Features of the Parent to Parent Service Coordination Model for - - PowerPoint PPT Presentation

Features of the Parent to Parent Service Coordination Model for Preschool Children with ASD in Hartford*

• Families of Children with Autism Spectrum

Disorder

• Living in a High Poverty Environment
• Parent to Parent Service Delivery Model
• Service Coordination
• Measures of Effectiveness Using a Logic Model

Framework *Grant funded by MCHB to UCHC

Household income

• Hartford Median Income: $29,107
• Connecticut Median Income: $69,243

Hartford

Less than $15,000 $15,000 to $24,999 $25,000 to $34,999 $35,000 to $49,999 $50,000 to $74,999 $75,000 to $99,999 $100,000

• r more

Connecticut

Less than $15,000 $15,000 to $24,999 $25,000 to $34,999 $35,000 to $49,999 $50,000 to $74,999 $75,000 to $99,999 $100,000

• r more

Race and Ethnicity

Race (Connecticut)

White Black American Indian and Alaska Native Asian Native Hawaiian and Other Pacific Islander Two or more Races Other

Race (Hartford)

White Black American Indian and Alaska Native Asian Native Hawaiian and Other Pacific Islander Two or more Races Other

Ethnicity (Hartford)

Hispanic or Latino (of any race) Not Hispanic or Latino

Ethnicity (Connecticut)

Hispanic or Latino (of any race) Not Hispanic or Latino

Evidence Base for Parent to Parent

• Parents can train other Parents on Teaching Their

Children Skills( Bruder & Bricker 1984; Bruder,1987)

• Parent to Parent Programs Serve a Variety of Types of

Families and Provide Emotional Support and Informational Support (Santelli, Turnbull, Marquis, & Lerner, 1995;Santelli, Turnbull, Sergeant, et. al, 1996; Santelli, Turnbull, Marquis, & Lerner, 1997).

• Random Control Study Found Differences in Families who

Received Parent to Parent Support VS Delayed Treatment Group: cognitive adaptation; coping ( Singer et al, 1999)

Program Features of Parent to Parent

• Parent of a Child
• Veteran Parent of a Child with Similar Needs
• Training of Veteran Parent on Skills:

Communication Resources Problem Solving Referral

• System Of Matching and Supervising Parents

Evidence Base for Service Coordination

• No Evidence for Child or Family Outcomes Improved as a

Result of Service Coordination as a Program Feature (Bruder & Dunst, 2006; Dunst & Bruder, 2006)

• Research and Training Center Examines and Proposes

Second Generational Research Model (Bruder, Harbin, Whitbread, Conn-Powers, Roberts, Dunst, Van Buren, Mazzarella, & Gabbard, 2005).

Service Coordination Activities ( Part C)

• Coordinate the Performance of Evaluation and Assessments
• Coordinate with Health and Medical Providers
• Facilitating and Participating in the Development, Review, and

Evaluation of IFSPs

• Assisting Families in Identifying Available Service Providers
• Coordinating and Monitoring the Delivery of Available

Services

• Informing Families of the Availability of Advocacy Services
• Facilitating the Development of a Transition Plan to Preschool

Services, if Appropriate (C.F.R. §303.302(d))

Outcome Comparisons

INTERVIEW OUTCOMES DEPHI OUTCOMES SURVEY OUTCOMES Children will have successful transitions. Children have successful transitions. System Coordination Children and families receive appropriate supports and service s that meet their individual needs. Family-Centered Practices People work together as a team Teaming SYSTEM Children and Families receive early intervention services that are individualized, coordinated and effective. Families are involved in decision making. Families are involved in decision making. Family Support and Resources Families make informed decisions about services and opportunities in the community for their children with a disability. Families are informed about resources and services. Information and Referral Quality of Life Families acquire and/or maintain a quality of life that enhances their well-being. Family Support and Resources Families are self-sufficient. Quality of Life Families are knowledgeable of their child’s disability. FAMILY Families are satisfied? Family Satisfaction Children’s development is enhanced. Children’s development is enhanced. CHILD Children are safe and healthy. Children are healthy.

Service Coordination Practices

• Helpgiving
• Collaborations
• Administrative Tasks

Helpgiving Practices

(Dunst &Trivette, 2009)

• Relational: behaviors such as active listening, compassion,

empathy, etc. and positive practitioner attributions about help- receiver capabilities

• Participatory: behaviors that involve help-receiver choice and

decision making, and which meaningfully involve participants in actively obtaining desired resources or supports, or achieving desired life goals.

Service Coordination Outcomes

IF

• Agencies and professionals are coordinated
• Families have access to support, information and education to address

their individual needs

• Families are able to communicate the needs of their child
• Families make informed decisions about services, resources and
• pportunities for their child
• Children and families receive quality services

THEN

• Families acquire and/or maintain a quality of life to enhance their well

being

• Families meet the special needs of their child
• Children’s health and development is enhanced in the following areas:

social emotional skills and relationships acquiring and using knowledge and skills using appropriate behaviors to meet their needs

Inputs Output Immediate

Children and families participate in supports and services that are coordinated, effective and individualized to their needs

Impact

Families acquire and/or maintain a quality of life to enhance their well being Families meet the special needs of their child Children’s health and development is enhanced

Distal Outcomes Activities

Resulting Model Comprised Of:

