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FAMILY SUPPORTSAnn Carrellas, LMSW
Developmental Disabilities Institute
Wayne State University
Detroit, Michigan
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Todays presentation
What are Family Supports
A bit of history
What do families want Principles of Self-Determination
Family Centered Empowerment Model
Systems Navigation
What the research says
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The Administration on Developmental
Disabilities
A comprehensive and coordinated set of strategies
that ensure that families assisting family members
with disabilities :
Have access to person-centered and family-centered
resources, supports, services
These strategies are directed at the family unit for the
benefit of the individual with the disability
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Desired Outcomes of Family Support
Care for and enable the growth and independence
of family members with disabilities
Reunite, preserve, strengthen, and maintain families
in their home communities
Ensure that family members with disabilities have
opportunities to exercise true choice and self
determination
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Brief history of Family Supports
Late 1950s came multi-problem familys child
welfare system
The 1960s saw rise of advocacy by families and
individuals for the right to treatment versus
warehousing
1970s and 1980s saw the promotion of treatment
team approach as children and adults withdisabilities were moved out of institutions
1975Education for All Handicapped Children
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Historical Perspective of Family
Centered Practice
IDEA laws promoted parental involvement in
educational processes
Family centered practice was taught to students in
psychology, social work, education
There isnt always agreement on what is family
centered practice
Traditional case management and individual/familycentered and driven practice are different concepts
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What are effective Family Centered
Practices?
Parents are viewed as the experts
Shared decision making
Reciprocal and trusting relationships People are treated with dignity and respect
Family facilitates program plan
Strengths based practice
Familys culture is respected
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The Family is a System
Composed of unique individual members
Family is not traditionally defined-there is no oneway to be a family!
Family goals, personal identities, and experiences
impact the familys needs
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Traditional Case Management
5 functions of case management:
Administration
Crisis management
Consumer empowerment
Individual advocacy
Systems advocacy
Why have these functions developed?
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Why these functions?
Different funding and regulations concerning
provision of supports i.e. medical model, treatment
models, now person centered planning
Systems acts as a service broker of funded services
and supports to control how much and how they are
used
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However we found that
Traditional roles of case managers:
Are incongruent with self-determination
Self- advocacy is not seen as part of the case
manager role to teach
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Self Determination
It is a movement to change the political,
bureaucratic, and social structures of society so
individuals with disabilities are fully participating
citizens in their communities.
Individuals with disabilities with the support of the
people who care about them create meaningful
lives of their own.
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Principles of Self Determination
1. Freedom: The opportunity to choose where and
with whom one lives as well as how one organizes
all important aspects of ones life with freely
chosen assistance.
2. Authority: The ability to control some targeted
amount of public dollars.
3. Support: The ability to organize supports in away that are unique to the person.
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Principles of Self Determination
4. Responsibility: the obligation to use public dollars
wisely and to contribute to ones community.
5. Confirmation: The recognition that individuals with
disabilities themselves must be a major part of the
redesign of the human services system of long
term care.
Source: Nerney, T. and Shumway, D (1996).B
eyond Managed CareVolume 1. University of New Hampshire
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What is Quality of Life?
