DEVELOPMENTAL DISABILITIES THREE-YEAR STATE PLAN Fiscal Years 1995-1997 State of Minnesota Prepared and Submitted by the Governor's Planning Council on Developmental Disabilities Minnesota Department of Administration Debra Rae Anderson, Commissioner Department of Administration Paul Odland, DDS; Council Chairperson Colleen Wieck, Ph.D. Council Executive Director Council Approved: August 3, 1994 Submitted: August 15, 1994 CONTENTS Introduction Section 1) Developmental Disabilities: Definitions and Impact 1.1 Definition of Developmental Disabilities 1.1.1 The Federal Definition of Developmental Disability 1.1.2 Minnesota's Application of the Federal Definition 1.2 Minnesota's with Developmental Disabilities 1.3 The Impact of Developmental Disabilities on Individuals, Families and Communities in Minnesota 1.4 The Purpose of Federal Assistance through the Developmental Disabilities Basic State Grant Program Section 2) The Governor's Planning Council on Developmental Disabilities/Department of Administration 2.1 The Governor's Planning Council on Developmental Disabilities 2.1.1 Mission and Mandate 2.1.2 Membership 2.2 The Administering Agency for the Developmental Disabilities Council Section 3) The State Context 3.1 The Environment in Minnesota 3.2 The Scope of Services for Persons with Developmental Disabilities --Protection and Advocacy --State Departments and Agencies --University Affiliated Program --Federal Programs Section 4) Plan Review and Revision 4.1 Plan Review Process 4.1.1 Review of Statewide Service Delivery and Other State Plans 4.1.2 Review of Existing Priority Area 4.2 State Plan Revisions 4.2.1 The Priority Area 4.2.2 Goals and Objectives 4.2.3 Grant Funds Available Tables 5 and 6: Budget Section 5) Assurances Page i INTRODUCTION A state plan is required by the Developmental Disabilities Assistance and Bill of Rights Act of 1994 (Public Law 103-230), Part B, "Federal Assistance to State Developmental Disabilities Councils." Under this Act, federal funds are made available to states for the following purpose: ...to promote, through systemic change, capacity building, and advocacy activities. . .. the development, of a consumer and family-centered, comprehensive system, and a coordinated array of culturally competency services, supports, and other assistance designed to achieve independence, productivity, and integration and inclusion into the community for individuals with developmental disabilities. [Sec. 121] The plan, once approved by the Secretary of the Department of Health and Human Services, provides the basis upon which a state will participate in programs and activities under Title II, Part B of the Act. The state of Minnesota's Three-Year Plan covers the period of October 1, 1994 through September 30, 1997. It builds on three previous documents: 1) 1990 Report, The Heart of Community is Inclusion, required by the Developmental Disabilities Assistance and Bill or Rights Act, reviewed the dynamics of eligibility in Minnesota, the findings of a consumer satisfaction survey, the insights from testimony at public hearings, and a series of recommendations. 2) State of Minnesota Three-Year Plan, October 1, 1991 through September 30, 1994, presented a review of the existing service delivery system for the provision of services to persons with developmental disabilities and their families, and the priority areas selected by the Minnesota Governor's Planning Council on Developmental Disabilities: 3) Minnesota's Speak Out: A Summary of Town Meetings Held Throughout Minnesota on Developmental Disabilities Issues, (November 1992), described what Minnesota's wanted for themselves, their families, and their communities, with recommendations for systems change, including: individualization, empowerment, leadership, quality assurance, equitable distribution and availability of services, and adequate supports to individuals and families. 1 SECTION ONE DEVELOPMENTAL DISABILITIES: DEFINITIONS AND IMPACT In this section "developmental disability" is described and defined in terms of the number of Minnesota's with developmental disabilities: how disabilities affect the lives of individuals. families. and the community where they live; and the intended impact of federal assistance through the Developmental Disabilities Basic State Grant Program. 1.1 DEFINITION OF DEVELOPMENTAL DISABILITIES This document is about the lives and futures of people. The primary focus is people with developmental disabilities; but the plan also concerns everyone who lives, learns, works, and belongs in the community of Minnesota. "Developmental disabilities" is a term that describes the effects of impairments on people's lives. It describes neither the people nor their lives. Our concern is with the people whose lives are affected by developmental disabilities. The most important fact about people with disabilities is that they are people with the same basic needs as others. They have the same rights, freedoms, and opportunities. Without special assistance, some people cannot take advantage of their basic rights and the opportunities our community offers; but with help, all things are possible. Congress has described the realities faced by people with developmental disabilities: In 1993 there were more than three million individuals with developmental disabilities in the United States; Disability is a natural part of the human experience and in no way diminishes the right of individuals with developmental disabilities to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of American society; Individuals with developmental disabilities continually encounter various forms of discrimination in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and public services; There is a lack of public awareness of the capabilities and competencies of individuals with developmental disabilities; Individuals whose disabilities occur during their developmental period frequently have severe disabilities which are likely to continue indefinitely; Individuals with developmental disabilities and their families often require specialized lifelong assistance, provided in a coordinated and culturally competent manner by many agencies, professionals, advocates, community representatives, and others to eliminate barriers and to meet the needs of such individuals and their families; A substantial portion of individuals with developmental disabilities and their families do not have access to appropriate support and services from generic and specialized service systems and remain unserved or undeserved; Family members, friends, and members of the community can play a central role in enhancing the lives of individuals with developmental disabilities, especially when the family and community are provided the necessary services and supports; and The goals of the Nation properly include the goal of providing individuals with developmental 2 disabilities with the opportunities and support to: a. Make informed choices and decisions; b. Live in homes and communities in which such individuals can exercise their full rights and responsibilities as citizens; c. Pursue meaningful and productive lives; d. Contribute to their family, community, State, and Nation; e. Have interdependent friendships and relationships with others; and f. Achieve full integration and inclusion in society. [Public Law 103-230, the Developmental Disabilities Assistance and Bill of Rights Act, 1994, Section IOl(a)] 1.1.1 THE FEDERAL DEFINITION OF DEVELOPMENTAL DISABILITY Developmental disabilities result from severe chronic mental and/or physical impairments which occur at an early age. The impairments are likely to continue indefinitely, and have a pervasive effect on an individual. The Developmental Disabilities Assistance and Bill of Rights Act of 1994 (Public Law 103-230), defines a developmental disability as: "A severe, chronic disability of an individual 5 years of age or older that-- is attributable to a mental or physical impairment or combination of mental and physical impairments; is manifested before the individual attains age 22; is likely to continue indefinitely; results in substantial functional limitations in three or more of the following areas of major life activity: self care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency; reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, supports, or other assistance that are lifelong or extended duration and are individually planned and coordinated, except that such term, when applied to infants and young children means individuals from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided. " [Section 103(8)] .11.2 MINNESOTA'S APPLICATION OF THE FEDERAL DEFINITION The Governor's Planning Council on Developmental Disabilities uses the federal definition in its Requests for Proposal and expires grant recipients to meet that definition in implementing grants. 1.2 MINNESOTA'S WITH DEVELOPMENTAL DISABILITIES Approximately 70,000 Minnesota's live with a developmental disability. The Minnesota Governor's Planning Council on Developmental Disabilities uses the figure of 1.6 percent of the state's population (4,375,099 in 1990) based on various studies of prevalence. 1.3 THE IMPACT OF DEVELOPMENTAL DISABILITIES ON INDIVIDUALS, FAMILIES, AND COMMUNITIES IN MINNESOTA Definitions of developmental disabilities might suggest that the major impact is in terms of the 3 challenges the disability represents to the individual and family. Increasingly, however, we have recognized the impact of a different and powerful dynamic. We have learned that the responses of society generally, and human services particularly, have a profound impact on individuals with developmental disabilities, their families, and communities. Historically, society has set people with disabilities apart as different and less than capable. These exclusionary practices have fundamentally handicapped people, and disabled communities. The patterns have been systematic: Children grow up as strangers in their neighborhoods. Their education and recreation take place apart from their neighborhood and potential friends. Families go without support, or the support offered somehow suggests the family is in crisis. Young people and adults are seen as "unemployable" and incapable of contributing to the social and economic life of the many communities in which they live. When children and adults can no longer live at home with their families, they are placed in residential facilities. They live with groups of people with disabilities, and the groups are seen as different. Thus, people and organizations in our communities learn that special services are needed and ordinary citizens can not help "these people. These practices give rise to exclusion and exile. Over time, our services have been concerned with assisting people to return to and venture into community. For years, preparing and training people with developmental disabilities for the community actually meant keeping them apart until they were "ready. " Few were ever deemed "ready". Many were trapped in segregated settings. To compound the problem, the community was not always ready, willing and able to welcome these missing people. In many cases, the community did not know people were even missing. People with developmental disabilities had been kept apart. first for care and treatment, then for training. The community often forgets that people with developmental disabilities are a natural Dart of our lives. At times, the welcoming and support of community was heartfelt. Good people did not see a disability. They saw a fellow citizen, a neighbor, a parishioner, a student; but at times, the response was hurtful. Much has changed over the decades. Developmental disabilities will continue to challenge individuals, families, and communities. Together, we are getting better at meeting the challenge. The changing reality in Minnesota, and our changing vision for the future, is one of support and participation. The guiding concepts and principles for enabling people with developmental disabilities to achieve increased independence, productivity, and integration in the community must include: Neighborhoods and communities that include diverse people rather than exclude specific members. Each person is a unique individual, having worth, regardless of what the degree of disability. All communities depend on the capacity of people, their fullness and possibility. Community is built upon the capacity of individuals served and not on needs. Support will be provided so that people with developmental disabilities can participate in the same settings used by other people. For children, this means supporting families whether natural, adoptive, or foster; all children belong in families. For adults, this means developing the services and supports they need to live in real homes, work in real jobs in typical work settings, and to participate in regular community activities along with family members, neighbors, and friends. The development of good interpersonal 4 relationships is basic to healthy living. [From the Mission Statement of the Minnesota Governor's Planning Council on Developmental Disabilities.] 1.4 THE PURPOSE OF FEDERAL ASSISTANCE THROUGH THE DEVELOPMENTAL DISABILITIES BASIC STATE GRANT PROGRAM The purpose of the Developmental Disabilities Assistance and Bill of Rights Act is to assure that individuals with developmental disabilities and their families have access to culturally competent services, supports, and other assistance and opportunities that promote independence, productivity, and integration and inclusion into the community. Statement of Policies and Principles: In the re authorization of the Developmental Assistance and Bill of Rights Act Amendment of 1994, Congress provided a statement of policy for the country: It is the policy of the United States that all programs, projects, and activities receiving assistance under the Developmental Disabilities Act shall be carried out in a manner consistent with the principles that: 1) individuals with developmental disabilities, including those with the most severe developmental disabilities, are capable of achieving independence, productivity, and integration and inclusion into the community, and the provision of services, supports and other assistance can improve such individuals ability to achieve independence, productively, and integration and inclusion; 2) individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individual and their families receive and play decision making roles in policies and programs that affect the lives of such individuals and their families; 3) individuals with developmental disabilities and their families have competencies, capabilities and personal goals that should be recognized, supported, and encouraged; 4) services, supports, and other assistance are provided in a manner that demonstrates respect for individual dignity, personal preference, and cultural differences; 5) communities accept and support individuals with developmental disabilities and are enriched by full and active participation and the contributions by individual with developmental disabilities and their families; and 6) individuals with developmental disabilities have opportunities and the necessary support to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, community, State, and Nation. [Section 102] 5 SECTION TWO THE GOVERNOR'S PLANNING COUNCIL ON DEVELOPMENTAL DISABILITIES MINNESOTA DEPARTMENT OF ADMINISTRATION 2.1 THE GOVERNORS PLANNING COUNCIL ON DEVELOPMENTAL DISABILITIES 2.1.1 MISSION AND MANDATE Our mission is to work toward assuring that persons with developmental disabilities receive the necessary support to achieve increased independence, productivity, and integration and inclusion into the community. The Governor's Planning Council on Developmental Disabilities was established in December 1971 in accordance