I Can

1
I Cant Get No Satisfaction

• Effective Approaches to Obtain Helpful Feedback
• Valerie J. Bradley
• Human Services Research Institute

Sturbridge, MAMay 26, 2005
2
What Will We Cover?

• Challenges that confront families
• Goals of family support
• Principles of family support
• Review of previous family support evaluation
• Results of NCI survey
• Involving families in other aspects of quality
  assurance

3
Challenges Facing Families

• Isolation
• Lack of sufficient income
• Uncoordinated and erratic system
• Stigma
• Family tensions

• No public mandate for family support
• Lack of information
• Lack of focus on the family
• Exclusion from decision-making

4
Goals of Family Support

• To keep families together
• To enhance capacity and independence
• To improve the familys quality of life and
  inclusion in their community
• To enhance the availability of paid and natural
  supports
• To facilitate connections among families

5
Principles of Family Support

• Family centered
• Family driven
• Family controlled
• Convenient and accessible
• Culturally competent
• Actively reaching out
• Available through developmental phases

• Respectful of family expertise
• Flexible

Family Support Shall Be. . . . . .
6
Components of FamilySupport Policy

• Legislative Mandate
• Flexible Funding
• Family support councils
• Broad eligibility
• Utilization of Medicaid
• Focus on family

• Range of supports
• Flexibility through developmental stages
• Choice
• Focus on natural supports

7
In a Nutshell. . .

• To do whatever it takes for families of people
  with disabilities so that they can live as much
  like other families as possible.

8
Results of Previous Family Surveys

• Cash assistance and information are rated the
  most important components of a family support
  program
• Case management support was rated very highly
• Family support played a big role in preventing
  out of home placement
• Families reported increasing participation in
  their communities

9
The Best Programs Are...

• Family driven Eachfamily leads the
  decision-making process concerning the type and
  amount of support they receive
• Easy to use Families are not overwhelmed by
  paperwork and red tape and
• Flexible Families can choose supports and
  services based on their individual needs and
  preferences.

10
National Core Indicators
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Service Delivery Satisfaction with Services
12
Phase VI Participant States
13
When you ask your service/support coordinator for
assistance, does s/he help you get what you need?
14
Does your family get the services and supports
you need?
15
If your child/family member does not speak
English or uses a different way to communicate
are there enough support workers available who
can communicate with him/her?
16
Does your child/family member have access to the
special equipment or accommodations that s/he
needs (e.g., wheelchair, ramp, communication
board)?
17
Do you feel that family supports have made a
positive difference in the life of your family?
18
Overall, are you satisfied with the services and
supports your child/family member and family
currently receive?
19
Do the services and supports offered meet your
familys needs?
20
Are supports available when your family needs
them?
21
If you have ever asked for services or supports
in an emergency or crisis, was help provided to
you right away?
22
If English is not your first language, are there
support workers or translators available to speak
with you in your preferred language?
23
Community Connections
24
If you want to use typical supports in your
community (e.g., through recreation depts. or
churches), do either the staff who help you plan
or who provide support help connect you to these
supports?
25
If you would like to use family, friends, or
neighbors to provide some of the supports your
family needs, do either the staff who help you
plan or who provide support help you do this?
26
Do you feel that your child/family member has
access to community activities?
27
Does your child/family member participate in
community activities?
28
Choice Control
29
Do you (or your family member) choose the support
workers who work with your family?
30
If your family member gets day or employment
services, does the agency providing these
services involve you in important decisions?
31
Do you (or your family member) have control
and/or input over the hiring and management of
your support workers?
32
Do you (or your family member) want to have
control and/or input over the hiring and
management of your support workers?
33
Do you (or your family member) know how much
money is spent by the MR/DD agency on behalf of
your child with a developmental disability?
34
Do you (or your family member) get to decide how
this money is spent?
35
Conclusion
36
Pay Attention to Methodological Issues

• Engage families in setting the key areas to be
  covered
• Field test survey
• Make sure that its valid and reliable
• Keep an eye on response rates
• Share results with the families that responded

37
Apply Results of Survey Results

• ME realized that they needed to provide
  families with more information and increased case
  management
• Orange County found that young families did not
  have information about gaining access to
  community recreational and other generic resources

38
Monitoring Performance of Family Support Programs

• Begin with family challenges and expectations
• Families should participate in defining what is
  quality
• Families should be involved in measuring the
  quality of services
• Results of performance monitoring should be
  shared with families in an accessible fashion
• Families should be involved at a policy making
  level where results of monitoring are interpreted