SW 644: Issues in Developmental Disabilities Self-Determination Lecture Presenters: Dennis Harkins

Integrating Long-Term Care and Self-Determination Integrating the Good, the True, and the Beautiful for People with Disabilities

Video of Dennis Harkins

Long-Term Care in the USA 10,000,000 People

Long-Term Care in the USA  $194 billion industry ($138 billion public funding)  $123 billion to nursing homes and state institutions for 17% of long-term care population  $71 billion for home care for 83% of LTC recipients  7.3 million people 65 and over; 3.7 million under age 65  Most people with disabilities (40 million) get by with a little help from their family and friends and do not enter the LTC system

Figure 2: United States: Public Spending for MR/DD Services, 2004 Figure 2: United States: Public Spending for MR/DD Services, 2004 Source: From The State of the States in Developmental Disabilities, by D. Braddock et al., 2005, Boulder, CO: Coleman InstituteSource: From The State of the States in Developmental Disabilities, by D. Braddock et al., 2005, Boulder, CO: Coleman Institute United States: Public Spending for MR/DD Services, 2004 : 4 Million Individuals Source: From The State of the States in Developmental Disabilities, by D. Braddock et al., 2005, Boulder, CO: Coleman Institute

An Integral Approach I We It

An Integral Approach I We It

Individual Self (I) Unique, subjective desires, wishes, intentions Can best be known by self, and for some people, with *those who best know and care about the person *Family often play that role Body, Brain & Senses Can be diagnosed and treated by others, and by individual “Physical Location” of a disability Community (WE) Culture(s) Values/Beliefs/Shared Meaning Voluntary Association Places Social Systems (IT) Health Care Professionals Federal, State, Local Programs Economics … Managed Care Service Provider Agencies Political System

Evolution of Services & Support Institutional rejection, community exclusion Institutional Reform Attention to medical and developmental needs Community of peers and paid staff Community Programs (Group Homes, Day Activities, Sheltered Workshops) and Special Education Attention to medical and developmental needs Community of peers and paid staff Physical presence in neighborhood, community and school, although typically in separate settings

I Individual Self Body, Brain & Senses WE Community IT Social Systems

John McKnight The Careless Society Our problem is not ineffective services … our problem is weak communities, made ever more impotent by our strong service systems.

Evolution of Services & Support Community Membership & Self-Determination Attention to medical and developmental needs Community of peers and paid staff Physical presence in neighborhood, community and school Community includes citizens without disabilities Living in own home Employment & Contribution Family Support Inclusion in regular classrooms Each person, in the company of others who care, creates a meaningful life in community

Essential Elements of Self-Determination

Self-Determination has several meanings ….. It means individuals …... with the people important to them …... creating a meaningful life of their own

It also means a political movement by which people with disabilities, their families and allies work to make political, bureaucratic and cultural changes for people with disabilities to be fully accepted as citizens & members of their communities. Nothing about me without me My Life My Way!

Self-Determination has several meanings … And it refers to a redesign of key structural elements of the system of services and supports to people with disabilities and their families

I'm tired of well meaning noncripples with their stereotypes of what I can and cannot do directing my life and my future. Ed Roberts

Key Elements of a Service System based upon Self-Determination

Clarity of Purpose To help people  Receive the support they need,  To craft meaningful lives for themselves in their communities,  In the company of those they care about, in the company of those who care about them.

Principles of Self-Determination Authority over dollars needed for support Freedom to live a meaningful life in the community Support to organize resources in ways that are life enhancing and meaningful, promote valued social roles, and enhance connections to others Responsibility for the wise use of public dollars Confirmation of the important leadership that self- advocates and families must hold within the system they rely upon

Practices of Self-Determination: Person-Centeredness Income School Home and Community

An Individual Budget What is it? A certain amount of funding for support and services, Allocated for an individual or family, Which cannot be spent without authorization by that individual or family.

Individual Budget Authority Needed support can be directly purchased & managed by an individual or family (Employer Authority) Or, all supports and services can be chosen, developed, and subject to change through the authority of the individual or family & allies. (Budget Authority)

Authority Includes … Within a Fair and Equitable Amount of Funding:  Choosing where to live, who to live with and what to do during the day (Basic American Freedoms);  Selecting and, if desired, changing agencies that provide services and support;  Hiring, training, dismissing support workers;  Opportunities to choose or to create unique support and services, individually or collectively.

Independent Support Coordination Also called support broker or personal agent, Ideally, works for the person, not a service provider, county or managed care organization Provides independent advice and support May help person…. … plan … create … organize resources … evaluate how things are working

Financial Management Services Can … write checks to pay bills take care of tax withholding pay worker’s comp, health insurance, other benefits

Financial Management Services Some can also... Assist person to recruit, screen, hire and train support workers Act as employer of record if needed

Individualizing Services Home … work … community

Community Connections … Valued Social Roles Presence Participation Contribution Support

Safeguarding – Addressing Vulnerability Personal Intentional Thoughtful

Information & Support Peer to PeerFamily to Family From the System --- Simply

Imagining Better …. Creating the future

A system based upon Self-Determination supports the expertise of each person (and their allies) to decide … Where to live Who to live with What to do during the day Who to buy support from How to stay connected with important people and places, and How much authority to have over the details of these and other decisions

Within A System Based Upon Self-Determination, the expertise of our Communities … Will deliberately be sought To maintain individual and family connections To thoughtfully add new connections To strengthen valued social roles To Save $ --- To enrich lives

And, the expertise of the system provides Funding … fair, adequate, individual Flexibility … to support the expertise of each person & family Assistance & support (services) INFORMATION to help people plan, imagine, choose, create, evaluate, coordinate, change both from within the system, & from outside the system

The expertise of the system provides Individualized services Co-employment/fiscal intermediaries Structure for people to understand options and obligations Attention to quality outcomes Opportunities for discussion, negotiation, creativity

Putting it all together …