SW 644: Issues in Developmental DisabilitiesSelf-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 USA10,000,000 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

                                                                              

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

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 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

I

Individual SelfBody, Brain & Senses

WE

Community IT

Social Systems

John McKnightThe 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 & ContributionFamily SupportInclusion 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-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

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 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

Financial Management ServicesCan …

write checks to pay bills

take care of tax withholding

pay worker’s comp, health insurance, other benefits

Financial Management ServicesSome 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 RolesPresence

Participation

Contribution

Support

Safeguarding – Addressing Vulnerability

Personal

Intentional

Thoughtful

Information & Support

Peer to Peer Family 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 soughtTo maintain individual and

family connectionsTo thoughtfully add new

connectionsTo strengthen valued social

rolesTo 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 …