measuring developmental disabilities participant outcomes ... 2012 presentations1... · measuring...
TRANSCRIPT
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National Core Indicators Measuring Developmental Disabilities Participant Outcomes and System Performance
Chas Moseley, Ed.D.
NASDDDS
Valerie Bradley, HSRI
National Home and Community Based Services Conference
September 11, 2012
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What Will We Cover?
• Overview of NCI • Background and rational • NCI System Measures • Use of data to identify specific policy
issues • How have states used the data • Other important uses of NCI data • Future roles for NCI
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Overview of NCI • Launched in 1997 in 13 participating states;
collaboration between the National Association of State Directors of Developmental Disabilities and the Human Services Research Institute
• Currently 35 states, the District of Columbia and 25 sub-state regions (including all CA Regional Centers)
• Unparalleled 15-year database on over 12,000 individuals
• Addition of California almost doubles the numbers of individuals in the data base
• Valid and reliable consumer survey that has been recently up-dated
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NCI State Participation 2012-13
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Background and Rationale The Emergence of National Core Indicators
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What Fueled the Development of NCI?
• State DD Agency policymakers’ need for timely data on outcomes and system performance
• Demands for information on individual experience and the impact of services and supports
• Potential emergence of managed care
• Expansion and decentralization of service systems
• Emphasis on valued outcomes including employment, family support, and community inclusion
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Context: Meeting the Needs of State Agency Administrators and Policy makers
for data to: • Understand the impact of services on the day-to-day
lives of the people who receive them
• Manage service delivery and improve policy and practice
• Assess the impact of pending cutbacks
• Track key performance goals and outcomes
• Assess the impact of regulatory activities on individual experience
• Respond to the demands of consumers and families for information on system responsiveness
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Premise of NCI: Performance Improvement
• What get measured, gets done If you don’t measure key outcomes, there is no guarantee that they will occur
• NCI measures assess performance:
On key individual and state system outcome variables
Over time (change from baseline)
Against multi-state benchmarks from other states
Across key person-centered objectives: employment, choice, health, welfare and community engagement
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9
NCI MEASURES OFFER A UNIQUE VIEW • Individual characteristics of people receiving
services and support
• The locations where people live
• The activities they engage in during the day including whether they are working
• The nature of their experiences with the supports that they receive (e.g., with case managers, ability to make choices
• The context of their lives – friends, community involvement, safety
• Health and well-being
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NCI System Performance Measures In
div
idu
al O
utc
om
es
• Employment • Community
Participation • Choice &
Decision making
• Personal Relationships
Fam
ily
Ou
tco
mes
• Choice and Control
• Family Involvement
• Information & Planning
• Access, community connections
• Response
Hea
lth
, Wel
fare
, Sys
tem
• Health and Welfare
• Respect for Rights
• Medications • Safety • Service
Coordination • Staff Stability
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National Core Indicators Design
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Data Sources
• Consumer Quality of Life Survey Face to face interview Random sample Adults only
• Family Survey Adult Family Survey (at home, 18+) Family Guardian Survey (out-of-home) Children Family Survey (at home, <18)
• System Indicators Specific protocols for reporting turnover,
mortality and incidents
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Selected Findings from the 2010-2011 Consumer Survey
Use of Data to Identify Specific Policy Issues
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Key Demographical Data
Gender
56%
44%
Male Female
Level of ID
4%
36%
27%
14%
12%
7% No ID label
Mild
Moderate
Severe
Profound
Don't know
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. Race
.
Ethnicity
.
77%
19%
1% 3%
White
Black or AfricanAmerican
Asian
Other race notlisted
3%
96%
1%
Hispanic
Non-Hispanic
Don't Know
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Other Disabilities
0%
5%
10%
15%
20%
25%
30%
35% 33%
10%
15%
3%
26%
11% 10% 8%
2%
9%
1%
23%
33% Dual Diagnosis
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Where People Live
17
0% 5% 10% 15% 20% 25% 30% 35%
Specialized Institutional facility
Group Home
Apartment Program
Independent Home/ Apt
Parent or Relative's home
Foster care/ Host home
Nursing Facility
Other
Don't know
6%
27%
4%
17%
34%
6%
1%
4%
0%
NASUAD Waiver Conference
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Choice
0%
10%
20%
30%
40%
50%
60%
70%
80%
50% 45%
64%
80%
60% 60% 58% 59%
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Loneliness by Living Arrangement
0%
10%
20%
30%
40%
50%
60%
70%
Institution Community based Ind. Home Parents home
59% 57% 58%
63%
27% 31% 31%
27%
14% 12% 11% 10%
Not lonely
Sometimeslonely
Often lonely
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How Are People Employed?
24%
38%
38%
Competitive
Individually-supported
Group-supported
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How Much Money Do People Earn?