with the authority prescribed to the Governor of Minnesota by the Developmental Disabilities Assistance and Bill of Rights Act [Section 122(b)(A)]. The Developmental Disabilities Assistance and Bill of Rights Act requires state Developmental Disabilities Councils "to promote, through systemic change, capacity building, and advocacy activities, the development of a consumer and family-centered comprehensive system and a coordinated array of culturally competent services, supports and other assistance designed to achieve independence, productivity, and integration and inclusion into the community for individuals with developmental disabilities. " [Section 124(a)]. Minnesota's Council is charged with supervising the development of a state plan describing the quality, extent, and scope of needed services being provided or to be provided to persons with developmental disabilities. The Council monitors and evaluates the implementation of the state plan, and reviews state services plans for persons with developmental disabilities. (Executive Order 9 1 -29) The Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1994 (P. L. 103- 230) outlines specific responsibilities for the Council in the following areas: Systemic change, capacity building, and advocacy activities; Examination of priority areas; State plan development, implementation, and monitoring; Outreach to individuals and families; Training; Supporting communities; Interagency collaboration and coordination, including coordination with related councils, committees, and programs; Barrier elimination, systems design, and citizen participation; and Public education and coalition development, including training in self-advocacy, educating policymakers, and citizen leadership skills. [Sec. 124, (c)] 2.1.2 COUNCIL MEMBERSHIP The Minnesota Governor's Planning Council on Developmental Disabilities is composed of 27 members appointed for three-year terms with a maximum of two consecutive terms. Each member is appointed by the Governor from among the residents of the state of Minnesota. The Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1994 (Section 124) requires each state Council" to include in its membership representatives of the principal state agencies 6 responsible for administering federal funds under: the Rehabilitation Act of 1973 (i.e., the Division of Rehabilitation Services of the Minnesota Department of Economic Security) the Individuals with Disabilities Education Act (i. e., Special Education Section of the Minnesota Department of Education) the Older Americans Act (i.e., Minnesota Board of Aging, Department of Human Services) Title XIX of the Social Security Act (i. e., the Minnesota Department of Human Services) Higher education training facilities and University Affiliated Program(s) (i. e., the Minnesota Institute on Community Integration at the University of Minnesota); and the state protection and advocacy system (i. e., the Minnesota Disability Law Center). Other representation comes from local agencies, non government agencies, and private nonprofit groups concerned with services for individuals with developmental disabilities. The membership of the Council is required to represent people with developmental disabilities and their families. Not less than one-half of the membership of the Council must consist of persons with developmental disabilities, or parents/guardians and immediate relatives. Of this 50 percent, at least one-third must be persons with developmental disabilities. Another one-third (at least) must be immediate relatives or guardians of persons with mentally impairing developmental disabilities, one of whom must be an immediate. relative or guardian of an institutionalized or previously institutionalized person with a developmental disability, or an individual with a developmental disability who resides or previously resided in an institution, . Individuals with developmental disabilities or their family representatives cannot be an employee of a State agency or managing employee of other organizations receiving funds or providing services under the Act. Council Members as of July 1994 are as follows: Paul Odland. DDS, Chair Dawn Anderson Catherine Atneosen Laura Bloomberg Joanne Bokovoy Stephen P. England, MD.. William (Bill) Everett Mary L. Golike Karen Gorr Norena A. Hale. Ph.D. Stephen Hamer, M.D. Thomas (Jerry) Gerald Hayes Lowell E. Hendrickson Anne L. Henry Andrew Hommerding Byron Johnson, M.D. Karol Johnson Paul R. Kenworthy, CFP Robert (Bob) Meyer Debra G. Niedfeldt Bernadine D. Nolte Donna Petersen, SC. D. Jerry Pouliot Kathy Stiemert Dean F. Thomas Kirk Williams Levi Young The state provides assurance that federal membership requirements have been met. 7 2.2 THE ADMINISTERING AGENCY FOR THE DEVELOPMENTAL DISABILITIES COUNCIL The Developmental Disabilities Assistance and Bill of Rights Act of 1994 requires the State Council (i.e., the Minnesota Governor's Planning Council on Developmental Disabilities) to indicate the state agency "which, on behalf of the state, shall receive, account for, and disabuse funds..., and shall provide required assistance and other administrative support services. " (Section 122) The State Legislature and Governor have designated the Minnesota Department of Administration as the state administering agency. This agency is responsible for providing staff and other administrative assistance to the Council. The Council is staffed by Colleen Wieck, Audrey Clasemann , Suzanne Dotson, RoseAnn Faber, Mary Jo Nichols and Roger Strand. 8 SECTION THREE THE STATE CONTEXT In this section, we describe the environment in which programs for individuals with developmental disabilities in Minnesota operate: the scope of services for individuals with developmental disabilities; and the state plans which affect them. Requirement: Comprehensive Review and Analysis. The plan shall contain a comprehensive review and analysis of the extent to which services and supports for individuals with developmental disabilities and their families. Such review and analysis shall include: A. a description of the services, supports and other assistance being provided to or to be provided to, individuals with developmental disabilities and their families under such other federally assisted State programs, plans, and policies that the State conducts and in which individuals with developmental disabilities are or may be eligible to participate, including programs relating to education, job training, vocational rehabilitation, public assistance, medical assistance, social services, child welfare, maternal and child health, aging, programs for children with special health care needs, housing, transportation, technology, comprehensive health and mental health, and such other programs as the Secretary may specify; (and) B. a description of the extent to which agencies operating such other federally assisted State programs pursue interagency initiatives to improve and enhance services, supports, and other assistance for individual with developmental disabilities. [Section 122(c)(3)(A) and (B)]. 3.1 THE ENVIRONMENT IN MINNESOTA The challenge of this decade is to build truly inclusive communities. Such communities will provide increased acceptance for all people. support to live in the community. hope that lives will improve, and love for one another. Communities will want each individual to have the quality of life he or she deserves. Since 1983, the Minnesota Governor's Planning Council on Developmental Disabilities has kept track of developments, charted a course of action, and had an impact on these changes. The 1990 Report: What we described and analyzed in the past is still a reality today. There is still a tremendous gap between what we know to be possible and desirable for people with developmental disabilities and their families, and what they experience daily. Minnesota's and others have embarked on a number of new endeavors which have a promising future of inclusion. The values and reasoning which underpin what we described in 1987 as a "new way of thinking" are increasingly determining what we do, and our judgment of how well we are doing. (2990 Report, p. 10) There is a new way of thinking about how, where, and with whom people with developmental disabilities can live, learn and work. This new way of thinking involved a shift from removing people from their families' homes to keeping them with their families, and from a preoccupation with preparation, care and treatment to a concentration on supporting participation, building on capabilities, adapting environments, and building relationships. This new way of thinking means assisting individuals and families in identifying what is important to them, and empowering them with decision-making and spending authority to act upon those choices. (1990 Report, p. 12) The 1992 Town Meetings held throughout Minnesota on developmental disabilities issues identified a dominant theme: We have a lot to be proud of and much remains to be done! At town meetings and in letters and phone calls, people spoke of progress that we have made in Minnesota over the last decade. They spoke of a new vision of how life should be for people with developmental disabilities. And, they spoke of the fact that the vision has yet to be realized for many, if not most, Minnesota's with developmental disabilities. They described how people with developmental disabilities often have to rely on services which do not meet their needs but are the only options available. They despaired over the fact that our gains are at risk, and what we have built is being eroded. (Minnesota's Speak Out, p.3) Current Trends. There continue to be signs that the vision, at least, guides developments: Federal and state initiatives in health and human services reforms are progressing with relatively great speed. Changes have been made in the state-operated regional treatment center system. Of the centers sewing individuals with disabilities, one center closed. Half of the current residents in the largest center will be moved into the community. All other centers continue to downsize toward closure. Larger Intermediate Care Facilities for Persons with Mental Retardation (ICFS-MR) with capacities over 12 are downsizing and/or closing. The inclusion of students with disabilities in general education classrooms continues to increase. The "Home of Your Own" and "People First" self advocacy movements are growing in Minnesota. More people are living independently with appropriate supports, many through waivered services. Supports to families are increasingly available. These include services such as respite care offered through generic community resources. The implementation of the Americans with Disabilities Act is underway. There is improved acceptance by and awareness among the general public of the needs and rights of persons with disabilities. Communication media are increasingly available in a variety of formats, such as closed captioning, relay telecommunication services, and use of alternative formats in printed materials. There is increased accessibility to public services and resources. Increased attention by policymakers has expanded resources for early intervention and prevention activities, such as: 1. The 1994 Minnesota Legislature approved an implementation plan to apply for Year-5, under Part H of P.L. 102-119, Individuals with Disabilities Education Act, which will strengthen interagency efforts to serve children from birth through age two and their families. 2. National and state agencies and organization have increased efforts to prevent disabilities through public education and awareness about creating a lead free environment and how to prevent Fetal Alcohol Syndrome (FAS) or Effects (FAE); and to make available appropriate immunizations for all young children. Use of new technology is becoming a way of life in the daily lives of individuals with disabilities, liberating them in the areas of mobility/transportation, communications, learning/education, employment and access to community activities. Through improved standards of living and medical technology, new populations are emerging such as children with complex medical needs and people who are aging. More people with disabilities are entering the labor market through supported employment programs. Through national and state legislative mandates, individuals and families are being assisted in planning for their futures, helping them to make the major transition from school to adulthood. Greater emphasis is being placed on strengthening and providing needed supports to families. 10 3.2 THE SCOPE OF SERVICES FOR PERSONS WITH DEVELOPMENTAL DISABILITIES The following section describes the many services in Minnesota which include a focus on persons with developmental disabilities, and specific services for persons with developmental disabilities in Minnesota. They are grouped as follows: Protection & Advocacy Minnesota Disability Law Center State Agencies Minnesota Department of Human Services MN Department of Health MN Department of Education MN Department of Economic Security MN Department of Trade & Economic Development MN Housing Finance Agency MN Department of Transportation MN Technical College System Office of the Ombudsman for Mental Health & Mental Retardation MN State Council on Disability MN Governor's Advisory Council on Technology For People with Disabilities Telecommunications Access for Communication- Impaired Persons Board University Affiliated Program The Institute on Community Integration, University of Minnesota Federal Programs United States Department of Housing & Urban Development Social Security Administration PROTECTION AND ADVOCACY 3.2.1 MINNESOTA DISABILITY LAW CENTER Federal law requires that each state have a system to protect and advocate for the rights of people with developmental disabilities. Legal Advocacy for Persons with Developmental Disabilities is a part of the Minnesota Disability Law Center of the Legal Aid Society of Minneapolis. The Governor has designated this agency as the Minnesota Protection and Advocacy agency as required by the Developmental Disabilities Act. Law Center services include: direct legal representation of people with disabilities, legislative and administrative advocacy, and training and education for individuals with disabilities, family members, and professionals. A major focus of legal advocacy is to assure that quality community services are available for people with developmental disabilities. In 1993. direct legal services were Provided to 703 people with developmental disabilities. The Client Assistance Project provides information, support and advocacy services to clients and potential clients of the Division of Rehabilitation Services, State Services for the Blind, Centers for Independent Living, and Projects with Industry. This is to ensure that they receive the services and benefits available to them as provided by the Rehabilitation Act. As required by Section 112 of the Rehabilitation Act of 1973, the Governor designated the Legal Aid Society of Minneapolis, Inc. to provide this type of assistance. The Minnesota Mental Health Law Project is a legal assistance project to protect and advocate 11 for persons with mental illness in Minnesota. The Governor has designated the Project as the Minnesota Protection and Advocacy agency for persons with mental illness. The Project focuses on problems related to abuse and neglect, lack of appropriate individualized treatment or discharge plans, improper seclusion or restraints, violation of rights to confidentiality and privacy, and lack of a safe and healthy environment. Protection and Advocacy for Individual Rights (PAIR) is a new service to address the legal needs of individuals with disabilities who are not eligible for other advocacy services listed above. Interagency Initiative--Technology. In order to provide technical assistance and advocacy services to assist persons with disabilities obtain needed assistive technology and related services, the Disability Law Center has contracted with the STAR (A System of Technology to Achieve Results) program of the Minnesota Governor's Advisory Council on Technology for People with Disabilities. STATE DEPARTMENTS AND AGENCIES 3.2.2 MINNESOTA DEPARTMENT OF HUMAN SERVICES The Department of Human Services (DHS) is a state agency directed by law to assist those citizens whose personal or family resources are not adequate to meet their basic human needs. It works in partnership with the federal government, counties, and other public, private and community agencies throughout Minnesota. . DHS is responsible for planning, administering, and coordinating the state's social services and public assistance programs. It delivers few services. In Minnesota, the state supervises human services, while the counties administer them. Eighty-seven counties operate most programs. The various divisions of DHS set rules, based on state statutes, that set basic standards for the provision of services to diverse populations. 