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 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 participationIssue 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 to present 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.