What Do People Tell Us About the Quality of Their Supports

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What Do People Tell Us About the Quality of Their
Supports?

• American Association on Mental Retardation
• Val Bradley and Sarah Taub
• Human Services Research Institute
• June 2, 2004
• Philadelphia, Pennsylvania

QUALITY BEGINS WITH THE PERSON
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As Long Ago as 1970, Self-Advocates Told Us What
They Wanted

• An apartment of our own, no coddling by staff
• Right to move in together and have sex
• More personal freedom
• Leave the family home and live on our own
• Wider range of job possibilities
• Presence when decisions are made about us.
• Malmo, Sweden
• 1970

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In the 1970s and 80s, People Coming out of
Institutions Told Us How They Felt

• They were happier in the community
• They could do more things for themselves in the
  community
• They could places like restaurants, to church and
  to movies
• They learned to do things they couldnt do in the
  community
• They didnt want to go back!

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And Self-Advocates Have Told Us How They Feel
About Self Determination

• We need to define self-determination We know
  the principles but people dont get it Its
  problems with the doing that trips people up

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Self-Advocates Said...
That Self Determination means that...

• I am a person like all people My life is my
  own.
• I speak for myself Speak Up Stick up for
  myself.
• I make my own choices
• I am the boss of my own life.
• I make my decisions in my own life.
• I do for myself and not depend on others so
  much.
• I am a person like all people My life is my
  own.

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On a Positive NoteSelf-Advocates Said...

• There is an awakening about self determination.
• Self advocates are participating on boards,
  committees and task forces locally and at the
  state level.
• Self advocates are becoming issues based and
  finding a voice
• States are becoming more flexible in how money is
  spent

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They Also Said There is Still Work to be Done...

• People dont know what self determination is.
• Caseworkers dont allow people to make their own
  decisions.
• Agencies say they believe in self-determination
  but then dont want to give up the money (or the
  power)
• Agencies dont want to get us the supports we want

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Signs of Change in Performance Management

• No longer just better than the institution
• Its about outcomes for people
• Changes in experiences of families and people
  with developmentaldisabilities
• Inclusion of self-advocates in monitoring

Inclusion
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A Collaboration Between the Human Services
Research Institute and the National Association
of State Directors of Developmental Disabilities
Services
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Project Beginnings

• NASDDDS and HSRI collaboration
• Launched in 1997
• Seven field test states (plus steering committee)
• Many indicators covering many outcomes
• Development of surveys

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Participating NCI States
NH
WA
ME
VT
ND
AK
ND
MT
MA
MN
OR
NY
WI
SD
RI
ID
MI
CT
WY
PA
NJ
IA
OH
NE
DE
NV
IN
IL
DC
WV
UT
VA
MD
CO
CA
KS
MO
KY
NC
HI
TN
SC
OK
AR
AZ
NM
Orange County
MS
GA
AL
LA
TX
FL
PR
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What has NCI Accomplished?

• Nationally recognized set of performance and
  outcome indicators
• Surveys that states and everyone else can rely on
• State and national data that can be used for
  trends

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How Are NCI data used?

• Setting goals and priorities
• Budget requests to Governor and legislators
• Points out problems
• Stakeholder advisory committees
• (Quality Councils)

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How are resultsshared?

• On state websites
• Presentations to staff, providers, community
• Summaries shared with families who filled out
  surveys (AZ)
• Simplified version of Consumer
• Survey report for self-advocates (VT)

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What Outcomes Do We Look At?

• Consumer Outcomes
• Employment
• Community Inclusion
• Choice and Decision-making
• Relationships

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(No Transcript)
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We Also Ask Families What They Think

• Family Indicators
• Information and Planning
• Choice Control
• Access Support Delivery
• Community Connections
• Family Involvement
• Satisfaction
• Family Outcomes

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We Also Look At

• Health, Welfare, and Rights
• Safety
• Health, Medications, Wellness (new)
• Respect/Rights
• Staff Stability and Competence
• Staff Stability
• Staff Competence (new)

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Consumer Survey

• 7917 surveys completed
• 67 of people interviewed were able to respond to
  Section I
• In many states, self-advocatedo the interviewing
  (PA, VT,KY, MD)

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Place of Residence
0.0
20.0
40.0
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Areas of Strength

• 92 of all respondents report that they have
  enough privacy
• over 90 of respondents report that support staff
  treat them with respect
• 94 satisfied with home
• 96 satisfied with work/day program
• Participation in community activities is
  generally high, ranging from 69 to 96

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Areas for Improvement

• 77 of all respondents report that service
  coordinators get them what they need, compared
  with 90 in FY2001
• 48 of respondents reported sometimes or
  always feeling lonely
• only 52 of women had a GYN exam in the past year
  and 7 have never had one

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What About People Who Have Individual Budgets?
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How Many People Have Individually-negotiated
Budgets and Fiscal Intermediaries?
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Where Do People With Individual Budgets Live?
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Extent of Control Over Key Life Areas
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Comparisons in Living Arrangements Among People
with and without Individual Budgets and/or Fiscal
Intermediaries
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To What Extent Are Individuals with Individual
Budgets and Fiscal Intermediaries Included in
Their Communities?
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Knowledge of Case Managers
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What Have We Learned Over the Past Few Years

• Beginning to look at trends over past three years
• Five states collected Consumer Survey data
  annually for three years
• Connecticut
• Kentucky
• North Carolina
• Pennsylvania
• Rhode Island

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CM helps get what person needs
90
88
83
83
78
78
5 state average
All state average
FY00
FY01
FY02
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Staff Stability
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Person is satisfied with home
94.4
93.6
92.8
FY00
FY01
FY02
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Person had input in choosing
FY00
FY01
FY02
60
40
20
0
Roommate
Home staff
Case manager
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Important Next Steps

• Place individual outcomes at the center of the
  system
• Enlist assistance of consumers and families
• Identify key areas of performance
• Create a quality committee
• Make results available to everyone

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For More Information

• Final NCI Reports for Phase IV (FY2002) are
  available on HSRIs website www.hsri.org
• Contact us with questions
• staub_at_hsri.org
• vbradley_at_hsri.org