1) Health Care Administration--DHS a) Home and Community Based Services Division Community Alternative Care Program (CAC) is a Medicaid waiver program that provides home and community services for persons with chronic illness or disability who are eligible for Medicaid, based on their own income and assets. Medical Assistance (MA) is Minnesota's Medicaid program. Recipients of CAC services are eligible for all of the services under regular MA. These include: case management, family counseling and training, foster care, home modifications, homemaker, extended home health services, transportation, respite, prescription drugs, and supplies and equipment. At any time, up to 200 individuals can be eligible to receive Community Alternative Care Program services. Community Alternatives for Disabled Individuals (CADI is a Medicaid waiver that provides home and community services for persons with chronic illness or physical disability who are at risk of placement in a nursing facility. To be served by CADI, individuals must be eligible for Medical Assistance based on their own income and assets. Services include: case management, family counseling and training, foster care, adaptations to home/vehicle, homemaker, extended home health services, respite, adult day care, supplies and equipment, assisted living, residential care services, independent living skills, and home delivered meals. Traumatic Brain Injury (TBI) Program provides statewide regional consultation on case management resources for individuals who have sustained a brain injury. Assistance is provided to survivors to gain access to health and human services to remain in the community, while ensuring the accessible and appropriate use of Medical Assistance services. In Minnesota, there are approximately 10.000 occurrences of traumatic brain injury per year. About 1.000 of this number experience a long term disability. The TBI Program estimates that only one in twenty survivors of TB1 is receiving appropriate rehabilitation services. The TBI Waiver is a Medicaid waiver that provides home and community services for survivors of brain injury who under age 65 and experience significant behavioral, emotional, or cognitive problems related to the injury. Recipients of TBI Waiver services are eligible to receive the full range of services covered by MA as well as special services that are necessary to prevent nursing home placement. The waiver was recently amended to include neurobehavioral hospital, level care. Services 12 include: case management, adult day care, structured day program, Supplied equipment not covered by MA, non-medical transportation, home delivered meals, night supervision, residential care, and assisted living. Medical Assistance (MA) helps people pay for their medical care. While the person is eligible, all or part of their medical bills can be paid by MA. Many factors, including income and assets, are involved in determining eligibility. Medical Assistance Home Care Services cover medically necessary services in the home. These include: private duty nursing, personal care, skilled nurse and home health aide visits, medical supplies and equipment, and therapies. All private duty nursing and personal care services, and other limited services, must receive prior authorization by DHS. Children's Home Care Option (TEFRA) is a family support program for children with disabilities who live with their families. If a child is eligible for Medical Assistance, all services available under the regular Medicaid program (for instance, home health services, prescribed drugs, medical transportation, and insurance premium reimbursement) are available. In 1993. 2.800 families utilized the TEFRA Option. MinnesotaCare provides subsidized health coverage to uninsured families with children. It was established under Minnesota Chapter 345, of 1993. Funds permitting, single adults and families without children were covered starting on July 1, 1994. Premiums are on a sliding scale based on income, family size, and number covered. For persons with low income, there is a state subsidy towards the premium. There are no exclusions for preexisting conditions. Coverage includes primary and preventive care, certain dental services, mental health, chemical dependency, and inpatient hospital services. More than 62,000 Minnesota's (over 37,000 children and over 25,000, adults) are enrolled. Enrollment is growing at a rate of approximately 2,000 people per month. Rural enrollment is twice that of the seven-county metro area. b) Community Mental Health and State Operated Services Administration Mental Health Division is the State Mental Health Authority (SMHA). State law and federal regulations assign the following responsibilities to the SMHA: establishing, monitoring, and evaluating statewide policy for mental health service delivery and administration; coordinating development of statewide and local mental health system plans; developing new programs of service delivery; developing and disseminating standards for service programs, service delivery, and administration; providing technical[ assistance to local administrative agencies; allocating funds to local systems and demonstrating the accountability of these systems to the state legislature and to federal funding sources. In addition, the SMHA operates five regional treatment centers (RTCS), a forensic hospital, and a nursing home that serve persons with mental illness. State law assigns the responsibility of day-to-day administration of local community mental health systems to county boards of commissioners. Comprehensive Mental Health Act: The state legislature passed the Comprehensive Adult Mental Health Act in 1987, and the Comprehensive Children's Mental Health Act in 1989. Both acts define an array of services to be implemented in each county. The emphasis is on the development of community services. Services under the adult act are targeted to adults with serious and persistent mental illness (SPMI) or acute mental illness. Services under the children's act are for children with serious emotional disturbance (SED). The children's act also requires that services have a family focus; and that mental health services be integrated across the health, mental health, educational, social service, and correctional systems. Prospective Changes in the organizational structure of the public system include: . a reduced role for the SMHA as a provider of inpatient treatment; an increased role for Consumer organizations and local advisory councils; . the creation of local children's mental health collaborative; and . an increased role for the State Coordinating Council for children's mental health. The SMHA is in the process of converting the role of its regional treatment centers from inpatient services to alternative (community) mental health services, or to other roles. Last year, the Legislature 13 passed a law to convert a 200 bed center from adult mental health inpatient treatment to corrections, and transfer most of the funding to community alternatives. At the same time, several pilot projects are underway to test the feasibility of converting the RTCS to provide crisis intervention and community mental health services. Federal block grant funds have assisted the establishment of a statewide consumer network. For the purpose of integrating children's services, the state has provided planning grants to collaborative that are formed under agreements among the various local systems serving children. These collaborative will submit integrated services and funding plans to the SMHA in late 1994, It is estimated that 3.3 percent of all those receiving mental health services have a "dual diagnosis, " persons with mental illness and chemical dependency, or developmental disability. State Operated Community Services for Persons with Developmental Disabilities (SOCS), were established to implement 1989 legislation [MS Chapter 282, article 6]. This law set in motion a long-term restructuring plan for the RTCS. The plan addressed the services needed for persons with mental illness, chemical dependency, and developmental disabilities. By the end of the 1994/1995 biennium. the following expansion of state operated services for persons with developmental disabilities are anticipated: 64 residential State Operated Community Services for 286 individuals; 16 Day Training and Habilitation SOCS serving 300 individuals: and 4 crisis respite care SOCS serving 200 individuals per war. c) Family Self-Sufficiency Administration Quality Initiatives Division monitors the quality of eligibility determ-inations, assesses administrative processes, provides technical and corrective action assistance, and promotes fraud prevention and control services. The Assistance Payments Division provides income maintenance through cash assistance and food stamps. Cash assistance programs include Aid to Families with Dependent Children, General Assistance, Minnesota Supplemental Aid, and Work Readiness. The Division coordinates the delivery of services through the development of state plans, training, and the provision of written instructions. The Division proposes and evaluates new services and legislative initiatives. d) Social Services Administration i) Aging and Adult Services The Minnesota Board on Aging is committed to serving 715,000 older Minnesota's by assisting them in living independent, meaningful, dignified lives in their own homes or places of residence. The emphasis is on reducing isolation and preventing untimely or unnecessary institutionalization. Fourteen Area Agencies on Aging plan and administer programs and services for older people. The Minnesota Board on Aging approves and funds the Area Plans developed by Area Agencies. The Aging network in Minnesota provides services in the following major categories: o Social Services, o Nutrition Services, o Legal Services, o Senior Centers, o Volunteer Programs, o Office of Ombudsman for Older Minnesota's. Adult Protection Services provides consultation and training on the Minnesota Vulnerable Adult Protection Act and related issues. Deaf and Hard of Hearing Services Division is required by statute to assure that persons with hearing loss have access to a full array of human services available in Minnesota. The Division manages eight Regional Service Centers. The Centers serve as central entry points for human services and distribute adaptive telephone equipment to persons with communication and mobility needs. The Division is also responsible for statewide planning and policy development relative to the human service needs of people who are deaf or hard of hearing. Additional services include: contracts for interpreter referral, specialized mental health services, and services to people who are deaf-blind. In Minnesota, there are an estimated 252,000 people who are hard of hearing, plus an additional 39,000 people who are deaf. One out of 10 people have a hearing loss. Also, one out of every 4 14 persons age 65 or older have a hearing loss. ii) Family and Children Services Division Title XX of the Social Security Act-Block Grants to States for Social Services is a major funding source for the provision of social services in Minnesota. In addition to these federal funds, local levies and state funds are provided under the Community Social Services Act. Each county is required to develop a biennial Community Social Services Plan indicating how it intends to serve various target populations. The most common categories of individuals and services under Title XX are: 1) families in need of child care; 2) individuals with a chemical dependency; 3) persons with developmental disabilities; 4) persons with mental illness; 5) services to adults; and 6) child/family services. Specific services available to individuals with developmental disabilities and their families are: Information & Referral; Community Education/Prevention; Pre-Petition Screening/Hearing; Transportation; Homemaking Services; In-Home Family Support; Semi-Independent Living Services; Family Support Program; Supported Living Services-Adult; Supported Living Services-Child; Adult Day Training & Habilitation; Community Residential Facilities; Respite Care; Case Management (Rrde 185); Case Consultation; and Public Guardianship. Over half of the $8,453,929 Title XX funds in 1994 were dedicated to Supported Living Services for Adults, Adult Day Training and Habilitation, and Case Management (Rule 185). In addition, the Children and Family Services Division supervises: Foster Care Program oversees the county programs involving approximately 11,000 ( 1992) children living in licensed foster homes. In 1993, there were 1.050 persons with developmental disabilities living in foster homes --205 (19.5 percent) children under age 18. and 845 (80.5 percent adults. Adoption Assistance Program provides financial reimbursement and subsidies for expenses related to a child's special needs. This federally mandated program is designed to facilitate the adoption of children with special needs, including children with developmental disabilities, who have been placed under the guardianship of the Commissioner of Human Services or a licensed child-placing agency. Families who receive adoption assistance are eligible for the benefits of Medical Assistance, a monthly maintenance payment, and assistance in making necessary alterations to the home. As of January 1994. there were a total of 1,519 children with special needs enrolled in the Adoption Assistance Program. These children were living in 1,129 family homes. iii) Division for Persons with Developmental Disabilities develops and manages programs to ensure that Minnesota's with developmental disabilities have the appropriate amount, quality and type of supervision, support, training, and other services as needed by the nature/severity of the disability and life's circumstances to promote full citizenship. Services include: Case Management is a service provided by county social service agencies under Minnesota statute. The service is defined as "identifying the need for planning, seeking out, acquiring, authorizing, and coordinating services to persons with mental retardation or other related conditions. [It] include(s) monitoring and evaluating the delivery of the services to, and protecting the rights of, the persons with mental retardation. " (DHS Rule 185). Case management is the cornerstone for obtaining quality services for persons with developmental disabilities and their families. A survey in January 1992 documented that there were 410 case managers in the 87 counties serving 17,281 persons with mental retardation or related conditions. Family Support Program makes cash assistance available for eligible families up to $3,000 Per year for items and services such as: child care, respite care, clothing, medical insurance deductibles, diet, medical transportation, equipment, and medications. In January 1993, 640 families received Family Support Grants, with an average yearly grant of $2.700 per family. Over 200 families were on the waiting list. 15 Home and Community-Based Services. Minnesota obtained a federal waiver in 1985 to use medical assistance funds to purchase home and community support services for persons with developmental disabilities who would otherwise require services of intermediate care facilities for persons with mental retardation. (ICFS/MR). These services are available to families who have children with developmental disabilities and to adults with developmental disabilities. Services a person may receive through the waiver include case management, supported living services, in-home support service, homemaker services, respite care, and physical adaptations to the home. In addition, adults are eligible to receive supported living and day training and habilitation services. The waiver combines federal, state, and county funds. In fiscal year 1990, enhanced rates for waivered services were made available to persons residing in regional treatment centers. The enhanced rate made it possible for counties to relocate RTC residents needing intensive support services to community settings. As of January 1993, 200 people received services under the "Enhanced Fund. " In July 1993. 