measuring developmental disabilities participant outcomes ... 2012 presentations1... · measuring...

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

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

2 NASUAD Waiver Conference

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



NCI State Participation 2012-13

Background and Rationale The Emergence of National Core Indicators

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


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


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


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


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

National Core Indicators Design

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


Selected Findings from the 2010-2011 Consumer Survey

Use of Data to Identify Specific Policy Issues

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

. Race

.

Ethnicity

.

77%

19%

1% 3%

White

Black or AfricanAmerican

Asian

Other race notlisted

3%

96%

1%

Hispanic

Non-Hispanic

Don't Know

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


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

Choice

0%

10%

20%

30%

40%

50%

60%

70%

80%

50% 45%

64%

80%

60% 60% 58% 59%


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


How Are People Employed?

24%

38%

38%

Competitive

Individually-supported

Group-supported


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


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%


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)


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%


http://www.svwsticker.com/files/svwsticker/users/1/medication.png

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


Selected Findings from the 2010-2011 Adult and Child Family Surveys

Families with Adults with ID/DD Living at Home

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


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


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

29

NASUAD Waiver Conference 2011 HHS Poverty Guidelines for a Family of Four: $22,350

Crisis/Emergency Crisis Supports Provided if Requested (past year)


How States Have Used NCI Data

.

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)

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

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.

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

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

CMS and Other National Uses

Other Uses for NCI Data

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?

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


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


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


NCI Website

www.nationalcoreindicators.org

http://www.steadyvision.com/hsri/nci/design-3.html

For more information

• Chas Moseley [email protected]

• Val Bradley [email protected]

• Sarah Taub [email protected]

NASDDDS

mailto:[email protected]



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