For infants and young children with special needs

A statistical concept- how exceptional something is from the norm

Boundaries are influenced by resources Changes in eligibility (SD units). Can loses specialness,

even with established conditions Is it gaps in service because special children need

special things and do not qualify? Or is it better to be normal and do normal things

(inclusionary, diversity)? A push-pull in Family Centered Care

What are origins/description of FCC with families with children/with special needs?

What is the model shift for this work? What are the limitations for

implementation? How has FCC changed Early Intervention

programing? What are the special challenges for FCC

when working with families with children/ with special needs?

National Health Initiatives for FCC first intended for children with special health needs (established genetic or medical condition or demonstrated delay in development) in late 1980’s with refinements into mid-1990’s (Surgeon General, Maternal and Child Health Bureau) particularly care in hospitals, or care for children with multiple medical needs in community.

Idea of Person Centered Care PCC from work with individual’s with dementia (Dr. Thomas Kitwood in UK)

Idea that narrow medical view objectifies; personhood is maintained through relationships to other people-shift to relationships - increased social awareness of psychosocial needs of people and developmental needs of children (PFCC)

“Treat others in a way you yourself would like to be treated” (Golden Rule)

The way health care is delivered can be more important than the actual provision of the care (general vs. specific treatments- Dr. Jerome Frank, first publication 1961)

Acknowledges important role family has in promoting health/well-being of children

Understands that family is child’s primary source of strength and support

Recognizes that child’s and family’s perspective and information are important in clinical decision making

Recognizes that experiences with health care providers can enhance parent’s and child’s confidence and competence to play active role in health care

Builds on partnerships (relationships) between families and professionals (needs of family drive delivery of service vs. needs of medical system)

An interaction which is nonjudgmental, nonhierarchical and non-controlling

vs. a reward to manipulate after you behaved desirably to increase frequency of behavior, according to external standard-the opposite of first approach (we do this all the time to children)

First approach illustrates the essence of FCC Strives to create practitioner-family relationships that level the

playing field Recognizes what family offers/contributes to partnership Professional is just other side of partnership or team player Second approach is traditional expert-centered, unequal power

and control

Adopt attitude of appreciating partner’s perspective/experience (stand in other’s shoes)

Create opportunities for informal dialogue (person-to-person rapport)

Acknowledge family strengths and competencies (respect) Solicit parent’s opinions and ideas (openness, active listening) Seek to understand parent’s and CHILD’S experience and

meaning of communications Demonstrate caring for entire family (empathy) Acknowledge and respond to feelings and emotions of family

Despite years of legislation, policy reform and research demonstration of efficacy of FCC for outcomes and utilization of resources, training and practice are still often traditional

Institutional climate still emphasizes technical care over provider-parent relationships

Insufficient training of health care professionals in FCC, interpersonal relationship building, direct experiences in child and family interventions

Even if trained, institutional environment precludes consistent implementation

Economics of health care impede FCC Practitioners reimbursed for treatments done to individuals who have

diseases No reimbursement for relationship building Managed care and cost containment strategies limit time with family

(psychologist was seeing two families at once in different rooms)

FCC prominently promoted in health care for children with special needs, specifically recognizing parent’s expertise in child’s health and development

American Academy of Pediatrics cites FCC as “best practice” or practice standard for pediatricians to follow

Special Educational legislation- renamed the Individuals with Disabilities Education Act in 1990 (Part C of IDEA) mandates FCC for early intervention with children with special needs. States how public agencies are to provide early intervention and special education and related services. (FDLRS- conferencing example)

Transformation in field of early intervention to interventions in natural environments, with ordinary routines, with caregivers in a relationship with primary provider not a list of therapists in clinics

Not only is intervention in home but parent is empowered to do the intervention and is coached by the practitioner

FCC changes not only how care is given but the content of the care Takes the special out of special needs. Try to achieve ordinariness, inclusion,

build on natural supports, develop through everyday learning opportunities

2-year old with language delays has home based EI. Focus on teaching signs “drink” “more”. Instructs parent to practice with child Is this good FCC or is it a clinic based model dumped on the living room floor?

Vs. Identify activities /interests already part of child’s day (looking at photos-pulls dad to go upstairs, listens to dad talking about photos ) shows signs for “up” and “picture”, suggests using short phrases, facial expressions, waiting for child’s response, following child’s lead.

Promotes all areas of development, not isolated goals Supports parent’s confidence and competence in new strategies,

promotes enjoyment of activities

Issues of Cultural Sensitivity and Competence-know family culture, choose relationship over control (requires constant reflection on your part and active consideration of other’s viewpoint- not what you would do or what they should do, “bad choices”)

Core assumption of FCC is families are capable and competent . What do you do when you have tried but don’t believe this? You don’t believe parents have best interests of child.

In situations of serious health issues, can be life or death of the child-gap widens between professional’s and parent’s believed expertise

How soon physician assumes control depends on comfort level of physician and trust/communication with parents

Situations of acute danger to child (mandate reporting-often severs relations)

Situations of insidious assaults to child’s well being

Feeding issues-typically finicky but with special needs child is compromised, the more control you assert the poorer the child will eat, often medical takes complete control with feeding tube for weight gain, pitfall is puts development at risk

Infectious disease- mother and 2 children with HIV, blood work suggests poor compliance, family admits struggles, child taken into state custody, instead of supports, didn’t believe family was competent

Typically parents with children with special needs are labeled “noncompliant” if they don’t agree with treatment plan of the professional (parents not included in plan but “informed”)

Question of whose best interest/whose perspective ? Families scapegoat child (child must have disorder rather than look at family dynamics that maintain symptom). Families seek diagnosis for child to get therapies (only certain diagnoses are recognized by insurance) or to get disability benefits (family needs money)

Parameters of working relationships governed by system of professional codes (some are tighter than others), perceived threats to professional identity, professional liability

Violations of personal standards of ethical beliefs, just cannot see from the parent’s perspective

Acknowledge mismatch and find new partners

American Academy of Pediatrics (2003). Family-centered care and the pediatrician’s role. Pediatrics, 112(3), 691-696

Barrera, I., & Kramer, L. (2009). Using skilled dialogue to transform challenging

interactions: Honoring identity, voice and connection. Baltimore: Paul H. Brooks Publishing Co.

Dunst, C.J. & Trivette, C.M. (2009). Capacity-building family systems intervention practices. Journal of Family Social Work, 12, 119-143.

Frank, J.D., & Frank, J.B. (1993). Persuasion and healing: A Comparitive study of psychotherapy.

Baltimore, MD. Johns Hopkins University Press.

McWilliam, P.J. (2010). Talking to families. In R.A. McWilliam (Ed.), Working with families of young children with special needs (pp. 127-146). New York: Guilford Press

McWilliam, R.( 2000). It’s only natural... to have early intervention in the environments where it’s needed. In S. Sandall & M. Ostrosky (Eds.). Young Exceptional Children Monograph Series No. 2: Natural Environments and Inclusion (pp. 17-26) Denver, CO: The Division of Early Childhood of the Council for Exceptional Children.

Rush, D.D., Shelden, M.L., & Hanft, B.E. (2003). Coaching families and colleagues: A process for

collaboration in natural settings. Infants and Young Children, 16, 33-47.