3,408 persons with developmental disabilities received Home and Community-Based Services. This included approximately 430 individuals living with their families, 589 living with foster families or in an apartment, and 1,951 living in corporate foster homes. Medical Assistance Payments in 1993 for the Family Support Program and Home and Community- Based Waiver Services served 640 families and 3,408 individuals. These Payments were less than the 1992 payments to Regional Treatment Centers where 875 people lived in 1993. Semi-independent Living Services (SILS) supplements county expenditures for the purchase of supportive services for adults who live independently. Services and assistance include: counseling, grooming and hygiene, home maintenance, shopping, instruction, social skills, meal preparation, training, money management, and monitoring. In fiscal year 1992, there were 1.660 individuals receiving Semi-Independent Living Services. Regional Treatment Centers, Nursing Homes, and Community ICFs/MR are congregate care facilities of varying sizes. Regional Treatment Centers: The number of people with developmental disabilities in Regional Treatment Centers has declined as a result of: the requirements of the Welsch Consent Decree and Negotiated Settlement, and development of community-based alternatives prompted by the implementation of the Title XIX Home and Community-Based Waiver. In July 1993. there were 875 individuals with developmental disabilities residing in regional treatment centers, a decline of 2,600 in Nursing Homes: Public Law 100-203 prohibits nursing home placements for people with disabilities except where medically appropriate, or when it was the preferred long term residence for the individual. As a result, each person in a nursing home has been assessed in terms of habilitation services and appropriateness of placement. As of .January 1993, there were 850 Minnesota's with developmental disabilities residing in nursing homes. The Alternative Community-Based Waiver has assisted in the relocation of almost 50 people to more appropriate community settings. Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR): Although many individuals with developmental disabilities live in community group homes (lCFs/MR), the number has decreased due to the Home and Community-Based Waiver program. People have moved to less restrictive settings. The decrease in the number of people living in ICFs/MR is also due to downsizing and/or closure of over 30 community facilities since 1986. In July 1993, there were 4,206 people living in ICFs/MR in Minnesota. a reduction of 416 from the previous year. Of the nearly 3.000 people who receive home and community-based services, about 55 percent Previously resided in either an ICF/MR or a regional treatment center. Day Training and Habilitation Services are operated by not-for-profit vendors under contract with county human service agencies. They are licensed by the Department of Human Services. Primary services include supported employment in integrated community settings with support of a job coach, 16 part-time work, specialized training and use of adaptive technologies to increase independence in work and other settings, and instruction in life-skills. DHS and the Department of Economic Security coordinate efforts to promote supported employment programs. In 1993, there were an estimated 7,575 individuals served by 130 licensed providers in day training and habilitation services. The number of individuals served has increased from 6,811 in 1992. and 6,216 in 1991. The Public Guardianship Office oversees approximately 5,800 wards of the Commissioner of Human Services. Eligible individuals must be 18 years of age or older with a diagnosis of mental retardation. Public guardianship/conservatorship is viewed as the most restrictive form of substitute decision making for an individual. It is sought only in the absence of an appropriate private guardian/ conservator. Acting as guardian, the Commissioner delegates all but the most controversial consents to the county social service agencies. The Public Guardianship Office has final consent in areas primarily related to life ending decisions, research, and areas requiring court orders. e) Finance and Management Administration The Division of Licensing regulates living programs, nonresidential programs, and agency services to children and specified groups of adults with functional impairments or disabilities. Licensing is administered by the Department of Human Services through regular inspection and evaluation to: determine minimum compliance; investigate complaints; provide information and assistance to applicants for licensure; and make licensing compatible with the changing needs of clients by revising licensing laws, regulations, policies, and procedures. The programs for persons with developmental disabilities that are licensed directly by the Division include Community Residential Facilities; Day Training and Habilitation Services; Regional Treatment Centers; Residential-Based Habilitation Services (Waivered Services); Residential Facilities and Services for Persons with Physical Disabilities; and Semi-Independent Living Services . Standards and investigations which require enforcement (rather than licensure) include: . Aversive and Deprivation Procedures for Persons with Mental Retardation or Related Conditions, and . Investigation of Maltreatment of Vulnerable Adults in Licensed Facilities. There are three units in the Division that relate to services to people with developmental disabilities. The Investigation Unit investigates all maltreatment reports in licensed programs under the Vulnerable Adult Protection Act and Maltreatment of Minors Act. The Applicant Background Studies Unit conducts background studies on all direct-contact employees in licensed programs. The Licensing Unit monitors programs to assure compliance with minimum standards. The number of License Holders relating to Developmental Disabilities has declined from 1,991 holders to 1739 holders in 1993. The significant reduction was in Wavier Services --443 holders in 1992 to 368 in 1993. 3.2.3 MINNESOTA DEPARTMENT OF HEALTH Community Health Services System: The Community Health services Act provides for the development and maintenance of an integrated system of community health services in Minnesota operated under local administration. Services are performed and largely funded at the local Community Health Board level. Community Health Services protect and improve the health of people within a geographically defined community by emphasizing services to prevent illness, disease, and disability. This is accomplished by promoting the effective coordination and use of community resources, and by extending health services into the community. The services of Community Health Boards include Family Health, Home Health, Disease Prevention and Control; Emergency Medical Services; Health Promotion; and Environmental Health. Maternal and Child Health Services aims to improve the health status of children and youth, women, and families by providing technical and financial support services to local community health agencies, schools, and voluntary organizations. Clinical services are provided in local health agencies 17 and schools. Services include infant and child health assessment, health maintenance services such as immunizations, health promotion including childhood injury prevention, general health screening, Early and Periodic Screening, Early Childhood Health and Developmental Screening, hearing and vision screening, scoliosis screening and screening for elevated levels of lead. Other specific programs of Maternal and Child Health Services include: The Special Supplemental Food Program for Women, Infants and Children (WIC), and the Commodity Supplemental Food Program (CSFP)-both funded through the U.S. Department of Agriculture. The Human Genetics Program-counseling, consultation, education and diagnostic support regarding people with known or suspected genetic diseases. The Child Health Screening, Health Promotion Unit. The Minnesota Injury Prevention Project-technical support and public education. The Hearing and Vision Conservation Project-early identification, treatment and remediation. Home Health Care Services-assistance to persons who are ill or with disabilities to achieve maximum restoration or maintenance of health, as well as to provide the care needed in cases of terminal illnesses. Minnesota Children with Special Health Needs {MCSHN) provides: 1) reimbursement for diagnostic and treatment services at medical centers and physician offices; 2) diagnostic clinic services where sufficient community resources do not exist; 3) technical consultation to promote the development of coordinated, family-centered, community services as well as statewide systems of care; and 4) support services to families, including advocacy and assistance in locating resources and the most appropriate payment sources. In 1993, 8.620 people were served by Minnesota Children with Special Health Needs. Interagency and Other Initiatives: Part-H of the Individuals with Disabilities Education Act, Early intervention, including development of Individualized Family Service Plans (IFSP) for children ages birth to 3 years, Child Find, Follow- Along programs for high risk infants. Keep In Touch Program, which follows children (graduates from neonatal intensive care) to age three. Combined Program, which forms a partnership with MinnesotaCare (Department of Human Services), under a single enrollment, care authorization, and provider reimbursement process; and interagency agreement with Social Security Administration for identification and referral children potentially eligible for Supplemental Security Income. Design of an ongoing needs assessment system for children and families; Study of number and needs of children considered medically fragile and/or technology dependent; Establishment of a statewide, central information and referral service; Data Utilization and Enhancement grant from SPRANS, which combines efforts from the Information Policy Office, Minnesota Network, Disability Determination Service, Department of Education, Department of Jobs and Training/Head Start, Department of Human Services and the Social Security Administration. The Office of Health Facility Complaints is responsible for receiving, investigating, and resolving complaints from any source regarding services provided by health care facilities, health care providers, and administrative agencies. It is also responsible for assisting residents of health care facilities in the protection of their rights. The Office is specifically responsible for investigating complaints or reports of abuse/neglect of patients or residents in licensed health care facilities, was authorized under the Minnesota Vulnerable Adult Protection Act. Such facilities include nursing homes, hospitals, supervised living facilities, boarding care homes, and state-operated Regional Treatment Centers. Developmental Disabilities Act Requirement/Compliance: ICF-MR Deficiency Reports are routinely sent by the Minnesota Department of Health to the Governor's Planning Council on Developmental Disabilities. These reports are then reviewed and summarized for the Council. 18 3.2.4 MINNESOTA DEPARTMENT OF EDUCATION 1) The Office of Special Education in the Department of Education is the state agency responsible for supervising, coordinating, and monitoring local school districts as they provide special education services to students with disabilities from birth to age 21. Special Education Services are provided under the authority of the Individuals with Disabilities Education Act (P. L. 101-457); Minnesota Statutes 120.03, 120.17, and 124.32, and State Board of Education Rules Chapter 3525. Early Intervention Services: Minnesota has implemented interagency, comprehensive early intervention services for young children with disabilities from birth through age two and their families (in accordance with Public Law 99-457) through the following components: o The Lead Agency-Minnesota Department of Education-is responsible for the general administration, supervision and monitoring of programs and activities relating to early intervention. o The State Agency Committee consists of the Departments of Education, Human Services, and Health. The Year IV Interagency Agreement commits these departments to identify and implement changes in fiscal and program policies for the departments that may be necessary to improve coordination of services to these children and families. The 1994 Minnesota Legislature approved the proposed plan to apply for Year V funding under Part H of Individuals with Disabilities Education Act. Through the State Agency Committee, the departments are committed to coordinating child find activities; establishing a system of data collection and program evaluation; ensuring timely compre- hensive multidisciplinary child and family evaluation; ensuring family focused, multidisciplinary, interagency planning processes; supporting flexible interagency case management services; defining financial responsibilities; defining policy and procedures to resolve intra and interagency disputes; and, detaining interagency policies and procedures for ongoing monitoring and supervision of programs and services. o The Governor's Interagency Coordinating Council on Early Childhood intervention advises and assists the Department of Education and recommends policies to the Governor, Legislature, State Agency Committee, and other Departments. The Council is established by the Governor. o An extensive network of local and regional cooperative efforts have been established, consisting of: a) Interagency Early Intervention Committees (IEICS); and b) regional coordinators who assist school districts, other providers of services, and families. People within this system work toward improved coordination of services model interdisciplinary approaches to early intervention services. Early Childhood Special Education is the responsibility of local school districts. In 1986, Minnesota school districts were mandated by the Legislature to serve all eligible children with disabilities (or at risk of developing disabilities) beginning at birth. The Secondary Vocational Education Unit, Minnesota Department of Education, is the state agency responsible for administering vocational educational programs. Community Education programs provide an opportunity for 1ocal citizens, community schools, agencies and organizations to become active partners in addressing education and community concerns. The most common components include early childhood development, family education, adult basic education, and youth development planning. Interagency Initiatives: o The Interagency Office on Transition Services was established within the Department of Education by the 1985 Minnesota Legislature for the purpose of addressing the needs of students with disabilities as they progress through school and enter postsecondary training, employment, and community living. The Office provides staff to the State Transition Interagency Committee; coordinating personnel training; providing information, consultation and technical assistance to state and local agencies about transition services; assisting agencies in establishing local interagency agreements; and gathering and coordinating information on transition services. School districts are required to establish committees at the local level. In 1993, there were 75 local committees. As required by state legislation, the Individualized Education Plan must address the student's transition needs by grade nine, or age 14. 