$0.00
$50.00
$100.00
$150.00
$200.00
$250.00
$205.68 $188.00
$161.92
Total Wages
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People with ID/DD want to work but,…
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
Have a community job Want a job (if don't have) Have integratedemployment in service
plan
16%
50%
23%
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Basic Exams & Screenings • Higher
percentages in provider-based settings
• Lowest for people living in parent/relative home
• Similar trend across indicators 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100% 94% 97%
91%
85%
95%
88%
73% 69% 68%
69%
58%
43%
90%
68%
49% 46%
Physical exam
Dental visit
Vision screening
Hearing test (5years)
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At Least One Psychotropic Medication by Living Arrangement
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
institution community-basedresidence
independenthome/apt
parents/relativeshome
53%
68%
53%
36%
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Use of Psychotropic Medications and Obesity
0%
5%
10%
15%
20%
25%
30%
35%
40%
no meds at least one kind
8%
4%
35%
29% 28% 30% 29%
37%
underweight
normal
overweight
obese
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Selected Findings from the 2010-2011 Adult and Child Family Surveys
Families with Adults with ID/DD Living at Home
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The Majority of Care Givers are Older
0%
10%
20%
30%
40%
50%
60%
Under 35 35-54 55-74 75 and over
Caregiver Age
Under 35 35-54 55-74 75 and over
64% over
55 years of age
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Family Income
27%
19% 28%
13%
12% Below$15,000
$15,001-$25,000
$25,001-$50,000
$50,001-$75,000
Over $75,000
Child Family Survey Adult Family Survey
24%
16%
24%
18%
18% Below $15,000
$15,001-$25,000
$25,001-$50,000
$50,001-$75,000
Over $75,000
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What does the data tell us? Total Household Income is Low
11%
31% 58%
Household Income FAST
Less than $20,000
$20,000 to
$50,000
Household Income NCI
42% Annual Income less than $50,000
FAST – PACER’s National Family Advocacy and Support Training Project
46% below $25,000
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NASUAD Waiver Conference 2011 HHS Poverty Guidelines for a Family of Four: $22,350
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Crisis/Emergency Crisis Supports Provided if Requested (past year)
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How States Have Used NCI Data
.
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Strengthening Service Delivery and Quality System-Wide
Providing NCI survey findings to state and regional quality councils for review, analysis and feedback
Identifying quality concerns and prioritizing service improvement activities
Comparing the state’s performance against that of other states
Using results from the Consumer Survey to increase the awareness of the Consumer Directed Services option (TX)
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Managing Quality, Improving Service Outcomes and Responsiveness
• Setting quality improvement priorities in areas 5% or more below the national average.
• Sharing system performance data information with waiver program administrators, providers and stakeholder groups.
• Targeting areas for remediation and improvement at the state and system levels
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Washington State
• Created an Annual National
Core Indicators Review Panel Report
• Provides Recommendations and Ideas for Action
to Washington’s Division of Developmental
Disabilities and the DD Council themselves • Example: Because about 1/3 of respondents state that they
seldom or never get emergency services/supports, the Panel
recommends the Division create a 24/7 response system for
people with disabilities and their families.
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Georgia
• Established State and Regional Quality
Councils
• Reviewing NCI and other state data
• Have created regional councils that have
developed quality improvement initiatives
• Using data to assess person
centered practices
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Alabama
Choice and decision-making
was identified as area for
improvement; State responded with five year plan to increase #
of PCP facilitators and offering SRV training to
families
Measured satisfaction pre- and post-
community placement from closing of
state facility
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CMS and Other National Uses
Other Uses for NCI Data
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Meeting CMS Quality Assurance
Requirements
• CMS Assurances:
Plan of Care: Are you getting the services you need?
Are you able to make choices about your services?
Does your family get what they need, do you participate in the plan/
Health and Welfare: Does the individual get regular exams,
Does he/she feel safe at home, in the community?
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Health Surveillance
• Have added more questions to the health sections of the Consumer Survey – will add more in the next revision (chronic illnesses, etc.)
• CDC has taken note of the powerful data included in the NCI that can be useful for health surveillance nationally
• Data can be useful in managed care as acute care becomes integrated with long term care
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In Summary, NCI Allows States to. . .
• Measure and develop strategic goals
• Improve policy planning and implementation
• Enhance transparency
• Involve individuals and families in the interpretation of results
• Communicate progress on achieving key system values – e.g., choice, health, relationships
0%
20%
40%
60%
80%
100%
Flu Vaccine
PneumoniaVaccine
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Next Steps
• Increase participation to all 50 states through grant from AIDD
• Explore the possibility of expanding the NCI model (not necessarily same content) to other populations
• Integration of NCI with other national data bases including the trend data collected on service settings, employment, and service costs
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NCI Website
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For more information
• Chas Moseley [email protected]
• Val Bradley [email protected]
• Sarah Taub [email protected]
NASDDDS