Support Council.
As part of a subcontract with Oregon health Sciences University (OHSU) Self Determination Center, four replication meetings were in held in 1998 and 1999 for emerging leaders in the African American and American Indian communities. As a result, cultural outreach efforts were fostered in 10 states and the District of Columbia.
Partners Graduate Workshops
Approximately 24 students (equal numbers of students with and without disabilities) participated each year in the Youth in Government program, a model program for young adults that offers practical learning experiences on how the three branches of state government work. One student with a disability became the GCDDs representative on the state Transition Leadership Committee.
Approximately 70 students each year participated in Service Treks, an outdoor camping and service learning experience. This four-day program, using an "outward bound" approach, challenged youth with and without disabilities to reach beyond their current comfort levels to learn more about their capabilities and the world around them.
The GCDD also supported the development of a Youth Leadership curriculum that is being replicated throughout the YMCA in other states. The curriculum is a hands-on guide for creating a youth leadership program, building on the need for young adults to identify with peer groups, develop positive friendships, and serve their community. Through participation in the Youth Leadership program in Minnesota, students have maintained friendships with their peers throughout middle school and into their high school years. Some schools are now accepting community service, performed through the Youth Leadership program, as credit toward high school graduation.
Advocacy Tools and Contexts
General guides for advocacy and social change work. In 1989, a community organizing manual, Action, This Means War!, was developed. In 1994, Making Your Case updated this publication by drawing on the perspectives of legislators in terms of what works to influence public policy change and understanding the process.
Checklists related to specific issues and situations. From 1987 to 1993, the GCDD developed checklists for quality individual plans, individual education plans, school integration, and family support. Read My Lips, a resource guide of activities and checklists using a person centered planning approach, looked at five ways of helping to increase the freedom of choice for people with developmental disabilities. In 2001, this guide was revised, updated, and titled Its My Choice.
Specific guides to influence change on specific issues. The GCDD developed information packets on the Medical Assistance Prior Authorization Program, Rehabilitation Act Reauthorization, the Early Childhood Special Education Program, and Family Support. The Action, This Means War! Manual was used for passage of Medicaid reform measures and the Americans with Disabilities Act.
In 1992, the Deputy Commissioner of the Department of Human Services appointed a study group to "review the current structure under which developmental disabilities services are provided and to review costs." The study group sought input from Minnesotans through a series of town meetings. The town meetings are contained in the 1992 edition of Minnesotans Speak Out!; a second edition followed in 1997.
Projects of National Significance Self Determination and Family Support
The Family Support project between 1992 and 1994 created resources about family support and developed a constituency for change among families, people with disabilities, and state governments. Twenty-six states signed on to national family support legislation and a national repository for family support resources was developed.
The GCDDs strategies for 2001 to 2006 carry on the momentum that began in the 1990s with the Leadership priority.
Partners in Policymaking®
COMMUNICATIONS AND TRAINING
CUSTOMER FOCUS AND QUALITY IMPROVEMENT
Our county now has family support because I brought the