19 In 1991, the Minnesota Department of Education received a five-year systems change grant for transition planning and coordination from the U.S. Department of Education, Office of Special Education and Rehabilitative Services. This project involves extensive interagency collaboration among many agencies and organizations. Several areas are addressed under this effort: student and family participation, professional development and training, best practices, and follow-up data collection and evaluation. Other areas also include: curricula development, preparation for independent living, information dissemination, and employer training. o Minnesota Deaf-Blind Technical Assistance Project: The efforts and resources from several state agencies are brought together to provide support services for children and youth with deaf- blindness. In 1993, there were 208 children identified as having hearing and vision impairments. Training and technical assistance is made available to professionals and parents. The project also provides direct family support services, such as Children Linking Families events. Resources are made available through the Materials Resource Center. o Minnesota Youth Works, Youth Service: This new program, establish under the Minnesota Youth Works Act and the NationaI and Community Service Trust Act provide youth/young adults with opportunities to be involved in significant community service programs They receive a monthly living allowance and, after successfully completing their service commitment, are eligible for a post-service education award. Community service grants focus on education, public safety, human needs and environment. o Regional Interagency Systems Change (RISC): The RISC Project is sponsored by the Minnesota Departments of Education, Health, Human Services and Economic Security. RISC coordinates the activities of various committees at the regional level relating to early intervention and transition committees, and Iocal coordinating and advisory councils. Focus is upon the coordination of services to families, increasing information, skills, and competencies of personnel, and resolving/mediating disputes between agencies. Table 1 Special Education Unduplicated Child Count (School Year 1992-93) By Disability (Birth to Age 21) Under Individuals with Disabilities Act. Part B Primary Disability/Age Group # of Children Early Childhood o Birth to Age 3 2,442 o Ages 3-5 10,284 Ages 6 to 22 Speech impairment 15,905 Mild/moderate mental disability 7,271 Severe/profound mental disability 2,813 Physical disability 1,358 Hearing impairment 1,608 Visual disability 351 Specific learning disability 34,186 Emotion/behavior disorder 15,529 Deaf/blind 22 Other health impairment 1,964 Autism 434 Traumatic brain injury 36 TOTAL 94,203 20 Tab1e 2 Percentage of Students (Ages 6-21) By Educational Setting (School Year 1992-1993) Setting % of Students Regular Class" 48% Resource Room 31% Separate Class 11% Separate School 5% Other (e.g. residential/ 5% homebound) TOTAL 100% in general education class 80% of time, and more. in resource room from 49% to 79% of time. 3.2.5 MINNESOTA DEPARTMENT OF ECONOMIC SECURITY The purpose of the Department of Economic Security is to develop, implement, and coordinate employment and income policies for the state of Minnesota. It is the state's principal agency for employment and job training, vocational rehabilitation, and the unemployment insurance program. The Division of Rehabilitation Services (DRS) provides an array of services to assist Minnesota's with disabilities reach their goals for working and living in the community. Vocational Rehabilitation focuses on employment outcomes, both competitive and supported. Each individual receives counseling and guidance, training, and job placement assistance, based on an Individualized Written Rehabilitation Plan. The Independent Living Program supports opportunities for individuals with severe disabilities to live independently and function within their family and community. Services are provide through Centers for Independent Living and Vocational Rehabilitation field offices located throughout the state. Extended Employment provides individuals with developmental disabilities with the ongoing supports they need to remain employed in facility-based employment or in community supported employment. Thirty-two private, nonprofit or government agencies provide these services under contract with the Division of Rehabilitation Services. Emphasis is placed on providing services in the most integrated setting possible, which is usually employment in the community. Change in Service Eligibility: The Rehabilitation Act Amendments of 1992 simplified and clarified eligibility requirements. To be eligible for Vocational Rehabilitation (VR) the person must have a disability and must require VR services. There is no longer a requirement that the agency must document that the person will benefit from services; it is presumed that all individuals can benefit from appropriate services regardless of the severity of the disability. As we move towards the 21st Century our economy is changing and growing. Service jobs are replacing manufacturing jobs. Sophisticated technology makes physical abilities less important. The work force is becoming more diversified. with women people with disabilities, minorities and immigrants playing larger roles. We believe that these changes can provide new opportunities for the integration of workers with disabilities. Harold Russell President's Committee on Employment of People with Disabilities (Source: Working Together: The Key to Jobs for Workers with Disabilities: An AFL/CIO Guide, 1993.) Interagency Initiatives: DRS is involved in the following cross-agency activities, each under separate arrangements: o Red Lake Indian Nation to establish an independent VR program. o Mental Health Division, Department of Human Services to improve the quantity and quality of 21 services to persons with mental illness. Minnesota Head Injury Association to promote services. State Transition Interagency Agreement and local committees to coordinate services to youth. Supported Employment Collaborative Agreements with DHS, Medical Assistance and Community Social Services. University of Minnesota, Multiattribute Utility Evaluation Project. Department of Education, Transition Systems Improvement Grant. Projects with Industry, six rural sites, coordinating training and employment placement for 230 individuals each year with the business community. State Services for the Blind and Visually Handicapped (SSB) aim to facilitate the achievement of vocational personal independence by children and adults who are blind or who have a visual disability. Many individuals served had additional disabilities. In 1993, over 25,000 persons received services designed to assist to achieve employment, literacy, and personal goals. Programs and services include Business Enterprises; Career and Independent Living Services; the Communication Center; and the STORE. The State Job Training Office administers the Job Training Partnership Act (JTPA) in Minnesota. The purpose of the Act is to establish programs to prepare youth and unskilled adults, including people with disabilities, for entry into the labor force. The office provides staff support to the Governor's Job Training Council which is responsible for making recommendations to the Governor on policies, coordination of services, and the implementation of a state plan. Minnesota Project Head Start is administered by the Economic Opportunity Office of the Department of Economic Security. Head Start is a family-centered child development program with the central goal of increasing social competence in children of low income families. In Minnesota, these services are delivered by local community action agencies, Indian tribal governments, private nonprofit agencies, and one school district. At least ten percent of enrollment opportunities must be made available for children with diagnosed disabilities. These children and their families receive the full range of services in an inclusive setting. In school year 1992-93. there were 1,561 children with disabilities enrolled in Head Start, which was 15 percent of the total enrollment. Interagency Initiative-Project Cornerstone State Collaborative Project: Head Start, Department of Economic Security, serves as the lead agency to bring Head Start and low income families into the process of developing family resource and support centers that increase access and improve outcomes in a comprehensive system of coordinated services for children and families. This effort is funded by the U.S. Department of Health and Human Services, Administration for Children, Youth and Families. 3.2.6 MINNESOTA DEPARTMENT OF TRADE AND ECONOMIC DEVELOPMENT The Division of Community Development within this Department administers: Small Cities Development Program (SCDP), The SCDP is the state-administered portion of the U.S. Department of Housing and Urban Development's Community Development Block Grant program. SCDP is a competitive program designed to develop viable small cities by providing decent housing and suitable living environments and expanding economic opportunities principally for persons of low- and moderate-income. Grants may be awarded to cities and towns with populations under 50,000 and counties with populations under 200,000. The program is designed to address a broad range of community development needs, including: Housing Grants where local governments establish revolving loan funds for the purpose of rehabilitating the local housing stock; Public Facilities Grants covering a broad range of community development activities, such as sewage treatment and disposal, wells, water towers, fire halls, and senior centers; and Comprehensive Grants which frequently involve both housing and public facility components; and include economic development through loans to businesses for building construction renovation, purchase of equipment, or working capital. 22 3.2.7 MINNESOTA HOUSING FINANCE AGENCY (MHFA) This state agency works to ensure that decent, safe, energy efficient, and affordable housing is available throughout the state for low and moderate income households. MHFA is involved in lending and financing, allocating housing grants and subsidies, advocating for affordable housing, establishing state housing policies, and providing technical assistance to housing sponsors. MHFA operates a wide. range of programs providing financing for single-family home ownership, single-family home improvement, and multi-family development and rehabilitation. Households with members with a disability qualify and receive assistance through these programs. The agency also administers certain programs specifically targeted toward the needs of persons with a disability, including: The Great Minnesota Fix-up Fund provides reduced-interest rate loans for a wide variety of improvements (including accessibility) in one-to four-unit properties owned by low and moderate income households. Fix-up Fund Accessibility Loan program targets assistance to households with an individual with a severe physical disability. This assistance is for installing modifications which will help the person remain at home and avoid placement in a long-term care facility. The Rehabilitation Loan Program is a cluster of programs providing deferred loans (similar to a grant) or very low-interest loans for basic, high-priority improvements (including accessibility) in one- and two-unit properties owned by low income households. The program is administered by housing redevelopment authorities and community action agencies. The Accessibility Loan Program provides assistance for installing modifications directly related to the basic living needs of a person with a physical disability. The Homesharing Program matches low and moderate income homeowners who are elderly or have a disability with tenants who contribute rent or services in exchange for sharing the home. The program operates with state appropriations made available to non-profit sponsors operating homeshare services. The Housing Trust Fund provides no-interest deferred loans for developing, constructing, acquiring, preserving and repairing rental housing, limited equity cooperative housing, and homes for ownership. Such housing must predominantly benefit very low income households. While the Trust Fund in not expressly targeted at assisting households with a member with a disability, it is one of the Agency's more flexible programs. It has financed many "special needs" projects in the recent past. Group Homes for Persons with Developmental Disabilities: Although no longer accepting applications, MHFA provided mortgage financing for approximately 15 years for developing group homes for persons with a developmental disability. Eighty-four developments throughout the state were financed in this manner. Interagency Initiatives: "Intercom"--Interagency Long-Term Care Planning Committee is delegated the responsibility by the Governor for developing a coherent policy for long-term care. Community housing: Together with the Department of Human Services and non-profit groups, MHFA is exploring financial options for purchase of foreclosed single-family homes available from the U.S. Department of Housing and Urban Development and other public agencies. Training in home accessibility: Together with the Department of Human Services, workshops for county social service and public health personnel who administer waiver programs. 3.2.8 MINNESOTA DEPARTMENT OF TRANSPORTATION (MN/DOT) Public transit is a lifeline which connects Minnesota's to jobs, schools, health facilities, and to many other essential goods and services. Eighty-one million rides were provided in 1989 by transit systems throughout the state. This service meant that thousands of commuters reached work each day, that hundreds of the elderly were able to remain independent and active community participants, and that hundreds of persons with disabilities were able to lead healthy and productive lives. Currently, 19 of the 80 counties in Greater Minnesota have no public transit service and 22 additional counties have public transit service in only a few urban areas. 