Your Voice Counts The Health Care Experiences of Families of Children with Special Health Care Needs

1
Healthy People 2010 Achieving and Measuring
Success A Family View AMCHP Annual
Meeting March 27, 2001 Nora Wells Director of
Research Activities
2
Where we are

• MCH has been a crucial force in bringing families
  to the policy table
• Families at the national table in workgroups and
  developing monograph
• Now need to educate families of the importance of
  this initiative, and roles they can play
  nationally and in their states

3
Your Voice Counts has (1998) information on

• Coordinated care within a Medical Home
• Adequacy of private and public insurance
• Services organized in easily useable ways
• Families as partners in decision making, and
  satisfied

4
Elements of a Medical Home

• 92 had a primary care provider
• of those, 80 said this provider had the skill
  and experience to care for their child
• Roughly as many parents said their childs most
  important doctor was a specialist as those saying
  a primary care provider
• 50 said they had a case manager

5
Specialist as most important doc?

• child more likely to have a severe condition
• family more likely to have a secondary coverage
  plan
• family more likely to be in less managed plan

6
Adequacy of insurance good or excellent

• 52 overall benefits met childs needs
• 75 - 68 pcps, hospitals, specialty docs
• 52 approving specialty care
• 41 providing skilled and experienced
  specialists such as therapists
• 43-21 plans information-benefits, access,
  appeals, services outside the plan

7
Adequacy of insurance

• 54 had called or written with a complaint,
  asked for an exception to policy or filed a
  formal appeal
• the more tightly managed, the less satisfied
• families with Medicaid more satisfied
• families of children with mental health, behavior
  problems, or autism least satisfied

8
What would help ensure adequacy of coverage?

• More info on plans for families
• More understanding of CSHCN by plans
• Improved coordination among plans and public
  programs
• Improved specialty benefits such as mental
  health, home health, therapies, specialty care,
  durable medical, disposable supplies
• Mechanisms for flexibility in benefits

9
Who had case managers?

• slightly younger children (8.8 vs. 9.2)
• children with less stable conditions
• more likely a member of a minority group
• less likely to have a responding parent who was
  employed
• lower income and less well educated

10
For which agency does the case manager you rely
on most work?
N 1067
11
Comments Case Management

• We as parents do most of the coordination
  because we are unfortunately more knowledgeable.
  The frequent turnover in staff and overworked and
  untrained staff necessitates this. We have had
  four case managers in the past three years!

12
Does the Case Manager you rely on most (of
those families who said they have a case manager
and they needed these services)
13
What do parents say would help ?
Someone to

• Offer information about coordination services
• Listen to them
• Educate them
• Look at the whole picture of family needs
• Offer information
• Be available to family by phone
• Be flexible
• Be a liaison between school, therapy, providers,
  and programs

• Help find ways of paying for needed services and
  equipment
• Help find and train providers
• Help coordinate services
• Help complete paperwork
• Help handle bills
• Help with whats needed
• Help with conferences at school
• Help at doctors
• Help find after school, summer and rec programs
• Help find respite services
• Help child get quality programs

14
Families will partner and be satisfiedNew
opportunities

• Family Voices survey of Parent Participation in
  CSHCN/MCH programs
• MCHB CSHCN SLAITS survey
• CAHPS/HEDIS tool - what level of satisfaction is
  quality?

15
Families will need

• many families and family organizations to be
  brought to the table
• training and information to understand the plan,
  roles for families in measuring and achieving
• full partnership at every level
• mentoring as new families take roles

16
Achieving Success for all CSHCN

• An agenda for all families
• Will succeed only if all players fully engaged
• Will improve quality of services desperately
  needed by families
• families have important roles to play in
  promoting, supporting, monitoring

17
Why are we striving toward this national agenda?

• I sure wish something could be done to make
  this countrys health care system make sense.
  Its hard to keep fightingits tiring. Thank
  you for listening.