Developmental Disabilities Institute Webinar with Autism NOW June 14, 2011

8/6/2019 Developmental Disabilities Institute Webinar with Autism NOW June 14, 2011

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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/

Documents

Developmental Disabilities Institute Webinar with Autism NOW June 14, 2011