Sample agenda to share the findings of the M&M data subcommittee

Step 3: Share Results

Date:

Time:

Location:

Attendees:

Meeting Purpose:

To share the findings of the M&M data subcommittee and dissect information and determined strengths and weaknesses of current programs

Agenda:

1. Previous Meeting Minutes
2. Define Definitions and Goals
   • Who are Children with Special Health Care Needs?

   CSHCN are defined as those with or at risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required to children generally. These are the children served by all members of the PAR team.

   • What are the outcomes for Children with Special Health Care Needs?
     1. Families of CSHCN partner in decision making at all levels and are satisfied with the services they receive.
     2. All CSHCN receive comprehensive, coordinated care within a medical home.
     3. All CSHCN have adequate insurance to pay for needed services.
     4. All children are screened early and continuously for special health care needs.
     5. Services are organized so families of CSHCN can use them easily.
     6. Youth with special health care needs transition successfully to all aspects of adult life.
3. Reporting the data results for achieving the CSHCN outcomes
   • How are we doing with providing a Medical home for children with special health care needs? -What's working/challenging for children and families?
   • How are we doing with ensuring successful transitions to adult life for youth with special health care needs? -What's working/challenging for children and families?
   • How are we doing with achieving the other 4 outcomes?
4. Next steps for State's State Leadership Team Responsibilities/"To Do" List
   • What is the purpose/desired outcome of disseminating the information? How can this information be used to guide policies and practices?
   • How can this information be shared with others? Who are the recipients?
   • What kind of format can optimally convey the information?
   • Which indicators will state be able to track easily?
   • Which indicators require improved measurement strategies to track?

Core Measure 1: Families as Partners/Family Satisfaction

Families of CSHCN Survey

• Almost 90% of families report they are included in making decisions about child's health care.

Children's Health Survey (CHS)

• About 70% of families with CSHCN report being generally satisfied with health care provided by child's doctor.

OSEP Survey

• About 85% of families report what the family says about child's needs is considered for inclusion in IFSP.
• Around 70% of families report being included in transition training and planning for child.
• Almost 70% of families report speaking out in meetings about educational services for child/family.
• Over 90% of families report a knowledge regarding who to contact to resolve problems related to child/family services.
• 50% of families report being involved in developing statewide policies.

Core Measure 2: Medical Home

Families of CSHCN Survey

• About 92% of families report they have a doctor who knows about child's health.
• About 85% of families report that they doctor talks with family about child's growth, behavior, preventing injuries, and immunizations.
• Almost 90% of families report inclusion in making decisions about child's health care.
• Almost 90% of families report the child's doctor listens carefully.
• About 70% of families report the doctor arranges or coordinates the services for child provided by different doctors, therapists, or other persons.
• From 56-70% of families report they get information about educational and other support services in the community.
• 70% report the family's cultural background is recognized and respected.

Core Measure 3: Adequate Insurance

Families of CSHCN Survey

• Half of the 5% without insurance report that insurance costs too much.
• About 60% of families report out-of-pocket expenses for their child's health care in the last 12 months with almost 20% reporting costs over $1,000.
• Almost 40% of families report that a family member cut down on work hours or stopped working to provide care for their child.
• One-third of families reported that the extra costs of care for their child resulted in financial problems.

Title V National Performance Measures

• About 95% of families report they have health insurance. (Title V/CSHNP, PDSP, Healthy Start, HHSS)

Core Measure 4: Early and Continuous Screening

Title V National Performance Measures

• About 80% of families reported prenatal care in 1st trimester. (Title V /Vital records)
• About 98% of infants were screened for hearing loss (Title V /DSHPSHWA Data)
  • Of those referred for diagnostic audiologic evaluation, about 80% received evaluation; about 45% received evaluation before age 3 months.
  • Of those identified with hearing loss, 88% received intervention; about 60% received intervention before age 6 months.
• About 99% screened for metabolic disorders (Title V/Newbord Metabolic Screening Program /Vital records); 100% of infants identified with metabolic disorders received medical follow-up.

Survey of Physicians on Child Care and Screening for Young Children

• About 66-77% of physicians screened most (75-100%) of their children age 3-4 years for development, hearing, and vision.

Core Measure 5: Community-Based Services

Families of CSHCN Survey

• Almost 90% of families reported involvement with one or more programs:
  • 44% - 1-2 programs
  • 28% - 3-4 programs
  • 15% - 5-8 programs
  • 2.0% - 9-17 programs
• Almost 95% of families reported receiving needed care from a specialist doctor. About 85% of families reported receiving needed dental care.
• About 90% of families reported receiving needed PT, OT, and speech services
• About 85% of families reported receiving needed behavior/emotional or mental health services.
• About 70% of families reported receiving needed home health care.
• About 2-3% of children did not receive services because they were not available in the area.

Children's Health Survey

• About 6% of families reported difficulty getting health care; about 1/3 of these families reported the high cost as the reason for the difficulty.
• About 12% of families reported difficulty getting dental care; about 1/3 of these families reported the high cost as the reason for the difficulty.

Core Measure 6: Transition

NCI Project-Adult Family Survey

• About 90% of families reported receiving information about MR/DD services and supports.
• About 90% of families reported getting enough information to help participate in planning services for family member
• About 90% of families reported getting services and supports that families need.
• About 65% of families reported having access to needed special equipment or accommodations.

Division of Vocation Rehabilitation

• Almost 50% of those receiving services under an IPE (Individualized Plan for Employment), achieved employment outcomes.