+

Delaware Family
Voices
Kirstin Rosner
Wilmington University

DE Family Voices
Supporting Families and
Children with Special needs

Mission

Family Voices aims to achieve family-centered care for

all children and youth with special health care needs
and/or disabilities.
Throughout our national grassroots network, we provide
families resources and support to make informed
decisions, advocate for improved public and private
policies, build partnerships among families and
professionals, and serve as a trusted resource on health
care.

PRINCIPLES

Family-centered care

Partnerships

Quality, access, affordability and acceptability

Health systems that work for families and

children

Informed families/strong communities

Self-advocacy/empowerment

Internship Role

Research for grant proposals

Policy Changes

SSI, SSDI, Health Insurance &

Medicaid Language

Client Intake & Referrals

Attend Meetings

Demographic Information
2013 Disability Report
Children from 0-20 with special needs and disabilities

Delaware

0-4 - .6% = 300 out of 56,300 children

5-15 6.2% = 7,900 out of 127,400

16-20 5.5% = 3,100 out of 56,300

United States

0-4 -.8% = 155,700 out of 19,679,600

5-15 5.3% = 2,430,600 out of 45,475,100

16 20 5.6% = 1,221,000 out of 21,710,800

Policy & Procedure

CONFIDENTIALITY

Authorization by executive director

Written Consent

Need to know basis

Failure to comply = Disciplinary Action or Termination

Employee Handbook

Appropriate conduct

Email

Voicemail

Reimbursement for traveling

Discipline & Termination

Organizational Structure &

Governance
Family Voices

National
Board of
Directors

Parent 2 Parent

State
Chapter
F2F
Infrastructure

DE Family Voices

State
Chapter
F2F
Infrastructure

Federation of
Families

State
Chapter

F2F
Infrastructure

Family 2 Family
Health
Information
Center
Federal Grant
(HRSA)

Family
Leadership
Advisory Council
(FLAC)

Funding

Family 2 Family Grant (HRSA)

Early Learning Challenge Grant

Autism Training Grant

Grant through University of Delaware

Donations and fundraising

Relationships

Family Shade Umbrella Network

Child Development Watch

Networking

0-3 Program

Alfred I. DuPont Childrens Hospital

Parent 2 Parent Program

Strengths, Trends & Challenges

Strengths

Great reputation among families and providers

Trends

Access to all services is difficult especially if it is for behavioral problems

Need to develop more opportunities for young adults leaving high school

Transition from youth to adult

More of a focus on the medical home, which is when the families and the
medical providers work together and communicate on the same level.

Challenges

Funding

Staffing

Ensuring voice is at the tables they need to be at to create change.