23 The Office of Transit administers public transit services in the eighty-county geographic area outside the seven-county Twin Cities Metropolitan Area. The Public Transit Assistance Program was established by the Minnesota Legislature in 1977 (M. S. 174.21) for the following purposes: o .To provide access to transit for persons who have no alternative mode of transit available; o To increase the efficiency and productivity of public transit systems; o To alleviate problems of automobile congestion and energy consumption and promote desirable land use where such activities are cost effective; o To maintain a state commitment to public transportation; and o To meet the needs of individual transit systems to the maximum extent possible. The Office of Transit administers the Federal Transit Administration Section 16 Capital Assistance Grant. Capital Assistance is a statewide grant program providing funds to private non-profit organizations and public bodies, services people who are elderly and/or disabled. Eighty percent of the funds are used for the purchase of accessible buses and vans. There are approximately 322 grant-funded vehicles operated by 194 recipient organizations providing accessible transit service throughout Minnesota. ISTEA: The Intermodal Surface Transportation Efficiency Act (ISTEA) was signed in 1991. The purpose of ISTEA is "to develop a National Intermodal Transportation System that is economically efficient, environmentally sound, provides the foundation for the nation to compete in the global economy and will move people and goods in art energy efficient manner. " Among many other provisions is a formula for funding to states for transportation services for persons with disabilities or who are elderly. It also increased the federal share for bus-related equipment needed to meet requirements of the Clean Air Act and the Americans with Disabilities Act. State Public Transit Assistance Fund--For fiscal years 1994 and 1995, the 1993 Minnesota Legislature approved $79.7 million in state funds for the Public Transit Assistance Program, a 10.3 percent increase. Mn/DOT is responsible for the administration of state and federal transit assistance finds for Greater Minnesota (outside the seven-county Twin Cities Metropolitan Area). In addition, Mn/DOT has statewide responsibility for the administration of the Federal Section 16(b)(2) and 18 programs. To receive federal funds Mn/DOT submits applications to the Urban Mass Transportation Administration, administers contracts with local providers, and monitors their compliance with federal regulations. Several categories of federal funding provide support for capital purchases, operating assistance, demonstration projects, and other related operational, capital, and transit planning assistance activities. Public transit provides over 55,000 rides to work each year for rural, small urban and metropolitan Minnesota's. Approximately 50 percent of all employees in Minneapolis commute to work using transit. Regional Transit Board (RTB) and Metropolitan Transit Commission. The Regional Transit Board (RTB) is responsible for short-term planning, policy-making, and finding distribution for transit services in the seven-county metropolitan area. As joint administrators of the Minnesota Public Transit Assistance Program, Mn/DOT and the RTB work closely to coordinate activities which influence public transit throughout the state. The RTB's purpose was established in Minnesota Statute 473.371, Subdivision 2: To provide, to the greatest feasible extent, a basic level of mobility for all people in the Metropolitan Area; To arrange, to the greatest feasible extent, for the provision of a comprehensive set of transit and paratransit services to meet the needs of all people in the Metropolitan Area; To cooperate with private and public transit providers to ensure the most efficient and coordinated use of existing and planned transit resources; and To maintain public mobility in the event of emergencies or energy shortages. The Regional Transit Board annually reviews providers' capital and-operating budgets, plays a key role in developing transit priorities, plans and implements new services, and analyzes local and The 1994 Minnesota Legislature abolished the Regional Transit Board (RTB) and Metropolitan Transit Commission, and transferred the functions of these agencies to the Metropolitan Council. 24 regional marketing strategies. The Regional Transit Board also oversees: Regional fixed route services carry over 97 percent of all trips made on the metropolitan transit system, representing almost 67 million annual rides. Metro Mobility is the region's public transit program for people whose disabilities prevent them from using standard bus service. After major restructuring, a new centralized operation management center was established in October 1993 to take riders' reservations, schedule trips, and dispatch vehicles. Metro Mobility provides an average of 102,000 rides per month throughout the metro area to approximately 20.000 certified riders. Metro Mobility provided 1.1 million trips in 1993. The Metropolitan Transit Commission (MTC) and the Metropolitan Council are the designated recipients of federal funds in the seven-county Metropolitan Area. The MTC administers the Urban Mass Transportation Administration's Section 3 program (Discretionary Capital) and the Section 9 program (Operating and Capital Assistance). The Metropolitan Council administers the Section 8 program (Planning) and passes some of these funds to the RTB for transit planning activities. Meeting Requirements of the Americans with Disabilities Act: All communities in the nation must be in full compliance with the transportation aspects of the Americans with Disabilities Act (ADA) by January 1997. To accomplish this in the metropolitan area, the Regional Transit Board and the Metropolitan Transit Commission worked together to develop the "ADA Paratransit Plan for the Twin Cities Metropolitan Area. " The plan contains year-by-year milestones for the region to achieve full compliance. 3.2.9 MINNESOTA TECHNICAL COLLEGE SYSTEM In recent years, technical training has been made available to persons with disabilities in Technical Colleges. The occupational programs of the Colleges provide students with: 1) initial job training or retraining; 2) an opportunity to improve or upgrade current job skills; 3) a chance to explore other careers; and 4) an opportunity for personal or professional development. The System, as established by the Minnesota Legislature, has a shared governance between state and local boards. State board members are appointed by the governor. Local college board members are industry leaders and representatives of the public. Students with recognized disabilities receive supplemental services (in addition to all regular student development services) in order to enable them to succeed in technical education. I n 1992, 2.885 students with disabilities were attending the 18 technical colleges in Minnesota. The goal for all students is employment. Among all technical college mandates in the class of 1990. 81 percent of the students with disabilities had jobs. Eighty five percent of those without disabilities were employed. Interagency Initiatives: o The State Board of Technical Colleges has been involved in the Minnesota interagency Cooperative Agreement to plan for transition from secondary education to postsecondary education, integrated employment, and community living. o Minnesota Statewide Direct Service Training Initiative: This is a collaborative venture to establish a statewide training system for personnel who provide direct services to people with developmental disabilities, including parent/family members. (See description in Section 4). 3.2.10 OFFICE OF THE OMBUDSMAN FOR MENTAL HEALTH AND MENTAL RETARDATION The Ombudsman Office is an independent agency created by Minnesota Statute 245.91. The Office works closely with public and private agencies, parents and guardians, consumers, and interested others in improving the standards of care, competence, efficiency, and justice for individuals receiving services or treatment for mental illness, mental retardation or related conditions, chemical dependency, or emotional disturbance. 25 The Office receives and resolves complaints; provides mediation and advocacy services for clients; reviews the causes and circumstances of a serious injury or death of a client; monitors and evaluates services and programs; and issues reports to the Governor and public. There were 768 persons with developmental disabilities represented in 1993, 34 percent of all populations served. 3.2.11 MINNESOTA STATE COUNCIL ON DISABILITY In 1973, the Legislature created the Council as the primary public agency to recommend and advocate for programs and legislation that will improve the quality of life and promote the independence of persons with disabilities in Minnesota. The Council strives to fulfill its mission through a combination of activities: o Maintains an organized information and referral database; o Takes the lead in assuring improved physical and program accessibility; o Provides technical consultation; o Develops position statements on the delivery of services to persons with disabilities, based on research, community involvement, and interaction with other government agencies; and o Coordinates legislative initiatives among a variety of agencies and organizations. 3.2.11 MINNESOTA GOVERNOR'S ADVISORY COUNCIL ON TECHNOLOGY FOR PEOPLE WITH DISABILITIES The Advisory Council was established by the Governor as a public-private initiative to develop public policy on the use of technology for people with disabilities. The Council received a five-year grant under the Technology-Related Assistance for Individuals with Disabilities Act of 1988 (P. L. 103-218). The grant established the STAR Program (A System of Technology to Achieve Results) as the lead agency to establish a comprehensive statewide system of technology -relate assistance that is responsive to consumer needs. The purpose of the STAR Program is to increase awareness and access to assistive technology in Minnesota. Specific goals include: o Educating the public about the availability and usefulness of assistive technology; o Analyzing current policies and practices and advocating for change that will increase access to technology; o Providing information regarding finding mechanisms and investigating alternatives; o Expanding community services throughout the state through a grants program; and o Promoting interagency collaboration and coordination. Interagency Initiatives: o Contracting with Minnesota Disability Law Center to assist people in obtaining assistive technology devices and services; o State Transition Interagency Committee; o State Services for the Blind, Technology Center Committee; o Department of Education, Statewide Assistive Technology Committee; o Celebrate Success, a coalition of individuals and agencies to promote awareness; o Used Equipment Referral Systems Committee. 3.2.11 TELECOMMUNICATIONS ACCESS FOR COMMUNICATION-IMPAIRED PERSONS (TACIP) BOARD The Board was created by the Minnesota Legislature in 1987 for the purpose of making the Minnesota telephone network fully accessible to people with "communication impairments, " which includes both hearing and speech disabilities. The Board has two programs. The Equipment Distribution Program, operated by Deaf Services Division of the Department of Human Services, provides specialized telecommunications equipment to eligible persons which enables them to access the telephone network. The Minnesota Relay Service, operated by a private vendor, allows a person using a Telecommunications Device for (Persons who are) Deaf (TDD) to communicate with any other 26 telephone user. Since the beginning of the two programs, over 11,000 telecommunication devices have been distributed without charge to over 7,500 individuals, and over 2.4 million calls have been placed through the relay service. The Minnesota Relay Service and Equipment Distribution Program are funded entirely through a ten-cent monthly surcharge on each telephone customer access line in the state. UNIVERSITY AFFILIATED PROGRAM 3.2.12 THE INSTITUTE ON COMMUNITY INTEGRATION (ICI) The Institute is a University Affiliated Program (UAP) on Developmental Disabilities in the University of Minnesota's College of Education. It was established in 1985 to provide interdisciplinary training, exemplary services, and information for Minnesota citizens with developmental disabilities, their families, service providers, and communities. The mission of the Institute is to apply its resources to improve the quality and community orientation of professional services and social supports available to individuals with disabilities and their families. Its mission is carried out through a program of interdisciplinary professional education, service and technical assistance, applied research and information dissemination based on the belief that persons with disabilities should experience the benefits of family and community living while receiving services necessary to develop their full potential. The Institute on Community Integration Community Integration has emphasized activities that (a) promote integration and inclusion; (b) build local capacity; (c) are interdisciplinary in design; and (d) link in-service/preservice training, technical assistance, service development, and applied research. Core UAP activities include interdisciplinary training, service and consultation, and research and dissemination. In addition, grants from several state and national sources support service, consultation, research and information dissemination in several program areas addressing: early childhood/early intervention; school age services, transition and employment, and adult and community services. Accomplishments during academic year 1992-1993 include: o 180 University of Minnesota students received long term, interdisciplinary training; o 11,196 people attended continuing education/conferences; o 7,763 hours of technical assistance hours were provided to community agencies; and o 38,445 copies of publications were disseminated. FEDERAL PROGRAMS 3.2.13 U.S. DEPARTMENT OF HOUSING ANB URBAN DEVELOPMENT, (HUD) MINNEAPOLIS-ST. PAUL OFFICE, REGION V The United States Congress mandated the Department of Housing and Urban Development to create conditions for every family to have decent and affordable housing, to ensure equal housing opportunity for all, and to strengthen and enrich our Nation's communities. Six priorities were identified as essential to revitalizing the American Dream for those who have been left behind: o Expand home ownership and affordable housing opportunities; o Create jobs and economic development through enterprise zones; o Empower the poor through resident management and homesteading; o Enforce fair housing for all; ~ o Help make public housing drug free; o Help end the tragedy of homelessness. There are several options for procuring financial assistance for providing affordable homes for persons with disabilities,. HUD administers many programs which can assist individuals and communities to develop homes and accessible housing. Only a few major programs are described below. o Direct Loans for Housing for People Who Are Elderly or Handicapped (Section 202) is the 27 standard financing mechanism for subsidizing housing for persons with disabilities and for persons who are elderly. It provides 100 percent direct mortgage loans and rent subsidy for residents. It provides funding for the development of apartment complexes referred to as independent living complexes of up to 24 units on one site, as well as for group homes of up to 15 residents. o Rental Rehabilitation Program provides grants to rehabilitate existing rental units and rental assistance to low-income households. This program is designed to minimize displacement and attract private financing. o Supportive Housing Demonstration Program-Permanent Housing Component advances funds or provide grants to states on behalf of project sponsors, private non-profit organizations or public housing authorities to defray the cost of: 1) acquiring and/or rehabilitating existing buildings for Permanent housing for not more than eight homeless people with disabilities; 2) retirement of mortgage debt; 3) portions of operating expenses for the first two years of operation; and 4) technical assistance related to one or more of the above activities. This program was created under Subtitle C of Title IV of the Stewart B. McKimey Homeless Assistance Act. o Community Development Block Grants (Entitlement) [See also Minnesota Department of Trade and Economic Development which administers the Non-Entitlement Program for Small Cities] provides grants to communities for use in financing projects that foster development of viable urban communities. At least 51 percent of funds are to be targeted to projects benefiting low and moderate income persons. Most communities attempt to leverage CDBG benefits by using them to provide a portion rather than all the financing needed for a project, such as low-interest second mortgages. low interest construction financing, building acquisition, relocation, demolition, rehabilitation, and in some cases, new construction. o Rental Assistance--Housing Vouchers, and Section 8 Certificates, helps low and very low income families in obtaining decent, safe, and sanitary housing in private accommodations. Housing vouchers and Section 8 certificates provide assistance to reduce rental payments. Rental assistance is targeted to individuals with less than 80 percent of the area median income adjusted for family size. Tenants apply directly for vouchers and existing Section 8 certificates. 