Family & Professional Networks in Disability Policy: A Qualitative Inquiry

Exploring the role, capacity and influencing factors involved with family & professional organizations networks in implementing policies in family outcomes.

Primary Topic of Interest

Why is this Topic Important?

There is substantial anecdotal evidence regarding the roles

of family & professional organizations in influencing

outcomes and advocacy in policy implementation; however,

there is almost no published research to date.

What is a Network?

Policy networks include people and organizations who

have similar interests, experience and vision in an area of

policy; they are connected either directly or indirectly with

each other in the development and implementation of

policy. (Mintrom & Vergari, 1998)

Networks include:

Communication among members to

develop, share and disseminate information.

Communication which is influenced by the

perceptions of the reliability & trustworthiness of

participants.

Questions considered in this Project

What are the perceptions of key stakeholders in

these networks concerning the effectiveness of

their activities in enhancing family outcomes in

early intervention?

What are the perceptions of stakeholders in these

networks concerning influencing factors in

implementation of these policies within the

organization and network?

Participating Family &Professional Organizations

The Arc/United Cerebral Palsy

American Association of Mental Retardation

Autism National Committee (AUTCOM)

Council for Exceptional Children

(CCBD & Division of Early Childhood)

Participating Family &Professional Organizations

Family Voices

National Association of State Directors of

Developmental Disabilities

Technical Assistance Alliance for Parent Centers (PACER)

National Association of State Mental Health Program Directors

TASH

National Association of State Directors in

Special Education (NASDSE)

Participants

Executive staff and officers of family and professional

organizations at the national and state level.

For the purposes of this presentation, the results discussed

are limited to interviews conducted with executive staff at

the national offices in Washington, D.C.

Interview procedures

Participants were contacted by e-mail from a director

from the Beach Center

Telephone interviews were scheduled individually with

each participant

Interviews were audio-taped and transcribed

Transcripts were reviewed by the

interviewers and checked for accuracy

Data Analysis

Coding data

Finding patterns

Labeling themes

Developing category systems

Family Outcomes

Activities

What Activities (outside of a Network) affect Policy Development?

Legislative advocacy with Congress Family Opportunity Act Roles in getting legislation passed Explaining programs and family needs to

policymakers Making sure families are present at the policy table

Implementation of policies

Grants to develop family outcomes

Providing technical assistance:-To family health information centers

-To families to understand rights and responsibilities

Providing materials

Education-Educate members about family centered services and

outcome policies

-Develop recommended practices

What Activities (inside an Organizations) affect Priorities of Policies?

Developing position papers

Developing strategic plans for organizations

Collaboration and participation

Issue development: Gathering information from local chapters Talking about issues Having family members advise organization

Future activities

States sharing demonstration project information

Connect like-minded people to develop vision

Grants

Collaboration and other organizations Newsletter Conference Website Books Journals

How does an Issue become a Priority within a Network Organization?

“A notice goes out to all of our chapters… we request input on any topic...”

React to current topic Suggest something new Tell us why we should get rid of something Start with the grassroots asking for input

At the national convention…Open forum for members, volunteers, chapter leader topresent issues to be addressed in upcoming goals

How does an Issue become a Priority within a Network Organization? (Cont)

Committee gathers and synthesizes input from

around the country… as well as information

regarding current political climate Session of Congress Priorities Agendas Updates to current goals

Family Outcomes

Influencing Factors

What influences Network activities?

Lack of consensus and trust between professionals and families

How to identify outcomes and assign accountability in this service system?

Pressure from the OMB on measurability

Increasing talk about choice

Inflexibility of system

What influences Organization activities?

– The relationship between NCLB and SPED is unclear

– Cultural differences in families make defining and measuring family outcomes difficult

– More parent education is needed to help parents know what to expect

– Parent advocacy at the state level

– Organizations focus on parent involvement instead of family outcomes

– Lack of awareness about family issues in OMB and other leadership

– Talk about family support and choice, but little funding

What might impair future activities in promoting family outcomes?

Focus on child, not family, even in family centered services

Family outcomes are less of a priority

Not teaching family-centered at the pre-service level

Lack of agreement on family outcomes

Families not getting enough information to make decisions

Thank you for listening to and participating in this presentation.

Feedback is welcome and appreciated.