Presentation by Nancy Thaler on using data to drive program state solutions from TAI 2014

1. USING DATA TO DRIVE PROGRAM
STATE SOLUTIONS
‘Data Matters’ 2014 DD Council TA Institute
July 9, 2014
Nancy Thaler, Executive Director, NASDDDS

2. Population Data
2

3. Financial Picture
Medicare and Medicaid
3

4. Workforce Data
15,000,000
30,000,000
45,000,000
60,000,000
75,000,000
2000 2005 2010 2015 2020 2025 2030
Source: U.S. Census Bureau, Population Division, Interim State Population Projections, 2005
Females aged 25-44 Individuals 65 and older
Larson, Edelstein, 2006
A labor shortage is worsening in one of the
nation's fastest-growing occupations—taking care
of the elderly and disabled-just as baby boomers
head into old age.
Wall Street Journal
April 15. 2013
4

5. Conclusion:
We Can’t afford to Expand Services
that Require 24 hour Care
5

6. National Data Set Treasures
6

7. Cost of Long Term Supports - IDD
7Data Source: Lakin, K.C. MSIS and NCI data from 4 states (1,240 Individuals)
Type of
Service
Cost per
Person
20 yrs. Cost 30 yrs. Cost
Institution $238,500 $4,770,000 $7,155,000
HCBS
24 hr. staffed
Residential
$150,000 $3,000,000 $4,500,000
Shared Living
Host Home
Adult Foster
Care
$50,000 $1,000,000 $1,500,000
Support in
Own or
Family Home
$25,000 $500,000 $750,000

8.  Solution:
 Living with Mom and Dad
 Living with siblings
 Living with other relatives
 Living with Friends
 Living with a partner
 Supported Living – supports provided in the
person’s own home
 Shared Living – the person matched to live with another
8
Focusing on Relationship Based Living Options

9. Most People with IDD in Service Live with Family
9
2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011
Own Home 80,242 86,694 90,597 107,157 101,143 104,386 115,659 115,873 122,088 127,455 126,998
Family 451,677 482,479 500,004 503,641 533,048 569,020 576,163 588,594 599,152 592,180 631,436
Host Home 40,688 42,272 45,759 39,857 35,386 35,302 36,972 38,262 40,967 40,060 44,457
1 to 6 135,322 135,571 135,569 142,918 156,610 157,082 157,765 160,477 158,621 167,874 176,056
7 to 15 54,333 54,031 54,325 58,503 52,888 56,572 59,002 53,198 58,235 55,682 57,946
16+ 77,180 72,742 72,474 69,148 66,501 66,125 62,496 59,447 59,604 57,028 56,008
Nursing Home 35,155 34,820 35,005 32,899 30,027 28,206 26,013 26,080 29,608 31,832 33,661
-
200,000
400,000
600,000
800,000
1,000,000
1,200,000
NumberofPeople
Arizona 86%
Calif. 71%
Florida 70%
Idaho 75%
S.C. 72%
Nevada 69%
Delaware 68%
NJ 68%
Wash 67%
Louisiana 66%
Hawaii 65%
Mass. 62%
NY 62%
West Virginia 60%
57.5%
Amy Hewitt U of Minn. RISP 2011

10.  Solution
10
• Tennessee
• Washington
• Missouri
• Connecticut
• District of Columbia
• Oklahoma
http://supportstofamilies.org/cop/

11. Taking a Life Course Perspective
11
Connections
Day-to-Day
Healthy & Happy
Friends & Family
Meaningful Activity
Discovery

12. Where are People on the Employment Track?
0%
20%
40%
60%
80%
100%
UMass Boston ICI ID/DD Agency Survey
Success in employment varies widely 2009
Washington State (88 %)
Oklahoma (60%)
Connecticut (54%)
Louisiana (47%)
New Hampshire (46%)
12

13. Estimated figures – use your own figures and do the math
Think for the Long Term About Cost - Employment
Type of
Service
1 yr. Cost 3 yr. Cost 10 yr. Cost
Sheltered
Work/Day
Habilitation
$20,000 $60,000 $200,000
Employment
Services
$20,000 $50,000
• $20,000 yr. 1
• $20,000 yr. 2
• $10,000 yr. 3
$120,000
• $50,000 - 3 yrs.
• $70,000 - 7 yrs.
($10,000 per yr.)
13

14. Plans Don’t Match People’s Desire to Work
16%
33%
17%
2%
48%
45%
43% 43%
24%
38%
23%
10%
0%
10%
20%
30%
40%
50%
60%
Community Independent Parents Institution
Working
Wanting
Planning
UMASS ICI
14

15.  Solution:
 Get out of poverty
 More independence
 Make Friends
 Make a contribution to the community
 Positive image and valued role within the family and
community
 Opportunities for learning and expanding relationships
15
Focusing on Employment

16. State Employment Leadership
Network
16
The goal of SELN is to assist member states in
increasing the number of people with I/DD in the
labor force by assisting states to:
•Develop more effective employment systems and
partnerships
•Use data to guide program management at the local
and state level
•Improve employment-related staff competencies
•Maximize resources such as funding and
employment services
•Share resources for systems change across states

17. What About Life?
17

18. Loneliness in Kentucky:
26.8%
73.2%
56.6%
43.4%
70.6%
29.4%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
No/don't know Yes
Person Feels Lonely
Kentucky Average of NCI states General Population

19. KY After Implementing Recommendations
2012

20. Choice in California:
Movers vs. Non-Movers Y1
77%
69% 70%
91%
83%
88%
0%
20%
40%
60%
80%
100%
Chooses How to Spend Free
Time
Chooses Daily Schedule Chooses What to Buy
Everyday Choices
Movers Non-Movers
21

21. Primary Care in Pennsylvania
22

22. National Psychotropic Drug Use
Did not take
medications for mood,
anxiety or psychotic
disorders
Took medications for
mood, anxiety or
psychotic disorders
No mental illness/
psychiatric diagnosis
70% 30%
Mental illness/
psychiatric diagnosis
12% 88%
• 88% with psychiatric diagnosis taking med for mood, anxiety or psychotic
disorders
• BUT 30% without diagnosis also taking meds for at least one condition
• Of those taking meds for at least one condition, 41% did not have psychiatric
diagnosis.

23. Solution
• Use Data To Make Policy
• Use Data to Design Program
• Use Data to Measure Performance
• Use Data to Set Goals