HR1007 93RD GENERAL ASSEMBLY

HR1007 LRB093 22353 WGH 51605 r

HOUSE RESOLUTION

WHEREAS, Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full inclusion and participation in the economic, political, social, cultural, and educational mainstream of their chosen community and United States society; and

WHEREAS, People who experience developmental disabilities, and their families, ask quite little, given their challenges; one thing that is critical to them is the confidence that, when needed, they will have access to the supports and services that will ameliorate a crisis or trauma and that will provide long-term stability and quality of life for them; confidence at this level requires a long-term public policy that guarantees that needed opportunities for supports and services are available each year; it also requires the confidence that the supports and services that are available are responsive to the needs of the individual; and

WHEREAS, Individuals with developmental disabilities should be supported individually, and individual choices and preferences should be the primary source of direction for services and supports they receive; and

WHEREAS, Federal law and recent court cases have clearly defined the State's responsibility to support each person's choice to live in the community of his or her choice rather than in an institutional facility; and

WHEREAS, The United States Supreme Court decision in Olmstead ex rel. Zimring v. L.C., 119 S.Ct. 2176 (1999), held that persons with disabilities have a right to receive State-funded services and programs in the most inclusive setting appropriate to meet their needs and to participate in community life to the fullest extent possible; and

WHEREAS, The State of Illinois, through the Department of Human Services, intends to incur capital and operational costs to develop and operate 4 10-bed intermediate care facilities for the developmentally disabled on the grounds of the former Lincoln Developmental Center, which is physically segregated from the surrounding, mainstream community; and

WHEREAS, This Department development project is being designed and negotiated without any direct involvement of the 40 people who experience developmental disabilities who may be asked to live in that institutional facility complex; and

WHEREAS, The development of living environments and program components in such facilities without the direct involvement of the people who experience developmental disabilities is in direct conflict with long-standing and well-articulated Department policy on person-centered planning and very clear and well-articulated national standards of best practice for the development of supports and services for people who experience developmental disabilities; and

WHEREAS, The aforementioned Department project perpetuates the current supply-driven approach to services, which is not based on what people who experience developmental disabilities articulate as their need but which in actuality seeks to redress the needs of other, non-disabled people or communities; and

WHEREAS, The aforementioned Department project perpetuates the over-reliance on State-operated developmental centers to provide economic development rather than serve individuals with developmental needs; and

WHEREAS, The Illinois developmental disabilities system has been demonstrated to have institutional and congregate capacities that are significantly above the national norm and inconsistent with consumer demand, which forces those same individuals with developmental disabilities and their families to choose services they don't need or don't want or to not be able to access services at all; and

WHEREAS, Recent national experience demonstrates that economies of scale assumed to be associated with large institutional facilities do not exist or are not equal to related reductions in costs that are offered by supporting the choice of people who experience developmental disabilities to access appropriate community care; and

WHEREAS, The supporting access to appropriate supports and services in the community, developed and designed in response to consumer choice, represents sound public policy because it is the right thing to do for citizens who experience developmental disabilities and are vulnerable and disadvantaged and experience difficulties and because the direct and indirect benefits to the community as a whole are both positive and tangible; and

WHEREAS, The aforementioned consumer-driven approach would be more effective and efficient and would support existing, sound public policy and a cohesive policy and planning structure; and

WHEREAS, Our nation and the State of Illinois must offer the opportunity for and support all people who experience developmental disabilities to realize their own vision for their lives; to accomplish this, families, friends, allies, communities, provider agencies, professionals, advocates, and government alike must work in partnership to do whatever it takes to enable each individual to realize her or his unique vision, and this will happen only when public policy decisions are organized first and foremost around the choice and needs of individual citizens who experience developmental disabilities; and

WHEREAS, The State has a fundamental responsibility to allow people with developmental disabilities now residing in communities and State-operated facilities to determine where they want to live based upon sound principles of person-centered planning; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE NINETY-THIRD GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we strongly urge the Governor, the executive and legislative branches of State government, and the Illinois Department of Human Services to do the following:

(1) Take the immediate actions necessary to redirect and utilize existing appropriations in the capital and operating budgets and the proposed FY 05 executive budgets of the Capital Development Board and the Illinois Department of Human Services that are earmarked for the Lincoln Developmental Center to support 40 individuals with developmental disabilities;

(2) Develop a model approach consistent with national best practice for person-centered and consumer-directed planning and service delivery to identify and develop the living environments, supports, and services for the 40 identified individuals;

(3) Consult with a nationally recognized expert in the field of developmental disabilities, person-centered and consumer-directed service planning and service delivery, and the community-based systems of services to assist the State in formulating the model approach and to oversee the development of person-centered and consumer-directed individualized support plans and appropriate funding allocations, using the following principles:

(a) People and families must participate as valued and empowered partners in all decision-making; opinions of individuals and families are continuously sought to inform policy making and system improvement;

(b) Family members, friends, and members of the community can play an important role in enhancing the lives of individuals with developmental disabilities, especially when the family members, friends, and community members are provided with the necessary community services, individualized supports, and other forms of assistance;

(c) Each person shall have the authority to define and pursue his or her own vision; individuals with developmental disabilities and family members feel welcome to express their ideas, needs, and preferences, as well as lead and direct the development of their support plans with assistance, as needed, from service coordinators, guardians, and other similar persons;

(d) Self-determination or consumer-direction is the organizing principle for service planning and delivery; people and families are entitled to freedom, authority, and support to control, direct, and manage their own services, supports, and funding; individuals have the capacity and the right to choose where and with whom they live;

(e) Personal relationships and community membership are valued; people have support to take part in social, spiritual, recreational, and community activities of their choice;

(f) All networks and systems of support must collaborate in support of the person's vision; people have one plan that pulls together all sources of paid, generic, and natural supports in pursuit of their personal vision; and

(g) There must be resolute, continuous commitment to achieve excellence in all dimensions of supporting individuals and families;

(4) Demonstrate to individuals with developmental disabilities and their families that there is a commitment to long-range public policy goals that do not have an institutional bias, and that this commitment offers as a goal appropriate, quality, cost-effective supports and services in sufficient quality to meet their needs, is based solely on the direct articulation of needs and choice by consumers, and results in a demand-driven system of services and supports;

(5) Demonstrate the State's commitment to make related public policy decisions that are consistent with long-range strategic goals for people who experience developmental disabilities that are developed in partnership with people with developmental disabilities; and

(6) File a report consistent with this Resolution and paragraphs (1) through (5) with the House of Representatives on or before December 31, 2004; and be it further

RESOLVED, That we urge the Department of Human Services and the Administration to cooperate in taking the actions set forth in this Resolution; and be it further

RESOLVED, That copies of this Resolution be sent to the Office of the Governor, the Secretary of the Department of Human Services, the Director of the Office of Management and Budget, and the Secretary of the Senate.