• Checklists for Each Service Coordination

Activity Which Embeds Practice Categories

• Outcomes Which Were Adopted and

Refined by OSEP for All Infants, Toddlers and Preschoolers Receiving Early Intervention

Initial Intake Checklist Name: The service coordinator will:  / x Notes Share information about:  Early intervention philosophy  The statewide early intervention system including eligibility criteria for children  The difference between assessment for evaluation and ongoing assessment  The role of the family in the assessment process  Procedural safeguards and family rights  Confidentiality policies and practices Gather information from the family about:  Family background, ethnicity and language preference  Family structure and composition  Child health and development status and history  Family resources, concerns and priorities  Other agencies and professionals involved with the child  Their child’s reaction to strangers (e.g., the interventionist)

The service coordinator will:  / x Notes Collaborate to:  Identify methods of sharing information with others, including the family Perform administrative tasks such as:  Get parent permission for the child’s evaluation/assessment  Complete and submit to system releases for information  Complete and submit to system reimbursement information, if needed (insurance, Medicaid, family payment)  Get and share with the early intervention evaluators records and past assessments on the child  Gather information about the child’s disability  Get parent permission to store data  Send a letter of acknowledgement about the family to the referral sources including the medical home

Parent to Parent Service Coordination for Preschool Children with ASD in Hartford

Culturally Compatible Parents who have a Child

with ASD, Provide Service Coordination using Checklists of Practices, And Research Team Collect Data on Measures Of Effectiveness Using Logic Model

Intervention (Independent Variable)

Identification and Minimal Training Of Veteran Parents Use of Activity Checklists Supervision of Veteran Parent

Service Coordination Process

SC searches Toolkit and Curriculum for information and /or asks Project staff Project staff and SC search IDEA.gov, CT SDE website to find an answer (SC learns about resources she can then share with families) SC responds to family with answer, shares resources SC and family develop a plan to address issue Family and SC review outcome

• f plan

Family asks SC a question

Dependent Variables Match Logic Model

• Families Acquired and Maintain a Quality of Life

Family Professional Partnership Family Quality of Life (Beach Center)

• Families Meet the Special Needs of Their Child

Family Outcomes Survey IEP Observation Medical Visit Observation

• Childrens’ Health and Development is Enhanced

IEP Quality Medical Home Index Services Inventory Battelle Developmental Inventory

Pre-Treatment Child Characteristics

• 3- to 5-year old children with ASD
• Mean =47 months
• 83% male
• Battelle Developmental Index
• Mean = 32 months
• Sub-Scale Age Equivalence
• Adult Interaction – M = 18 months
• Peer Interaction – M = 26 months
• Self Concept – M = 18 months

Enrollment

• Completed Time 1 (pre-treatment)
• N = 42
• Completed Time 2 (6-month)
• N = 28
• Completed Time 3 (12-month post-treatment)
• N < 10

Sample

• N=41 (target 50)
• About 65% of sample with gross income < $20,000
• High rates of unemployment
• Especially for mothers ( >63%)
• 50% of parents have high school education or less
• < 10% have 4 year college or graduate degree
• Only 29% of mothers are married
• On scale of 1-10 (with 10 most stress), 60% of parents rated stress

an 8, 9, or 10

• About ½ of families had to miss work due to caring for child with

ASD

• Primary care pediatrician typically little help reducing family stress
• r helping find referrals for services

Children

• 3- to 5-year old children with ASD
• M=47 months
• 83% male
• Battelle Developmental Index
• Mean = 31.6
• Sub-Scale Age Equivalence
• Adult Interaction – M = 18 months
• Peer Interaction – M = 26 months
• Self Concept – M = 18 months

Descriptive Results

• Statistically significant change from baseline to 6-month

checkpoint

• I know who to contact and what to do when we have a question
• r concerns (Family Outcomes Scale)
• Pre M=2.46
• 6-mo M=3.62
• t = 2.65, p = .02

Questions to Service Coordinators from Families

• PPT related questions

How long does a school district have to schedule a PPT once a parent requests one in writing? Who are the required members at a PPT? Can a required member of a PPT be excused? Is the school required to give parents reports or assessment information before the PPT? What if I disagree with the decisions of the PPT?

• Every Day Routines

How can I help my child with potty training? How can I increase my child’s participation at mealtime? Where can I get my child out and about in the community? I need help with basic needs, clothing, household items, etc. How do I help my child with communication? Where can I find a dentist that is experienced with children with ASD? I need support for my other children to help them understand ASD?

• Other Questions

If a parent chooses to send their child to a magnet or charter school can transportation be provided? Who pays for it if the school and the child’s residence are in different towns? How do I add services to my child’s IEP or extend my their day at school? If I move what happens to my child’s services in the new school district? My transportation is not working, who do I call? Can you help me with my child at daycare?

Challenges to Implementation

0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00% 90.00% 100.00%

Challenges to Implementation

0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00% 90.00% 100.00%

Other Challenges (% of visits)

• Family overwhelmed by everyday life and cancels (20%)
• Health of parent major concern (14%)
• Family not home for rescheduled visit (21%)
• Child sick (16%)
• Family leaves during a visit (10%)
• Unsafe neighborhood activity (18%)
• Unable to access home (locked door, not answering; 16%)

Next Steps

• Extension of Project for Another Year
• Solidify Recommendations:

Choice of Veteran Parents Partnership with Schools To Adopt the Model as a Service Delivery Component