Different for each person
Meaningful relationships
Community membership Having a home of ones own
Employment and/or generating income
Useful education
Health, safety, and the dignity of risk
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Tools of Self-Determination
Redesign how systems support individuals with
disabilities and their families requires different
tools:
Person centered planning
Independent supports coordination
Individual budget
Fiscal intermediary
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Family Centered Empowerment Model
Based in psycho-social theory
People learn through out their lives and can
contribute to their growth in every life stage
Culture shapes the direction of individual growth
People are part of dynamic on-going communities
Even if we feel isolated we can be assisted to
identify what we want and need
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A New Way to Approach Family
Supports
Systems Navigation
Families are taught and mentored: To become advocates and active brokers of their own
unique services and supports
To serve as systems navigators for other parents
To become advocates and not passive recipients ofservices
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Family Support Navigators
o Are often a parent of a child who has a disability
o Personally experiences a disability
o
Have extensive knowledge of community servicesand resources
o Increase social and inclusive opportunities for
families
o Teach other parents to navigate the community andformal resources such as schools, specialized
services, health care and much more
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Effective Systems Navigators
Use family centered, empowerment based
navigation
Understand the disability service systems at local,
state, and federal levels
Are knowledgeable about family culture and
different forms of communication
Are able to do family centered needs assessmentsand planning
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Effective Systems Navigators
Develop family support strategies
Mentor families
Foster family self determination Access services systems
Monitor services
Facilitates family support activities in local
communities
Guides families in self assessment
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Family Support 360
Ongoing initiative of the Administration on
Developmental Disabilities
21 states have developed FS 360 one stop centers
including Michigan
6 new centers have been funded to address the
needs of military families who traverse civilian and
military service systems
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Family Support 360
Focus of the Family Support 360 initiatives was tocreate:
Comprehensive systems of family centered support
services Create one stop centers to assist families with
members who have developmental disabilities whoare underserved
Designed to help the whole family not just theindividual with the disability
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Family Support 360
Trained navigators develop an individualizedfamily service plan
Navigators provide resources, guidance and
assistance to navigate service systems Families are assisted to identify what agencies
provide services and supports and how to bestaccess them
Navigators help families get through road blocks
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Family assistance
May include but isnt limited to:
Health care
Child care
Educational supports
Employment
Transportation
Housing Respite care
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What do families want?
Family Quality of Life research says: Its not the number of services that is important but the
effectiveness of the service (Samuel, Hobden, LeRoy 2011-in
press) This study was done in an urban area where the
respondents:
74% came from poverty or below income levels
73% came from minority racial/ethnic groups
52% were single parents
Average age of their child with a disability was 11.5 years
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Service needs of families
These families ranked the top services that theyneeded more of:
1. Therapy (36%)
2. Education (26%)3. Respite care (23%)
4. Mental health (22%)
5. Disability funding (12%)6. In-home care (12%)
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Other needed services
7. Doctors (10%)
8. Employment (8%)
9. We dont know what we need (7%)
10. Advocacy (6%)
11. Social Work (6%)
12. Nutritional services (5%)
13. Housing services (2%)14. Vision or hearing (2%)
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Barriers to Accessing Services
1. Lack of Awareness (42%)2. Not available or denied (25%)
3. Finances (19%)
4. Long wait for services (19%)
5. Services dont help/poor quality (19%)
6. Transportation (13%)
7. Poor treatment by staff (10%)
8. Dont understand professionals or have differentbeliefs (2%)
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What Services did Families Use the
Most
1. Doctors (96%)
2. Education (86%)
3. Therapy (73%)
4. Social Work (56%)
5. Mental Health (52%)
6. Disability funding (51%)
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What else do families say they want?
Relationships with professional who provide
emotional support and friendship
To be linked with other parents who have a child
with a disability
Want to know about available resources
Be seen as the expert about their family and their
needs Work in partnership with the navigator
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Youth in Transition
PACER Center 2010 National Survey of Youth with
Disabilities in Transition to Adulthood
Families are in great need of transition support
Services provided need to be better
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Youth in Transition
5 Most Important Information Needs that Families
Identified:
1. Help to improve and build social skills and lifelong
friendships
2. Advocating for youths rights
3. Help to develop skills for living on their own
4. Obtaining medical care and health insurance5. Preparing youth to work
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The Take Away
We need to go to the expertsfamilies and
individuals with disabilitiesas to what are their
supports and service needs
Professionals offer technical assistance andinformation
Family Navigators have the personal experience and
the systems knowledge to partner with families toaccess what they need
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Resources
1. Administration on Developmental Disabilities
www.addfamilysupport360.org
2. Center for Self Determination
http://www.centerforself-determination.com/
3. Developmental Disabilities Institute
http://ddi.wayne.edu/