3.2.14 SOCIAL SECURITY ADMINISTRATION Supplemental Security Income (SSI) provides a national minimum income floor of protection for people who are elderly, have a disability, or are blind. The program is designed to assist individuals with disabilities who are below specified income and resource limits. Various eligibility criteria apply to (i) persons age 65 and over, (ii) persons 18 and older; and (iii} children with severe disabilities. A person who lives independently can receive as much as $406 a month from SS1 (or $669 for a couple if both persons are eligible). People in group homes are often considered to be living independently, while individuals living in someone else's household, including that of parents, qualify for a lower amount. SS1 recipients are also likely to qualify for Food Stamps, Medicaid and Minnesota Supplemental Assistance (MSA). In Minnesota. 49.00 persons--including 10,200 persons who were elderly, 700 persons who were blind, and 38,400 persons with disabilities--received Federal SSI payments in December 1992. Federal payments totaled $15.3 million. The average Federal payment was $310 per month. In addition, 21,300 persons in Minnesota received State-administered supplementation in September 1992, which totaled $4,513,000. Of these, 16,400 received both Federal SS1 and State supplementation, and 4,900 only State supplementation. In December 1992, the total number of persons in Minnesota receiving either a Social Security benefit, a Federal SSI payment, or both was 718,800. The number of children with disabilities in Minnesota receiving SS1 increased from 4,021 in December 1991 to 5.891 in December 1992. Social Security Disability Insurance (SSDI) provides monthly benefits for workers and eligible members of their family, if an illness or injury is expected to keep the worker from working for a year or longer, or to result[t in death. Family members may also qualify for "auxiliary" benefits on the 28 employee's work record. Under Social Security, "disability" is related to the ability to work, and requires total disability. 3.2.15 ADDITIONAL INTERAGENCY COLLABORATIVE ACTIVITIES Family Service/Community-Based Collaborative: The Governor's Children's Cabinet, Minnesota Planning, is the lead agency to establish Family Services Collaborative and Community - Based Collaborative with the intent to provide comprehensive service delivery systems for families and children. Funding comes from the Health and Human Services Omnibus Bill and Education Omnibus Bill. In 1993 and 1994, planning grants totaled $2.4 million; implementation grants totaled $5.3 million. Children's Mental Health Collaborative: The Mental Health Division of the Department of Human Services is the lead agency to design, develop, and ensure implementation of an integrated service system, within a targeted area. The system will develop interagency agreements necessary to implement a coordinated system of outreach to families, with measurable outcomes. A total of $695,000 is available in FY 1994-95 for planning and development grants to local collaborative PEW Initiative: Minnesota planning coordinates this effort in a competitive grant application to reshape service delivery systems and to make investments necessary to foster inclusion and effective support for all children. This initiative seeks four pivotal outcomes: improved child health; adequate child development; reduced barriers to adequate school performance; and improved family function and stability. Learning Readiness: This initiative is headed up by the Minnesota Department of Education for the purpose of strengthening and building upon existing services and resources to assist children (ages 3 1/2 to 5) to enhance learning, development, and future success in school. Funding is through the Education Omnibus Bill. Integrated Service Networks: Led by the Minnesota Department of Health, with use of Health Care Access funds from a variety of agencies, the intent of this initiative is to increase access to quality health care via insurance reforms; MinnesotaCare; and the Minnesota Employees Insurance Program. 29 SECTION FOUR PLAN REVIEW AND REVISION This section presents the requirements made by Congress in the Developmental Disabilities Assistance and Bill of Rights Act. and the ways in which the Governor's Planning Council has complied with the requirements. 4.1 PLAN REVIEW PROCESS Laying the Groundwork, 1987-1993: The Developmental Disabilities Assistance and Bill Of Rights Act of 1987 (P. L. 101-496) contained a number of provisions which required states to review and analyze state policies, practices, and patterns. The intent of these provisions was to assist states in their planning processes, and generate useful information for state and federal policymakers. Many of the requirements contained in P.L. 101-496 were addressed in previous publications of the Minnesota Governor's Planning Council in January 1990: the 1990 Report: The Heart of Community Is Inclusion... and Two-Year Transitional Plan, Developmental Disabilities. The purpose of the reviews and planning for both of these documents, as mandated by P.L. 101-496 [Section 122(f)] was to lay the groundwork for the development of a three-year plan for Federal Fiscal Years 1992-1994: Three-Year Plan: Interdependence, Inclusion, and Contribution (March 15, 1992). Re authorization of the Developmental Disabilities and Bill of Rights Act of 1994, (P.L. 103- 230)--Systemic Change, Capacity Building, and Advocacy: The new Act expanded and modified provisions, and in particular outlined the responsibilities of the Council in the planning process: 1. Overall purpose/mission is to promote through systemic change, capacity building, and advocacy activities . . . the development of a consumer and family-centered comprehensive system and a coordinated array of culturally competent services, supports and other assistance designed to achieve independence, productivity, and integration and inclusion into the community for individuals with developmental disabilities. [Section 124 (a)] 2. State Councils must examine and select priority areas outlined in the Act, which include: o Federal priority areas: - community living activities (optional); - employment (mandatory priority activity for all states); - child development activities (option); - system coordination and community education activities (optional). o State priority area: an area of activity considered essential by the State Developmental Disabilities Council. 3. In addition, Councils must conduct comprehensive reviews and analyses of services, supports, and other assistance, including financial analysis and projections; convene public forums for the purpose of receiving public review and comment; review eligibility for services, evaluate effectiveness of and consumer satisfaction with services; identify and address the needs of populations who are unnerved and undeserved; and make recommendations concerning the removal of barriers to services. 4. Once the Council collects such information, priorities are selected, a plan is written and, once approved, is implemented, monitored, and evaluated. [Section 124 (C)] 30 Public Forums/Town Meetings Held in Minnesota: During July to September 1992, the Minnesota Governor's Planning Council on Developmental Disabilities, in conjunction with a Study Group of the Department of Human Services, sponsored 12 regional Town Meetings to identify service needs, cost, and related issues. In addition, people expressed their views in letters or on the telephone; a one-day toll-free call-in opportunity was available for those who could not attend the Town Meetings. Approximately 1,000 people shared their experiences and views. The comments made by Minnesota citizens, an analysis, and recommendations were published in Minnesota's Speak Out: A Summary of Town Meetings Held Throughout Minnesota on Developmental Disabilities Issues (November 1992). SUMMARY OF MINNESOTA'S SPEAK OUT Theme One: "We have a lot to be proud of and much remains to be done!" People appreciated the accomplishments made during the last decade, especially the increase in community services options. Of particular note are: early intervention services, supported employment, family supports, inclusion in general education classrooms, and less use of Regional Treatment Centers and ICFS-MR; with increased usage of Semi-Independent Living and Supported Living Arrangements, and increased use of waivered services. On the other hand, most people mentioned additional challenges yet to be met. For instance, parents and providers of services talked about supports to families, early intervention and supported employment. "The most important and essential service our family receives is home health care. It is the best, we couldn't live without it. It keeps us sane. We can be employed. We have opportunities. However, health aides are poorly trained. Turnover is staggering. " "The Children Home Care Option and Waiver are miracles. Children with disabilities are now eligible for Medicaid because parents income is not considered. As a result, no child from our county is placed out of the home. We don't even think about placement of children. The pressure is off "The early intervention process works to help coordinate providers, but this coordination ends when the child enters kindergarten. It should continue. " "People are out working who have never worked before. We have 20 new work sites, and people are gainfully employed. " "Supported employment has given my son self-confidence, assertiveness, and dignity. Supported employment has done more for him than 25 years with his family. " For some people, Regional Treatment Centers have been the only safe, secure option available. For a few, they remain the only option. Most agreed, however, that the challenge is to develop supports in the community for all. Many obstacles stand in the way of developing such supports: - Money doesn't follow people when they leave the regional treatment centers to live in community. - There are few or no options for children with complex health needs--placement in a nursing home 31 is restricted by federal regulations, and there are no homes that provide pediatric services. - Schools are not "ready" for full inclusion, and teachers are overwhelmed. "Special education teachers don't even bluff They say they're too busy. Teachers are doing two or three person's work. Children remain in inappropriate settings while they sit on waiting lists for waivered services. Schools start too late or are inadequately addressing transition planning for many youth. Continuity between school and adult services is a major issue. Quality supports in the community, particularly for adults with developmental disabilities, were often described as a promise unmated. Behavioral and medical crisis intervention services are needed. Many families spoke up about their visions and dreams for their children: "My vision is my son will be in our home, not their regional treatment center; included in our school, not their special education program; included in our day care, not their special day care. " Theme Two: Individualization. Services and supports must be designed and delivered for the individual, and in ways that make sense for the individual with disabilities. The concept demands that systems and services listen to the individual and family, empower them to make and act on choices, and create opportunities so that people have choices upon which to act. Three barriers to promoting individualization were identified: o State and federal funding patterns and rules result in a system that funds. programs and type of services rather than individuals. The amount of funding is determined more by the type of service than the needs of the person. o Case management has fallen far short of its promise to ensure that individual needs are met and services are coordinated. o There are few "real" choices/options available. "Some are held hostage because of the funding stream they are in. " "Money goes to programs, not people. The system is driven by funding streams, not individual needs. " "Let's address individual needs, not geographic location. " "The amount of money you receive depends on where you live. " "We're pushing round pegs into square holes. Individualization doesn't exist. " "We say individualized plan, but we don't fund it. "In developing individualized plans, there are too many details, we are too rigid; there is no flexibility. " "We must have a retirement policy. Why do people still have to go to work when they're past retirement age?" 32 Families must also have their needs met in ways they think is appropriate. "It is abnormal to have strangers in your home 24 hours a day especially nurses. A family can have 25 different nurses in their home. " "It is a `travesty and destructive' not to meet family needs in the home or out of the home. We need out-of-home respite. " "We need more flexibility and more individualization. We need vouchers so money can follow people." Theme Three: Staffing ] Specific issues involve pay scales, staff turnover, and staff training in community programs. High turnover means increased training and staffing costs. The fundamental issue is the impact of all these conditions on the lives and futures of people with developmental disabilities who are supported by staff. The issues are quality of support, continuity of relationships with staff, and fundamental issues of safety. Providers of services expressed their frustrations: "The state wants high quality services but will not pay for it. Staff can earn as much money at McDonald's. "A person with a four-year degree earns $12,500 to $14,000 annually (in a community group home). "Our agency has 93 entry level positions and 81 of the 93 positions have new employees with less than one year experience. Turnover is directly related to wages. "The staff are asking, `Whatever happened to the concept of home?' "We are plagued by low pay and high turnover. Individuals with disabilities have to constantly get used to new staff and can't move ahead with such instability in direct care staff" Theme Four: Leadership and Bureaucracy In every Town Meeting, consistent and serious issues were raised in terms of the leadership