The Role of Family Resource on the Feeding Team

Fran D. Goldfarb MA, CHESMichelle Sepulveda

What is a Family Resource Specialist?

• Parent of a child who has special needs• Trained in Parent-to-Parent

feeling focused emotional support• Provides information and resources

for services available in the community

What is the job of a Family Resource Specialist

• Provides parent-to-parent support• Provides information

and resources • Provides system navigation

from a “user’s perspective”

What is the job of a Family Resource Specialist

• Represents the view of the family• Monitors provision of

family centered care• Serves as a role model

Where do Family Resource Specialists Work?

• Family Resource Centers/Parent-to Parent• Parent Training and Information

Centers• Family Empowerment Centers• Title V programs

– Program staff– Contract with Family Voices

Where do Family Resource Specialists Work?

• Clinical settings– Teams– NICU

• Other systems, i.e. Mental Health• Schools• Volunteer/Condition Specific

Organizations• Advocacy Groups

The Family Resource Specialist in LEND

• Leadership Education in Neuro-developmental and related Disorders

• MCHB funded program• Interdisciplinary Advanced level

training

Description of Feeding Clinic• Interdisciplinary Team• 1 3-hour session

– Case presentation & planning– Family observation– Feeding Observation– Physical Exam– Weighing and measuring– Social Services & Family Resource

interview– Final Case Conference– Recommendation Discussion– Initiation of Plan/Follow-up plan

Family Resource on Feeding Team

• Emerging Process– 1st year that family resource has

been an active on-going member of the team

– Role is being defined throughout the course of this year

Family Resource on Feeding Team

– Experienced parent of a child with ongoing feeding difficulties

• Advantage– Positive enrichment– Source of hope/commonality– naturalizing

Family Resource on Feeding Team

• Challenge– Identify with concerns of parents– This is still an ongoing concern– Not viewing your experience as the

universal experience

Family Resource on Feeding Team

• Identification of role– Assuring recommendations are

realistic and consistent with family’s goals and culture

– Assuring team uses family centered processes

Family Resource on Feeding Team

– Looking at the family’s issuethat may not be addressed by the team

– Initiating contact with the family and allowing the family to know I am a parent of a child with special needs

Family Resource on Feeding Team

• Identification of role– Reviewing the family’s IEP and making

sure the goals and objective’s meet the family’s need with regards to feeding

– Assuring family understands systems and processes they will encounter

– Peer support and referral information

within the family’s community.

Family Resource on Feeding Team

– Making sure the family understand follow-up options

– Connecting the family with their local Family Resource Center

Family Resource: Clinical vs Family Resource Center Role

• Family Resource Center– Purely family focused

• No behavioral expectations/or observation on the child

• Normalizing experience for the parents• Family is encouraged to express emotions

– Staff are mostly parents– Provide information and resources

Family Resource: Clinical vs. Family Resource Center Role

• Clinical Role– Function as part of a team

• Help other team members to understand family’s philosophical and cultural values

• Help reframe family’s concerns, barriers and behaviors

– View how feeding has impacted the family’s life

Family Resource: Clinical vs. Family Resource Center Role

– Address how significantly feeding difficulties impact a parent’s confidence in their overall parenting ability

– Coordinate follow-up with parent– Provide information and resources

Benefits of Family Resource on the Feeding Team

• Trust can be more easily established• Provide team with first person experience

using services and supports• Provide support for the family during the

assessment and follow-up process

Benefits of Family Resource on the Feeding Team

• Team enriched by knowing experiences of Family Resource Specialist and it humanizes the experience for the teamand the family

Incorporating Family Resource into Your Feeding Team

• Establish a relationship with your local parent-to-parent program

• Have a parent of a child with feeding difficulties provide an in-service on the experience of the family

Incorporating Family Resource into Your Feeding Team

• Include a Family Resource Specialist on your feeding team

• Encourage team to spend a “day in the life”