Kansas Division of Early Childhood February 24, 2005

Family Outcomes: Policy & Practice Jean Ann Summers PhD, Beach Center on Disability Nina Zuna Doctoral Student, Beach Center on Disability Kerry Lida Doctoral Student, Beach Center on Disability

Individuals with Disabilities Education Improvement Act (2004) Number of children served (7/04) 679,212 Number of children served (7/04) 272,454 PART C PART B Appropriations 384,597,408 Appropriations 440,808,096 Signed into law on December 3, 2004 (down from 2004) (up from 2004)

What’s NEW in the IFSP…. Description of transition services “measurable results” or outcomes Pre-literacy & language skills EI services based upon peer-reviewed research Initiation, “length”, duration, & “frequency” of services must be reported

IFSP supports family outcomes through… Services to assist families in meeting child needs Measurable results of child and family progress Services in the natural environmentFamily directed assessment of resources, priorities, and concerns

What’s NEW in the IEP…. IEP team shall consider the academic, developmental & “functional needs” of the child. Elimination of short-term objectives and benchmarks except for children who take the alternate assessments X Include present levels of academic achievement and “functional performance”

What’s NEW in the IEP CONT…. Statement of measurable annual goals (academic and fxl) Statement of sped and related services and supplementary aids, based upon peer- reviewed research. Amendments or modifications after IEP is developed can be made w/o convening a meeting if agreed upon by LEA and parents.

IEP supports family outcomes through… Reports to Congress Section 619 funds Including concerns of parents in the their child’s education Use of PBS interventions when appropriate Consider the IFSP to serve as IEP

IDEA Family Services/Supports Part C Family training Counseling & home visits Family training Counseling & home visits Special Instruction Special Instruction Psychological services Psychological services Social Work Services Social Work Services Service Coordination Services Service Coordination Services Transportation Assistive Technology

IDEA Family Services/Supports Part B Family training Counseling & home visits Family training Counseling & home visits Psychological services Psychological services Social Work Services Social Work Services Audiology Services Speech Language Services Orientation & Mobility Services

IDEA Program Evaluation-Part C Government Performance and Results Act (1993) APR Program goal: Enhance the development of infants and toddlers (0-3) with disabilities and support their families in meeting their special needs 1 Family Indicator: The percentage of families participating in Part C that report early intervention services increased their capacity to enhance their child’s development. (NEILS data % & %)

IDEA Program Evaluation-Part B Government Performance and Results Act (1993) APR- Program Goal: Preschool children with disabilities ready to enter school & succeed…. There are NO specific family indicators !!! through assisting states in providing special education & related services There are two child Indicators and one teacher certificate indicators !

Federal Legislation Program Assessment Rating tool (2002) Evaluates agencies in 4 areas: Program purpose and design 100% Program Management 44% Strategic Planning 29% Program Results -0% ?

Office of Special Education Responds…. Initiates focus groups around child/family outcomes Funds Early Childhood Outcome Center Funds G-SEG (General Supervisory Enhancement Grants) to study the implementation of child/family outcomes KSDE was awarded a grant to study child outcomes

Early Childhood Outcomes (ECO) Center Funded by OSEP to develop child & family outcomes Serves as a technical resource to states Conducts research Collaborates with families, researchers, community members on development of outcomes

ECO Family Outcomes Understand child’s strengths/abilities/needs Know rights/communicate child’s needs Help child learn and develop Feel they have adequate social support Able to access services/activities in their community

Family Outcomes: Voices from Families National Center on Outcome Resources - ncor.org Relationships Choice A “normal” life EmpowermentConnection to the community Importance in the community

Quotes from NCOR focus groups “How I define quality is in terms of how I define my family relationship, my family role, and how I define what fulfils our need as a family in the community.”

Quotes cont- When you are going to bring supports into my house, into my family, please make them non-invasive… we want to feel like a normal family as much as possible.”

Quotes cont- Parents should be the ones defining what inclusion means.”

Quotes cont- “High quality service does not mean a program… it means building support for the individual… from co-workers, neighbors, people who work in the stores… all the people that my son lives and works with and interacts with every day.”

Beach Center on Disability Family Outcomes “Family Quality of Life (Park, et. al, 2003) Parent/Professional Partnerships (Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004) “Family Community Integration

Family Comments: Preliminary results from FCI “…my husband would like to participate on sports teams, but he doesn’t want to leave me with the kids …so he doesn’t.”

FCI: Family Comments “…she knows people are staring at her and I had to say something…”

FCI: Family Comments “I couldn’t find one [a church] that would accept my child; I had to drive 18 miles to get this service.”

FCI: Family Comments “A lot of times my older son can not join hobby-based clubs because of my other son’s therapy needs”.

FCI: Family Comments “…finding someone to work with our child with behavior issues is tricky…”

FCI: Family Comments “…a lot of people (referring to other parents of kids with disabilities) don’t like to leave the house because it is way too hard for their child to handle the situation, so instead they have friends over.”

FCI: Family Comments “..nobody right now can do this (attend education courses]; we are interested, but trying to figure it out; there is no solution now.”

FCI: Family Comments “…spending time together as a family is important.”

FCI: Family Comments “..going to dinner at a fancy restaurant would be nice; too many behavior issues now.”

FCI: Family Comments “..just having a break to go shopping or to the movies by myself would be nice..”

Summary Impact of policy on Family Outcomes Impact of practice through IFSP and IEP design and delivery Implications of families’ voices on policy and practice

Family and Professional Networks KERRY LIDA