sw 644: issues in developmental disabilities self-determination lecture presenters: dennis harkins
TRANSCRIPT
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SW 644: Issues in Developmental DisabilitiesSelf-Determination
Lecture Presenters:Dennis Harkins
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Integrating Long-Term Care and Self-Determination
Integrating the Good, the True, and the Beautiful for People with Disabilities
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Video of Dennis Harkins
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Long-Term Care in the USA10,000,000 People
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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
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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 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
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An Integral Approach
I
We
It
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An Integral Approach
I
We
It
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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
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Evolution of Services & Support
Institutional rejection, community exclusion
Institutional ReformAttention to medical and developmental needsCommunity 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
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I
Individual SelfBody, Brain & Senses
WE
Community IT
Social Systems
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John McKnightThe Careless Society
Our problem is not ineffective services … our problem is weak communities, made ever more impotent by our strong service systems.
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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 & ContributionFamily SupportInclusion in regular classrooms
Each person, in the company of others who care, creates a meaningful life in community
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Essential Elements of
Self-Determination
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Self-Determination has several meanings …..
It means individuals …...
with the people important to them …...
creating a meaningful life of their own
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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!
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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
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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
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Key Elements of a Service System
based upon Self-Determination
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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.
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Principles of Self-DeterminationAuthority 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
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Practices of Self-Determination:
Person-Centeredness
Income School
Home and Community
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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.
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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)
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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.
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Independent Support CoordinationAlso 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
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Financial Management ServicesCan …
write checks to pay bills
take care of tax withholding
pay worker’s comp, health insurance, other benefits
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Financial Management ServicesSome can also...
Assist person to recruit, screen, hire and train support workers
Act as employer of record if needed
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Individualizing Services
Home … work … community
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Community Connections …Valued Social RolesPresence
Participation
Contribution
Support
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Safeguarding – Addressing Vulnerability
Personal
Intentional
Thoughtful
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Information & Support
Peer to Peer Family to Family
From the System --- Simply
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Imagining Better ….
Creating the future
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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
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Within A System Based Upon Self-Determination, the expertise of our Communities …
Will deliberately be soughtTo maintain individual and
family connectionsTo thoughtfully add new
connectionsTo strengthen valued social
rolesTo Save $ --- To enrich lives
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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
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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
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Putting it all together …