performance of state agencies. Generally, the system is complicated by a preoccupation for red tape instead of quality. There is little in the system geared to quality. Much stands in the way of quality. There was a loud cry from both providers and family members for increased cooperation and collaboration between agencies. "The system is not user friendly. the vision of quality has been replaced by an obsession with paper compliance. " "There is a crying need for team work and cooperation among and within government departments at all levels. " "Millions of dollars are spent on paperwork and process. Monitoring focuses on paper, not people. Paper is not equal to good lives. " "The rules and regulations that should enhance quality inhibit it. " "In my 16 years of experience, this is the worst I have ever seen. " 33 Theme Five: Inequity of Resources--Inconsistency in the System Practices do not coincide with values and vision. There are great disparities in the system. There are really two systems with quite different resources. The state operated system of facilities runs at high cost for relatively few people, while the community system runs at very low eat for a far greater number of people. As a result, much of the money goes to maintaining a congregated, segregated system, and the administration of the system, rather than to people. Tremendous differences exist throughout the state, and between rural and urban, in terms of what supports are available to individuals with disabilities and their families. Some saw these differences resulting from the various approaches of county governments. There is a marked bias in the system favoring out-of-home placement, in contrast to supporting families to stay together. Each of these trends is inconsistent with the values and principles of community inclusion. "The money does not match the need. The money rests with the type of service. " "Money should follow people. Money should be controlled by the people. " "Where you live is the handicap rather than the person disability. " "Funding has been frozen, but our costs continue to go up. " There are waiting lists for waivers. Older parents who have never utilized services are now in need, but are refused the assistance and services they seek. "It's been our choice to. have our son live with us for 24 years. But now we'd like a group home placement. The waiting list is ten years. It's discriminatory how parents who kept their children don't get services. Regional treatment center residents leave and go into town houses. My son will live in a dump. " Greatest needs for services included: early childhood services, integrated public education, transition programs, supported employment, family support, a range of residential programs, and a range of day programs. Groups whose needs are not being met include those individuals who ate deaf and those with epilepsy. RECOMMENDATIONS THAT RESULTED FROM THE TOWN MEETINGS: The Study Group analyzed the outcomes from the Town Meetings and reached consensus regarding the following conclusions and recommendations: 1. Individual and Family Support. Conclusions: Children with developmental disabilities have a right to a safe, permanent, stable, and nurturing family in the community. Families must be supported on an ongoing basis to assist them in meeting their responsibilities. Families are the greatest natural resource available to their children and are the major providers of support, care, training, and meeting needs. It is in the best interest of the state to preserve, strengthen, and maintain the family unit. 34 Recommendations Place the individual with a disability and the family first in all policy decisions. Designate the individual with a disability and the family as the customers. Ask the customer, respond to the customer, and base decisions on the customer's specifications. Reallocate resources toward individual and family support. Create supports and services that are individually and family centered. The family should identify needed supports and how those supports will be provided. The support must be reliable, ongoing, readily available, and change as needed. 2. Community Programs. Conclusions: Personnel issues including recruitment, selection, training, and retention of staff are linked with the level of funding in community programs. Recommendations Increase funding levels for community programs to maintain quality programs. The recruitment, selection, training, and retention of direct care staff must be addressed at all levels. Funding must reduce the gap between state employees and community staff salaries. Training must address and promote human dignity, self-determination, and independence of people with developmental disabilities. Training should promote state of the art, be delivered locally, in a cost-effective manner, and be linked with technical assistance, follow-up, incentives, and consequences. 3. Array of Services. Conclusions: The state has invested 40 percent of all the public money spent on services to persons with developmental disabilities using Intermediate Care Facilities for Persons with Mental Retardation (ICF-MR) beds, both public and private. This figure includes capital and operations. Recommendations Assess the population of those residing in ICF-MR facilities to determine how many, with appropriate support, could be relocated to waivered service, semi-independent living services, or other less restrictive community programs. Develop a time-phased plan for transition to less restrictive settings and make projections for the continuing need for ICF-MR services. Assist providers in designing and offering alternative services to ICFS-MR. Eliminate the incentive for counties to choose inappropriate services based on cost. 5. Coordination. Conclusions: There is currently no effective mechanism for the state of Minnesota to formulate unifying and comprehensive policies and identify, track, and address issues that extend across agency lines at the state level. Recommendation Restructure the Executive Branch so that: disability issues are linked to the Health and Human Services Cluster; within the Department of Human Services there is no internal, centralized coordination of functions related to developmental disabilities in order to be user friendly. 6. Individual Service Coordination. Conclusions: Individuals and families are often left in a maze when they try to get services which meet their needs. There are four levels of government (federal, state, county, and school district), eight state departments of independent agencies (without counting the criminal justice and corrections systems), 22 major program areas, and 32 different funding streams. 35 Recommendations Provide individuals with developmental disabilities and their family members with a single, continuous point of contact with the services system (service coordinator) where all threads are woven together into a seamless plan that is continuously responsive to individual needs, Several methods for reaching this goal were suggested, including the assurance of built-in quality of services. 7. Quality Assurance. Conclusions: Licensing rules which emphasize process over results, are largely ineffective. The systems for assuring quality are fragmented, full of duplication, redundancies, and gaps. Recommendations Apart from necessary prescriptive requirements, such as fire protection, life safety measures, etc., the system for assuring quality of services provided to people with developmental disabilities should be overhauled to emphasize outcomes or actual improvements in the quality of people's lives. > consolidate health and human services quality assurance functions. 8. Planning Data. Conclusions: Minnesota does not have complete and accurate data on the population with developmental disabilities and their needs. Recommendation To engage in intelligent planning, the state needs a uniform and relatively accurate data base of information on the demographics and needs of people with developmental disabilities, as well as up- to-date data on how public funds are being used to serve that population. 9. Guardianship. Recommendation Transfer the overall responsibility of the Department of Human Services to oversee public guardianship and the specific responsibilities of counties to act as public guardians to either a separate and independent state guardianship office or at least to another state agency where there is relatively little potential conflict of interest. 4.1.1 REVIEW OF STATEWIDE SERVICE DELIVERY AND OTHER STATE PLANS Additional requirements of the Developmental Disabilities Act include: Requirement/Eligibility: The State shall review the eligibility for and scope of services provided to persons with developmental disabilities and their families [Section 122 (b)(2)(C)(i)]; [Section 122(f)(i)]; and [Section 122(b)(5) (C)]. Compliance: The Minnesota Governor's Planning Council has collected and analyzed existing reports, plans and original materials which identify agencies (including public assistance) that receive federal and state funds to provide services to people with developmental disabilities. Eligibility requirements were documented and analyzed for each service. The extent and scope of services were documented. (see The 1990 Report) Eligibility requirements were also reviewed in a survey of state agencies in January through March 1994. No major changes were reported. Requirement/Effectiveness and Satisfaction: Each State Planning Council shall conduct a review and analysis of the effectiveness of, and consumer satisfaction with, the functions performed by, and services provided or paid for from federal and state funds, by each of the state agencies (including 36 public assistance) responsible for performing functions for, and providing services to, all persons with developmental disabilities in the state. Such review and analysis shall be based upon a survey of a representative sample of persons with developmental disabilities receiving services from each agency and their families if appropriate. section 122(~(2)]. Compliance: A consumer survey was conducted in 1988. The form was based on several national survey forms developed for previous studies. Requests for volunteers to participate were distributed to agencies, monthly newsletters and newspapers. The results of the survey were presented in the 1990 Response. We identified the following critical issues for the 1990s: o Having a Home and a Family o Having an Education o Having a Job o Making Sense of Your World o Being Supported. Outcomes from this survey were substantiated during the Town Meetings held in 1992. Requirement/Review ICF-MR Deficiency Reports: The plan shall provide assurances that the State will provide the stare Developmental Disabilities Council with a copy of each annual survey report and plan of corrections for cited deficiencies prepared pursuant to section 1902(a)(31) of the Social Security Act with respect to any intermediate care facility for the mentally retarded in such State not less than 30 days after the completion of each such report or plan. [Section 122(1)]. Compliance: The Council assigned a staff person to review the annual survey reports received from the Minnesota Department of Health. The following number of deficiency reports were reviewed: YEAR NUMBER OF REPORTS FFY 1992 1,108 FFY 1993 744 FFY 1994 419 (as of July 1, 1994) Requirement/Statewide Service System Review: Section 122 (f) of the Developmental Disabilities Assistance and Bill of Rights Act of 1990 required a comprehensive review and analysis of services in the state, and the subsequent use of that review in developing the State plan. Compliance: The 1990 Report was submitted in January 1990. The findings of the review are an integral part of the revisions to the plan reported below in Section 4.2. In addition, the Minnesota Department of Administration conducted an in depth review and analysis of fiscal resources relating to services and programs for persons with developmental disabilities, as published in Public Expenditures for Services to Persons with Developmental Disabilities in Minnesota, (April 1991), Management Analysis Division, Minnesota Department of Administration. Requirement/Education Data: The plan must be developed after consideration of [the data collected by the state education agency under Section 1418 (b)(3) of Title 20. [Section 122(b)(5)(C)]. Compliance: The Governor's Planning Council reviewed the special education state plan; analyzed data collected in the review of eligibility requirements, and the extent, scope and effectiveness of services; and participated in the State Transition Interagency Committee. The Council also participated on art advisory committee to the Minnesota Department of Education System Change Grant regarding the design and implementation of a statewide data collection system for ongoing follow-up of students 37 after leaving the public education system. The Leadership priority of this Three-Year Plan reflects our consideration of the data collected by the state education agency. . . REVIEW OF EXISTING PRIORITY AREA Requirement/Priority Area: The state shall review the extent to which existing priority area activities are responsive to the needs of persons with developmental disabilities and their families. [Section 122(b)(5)(A)] and [Section 122(b)(5)(B)(i)]. Compliance: The priority activities identified in the Three-Year Plan: Interdependence, Inclusion, and Contribution (October 1, 1991, to September 30 1994) focused on Leadership for Empowerment. Compliance/Priority Area (FFY 1992-1994). The Minnesota Governor's Planning Council on Developmental Disabilities selected the option of a "State Priority Area Activity. " According to the Developmental Disabilities Assistance and Bill of Rights Act, a State Priority Area is: Ajectivities to increase the capacities and resources of public and private nonprofit entities and others to develop a system for providing special adaptations of generic services or specialized services or other assistance which responds to the needs and capabilities of persons with developmental disabilities and their families to enhance coordination among entities [Section 102(9) (A)I... in an area considered essential by the State Planning Council [Section 102(1 l)]. The State Priority Area Activity was called Leadership for Empowerment. The term "Empowerment" was defined as: To assist individuals to learn how to obtain information, develop skills, and make choices; To create an environment where choices are honored; and To give individuals and families direct control of resources, In 1991, it was the Council's intent to embark on a decade-long strategy: To promote and multiply personal empowerment; To significantly expand personal choices in relation to community life, school, work, leisure, cultural affairs, economic equity, and parity; and To enhance the level of social participation among its constituency. It was the intent of the Council that grants made during the 1990s would work to bring about a society where all individuals are: Valued and included: Interdependent and contributing; Fully enfranchised with the right to make informed choices. and directly control and possess the resources to achieve a valued future. The Council's policies now fund work that intentionally advances: the principles of full democratic citizen involvement; uncompromising integration; individualized support services at home, school, work, and in the community; political empowerment; and the creation of personal future based on the dreams for and of people with the most severe mental and physical disabilities. 38 During Federal Fiscal Years 1992-1994, the Governor's Planning Council made grants to organizations for projects related to the Leadership for Empowerment priority. In addition, employment, the federal mandatory option,