SW 644: Issues in Developmental Disabilities SelfDetermination

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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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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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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
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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.
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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 Contribution Family
Support Inclusion 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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Nothing about me without me
My Life My Way!
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.
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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-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

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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 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

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Financial Management Services
Can write checks to pay bills take care of tax
withholding pay workers comp, health insurance,
other benefits
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Financial Management Services
Some 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 Roles

• Presence
• 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 sought
• To maintain individual and family connections
• To thoughtfully add new connections
• To strengthen valued social roles
• To 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