USING DATA TO DRIVE PROGRAM STATE SOLUTIONS

‘Data Matters’ 2014 DD Council TA InstituteJuly 9, 2014Nancy Thaler, Executive Director, NASDDDS

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Population Data

Financial PictureMedicare and Medicaid

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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

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Conclusion:We Can’t afford to Expand

Services that Require 24 hour Care

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National Data Set Treasures

Cost of Long Term Supports - IDD

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Data 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 LivingHost HomeAdult Foster Care

$50,000 $1,000,000 $1,500,000

Support in Own or Family Home

$25,000 $500,000 $750,000

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

Most People with IDD in Service Live with Family

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2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011

Nursing Home 35155 34820 35005 32899 30027 28206 26013 26080 29608 31832 33660.5479

16+ 77180 72742 72474 69148 66501 66125 62496 59447 59604 57028 56008.4961011024

7 to 15 54333 54031 54325 58503 52888 56572 59002 53198 58235 55682 57945.9174509277

1 to 6 135322 135571 135569 142918 156610 157082 157765 160477 158621 167874 176055.917450928

Host Home 40688 42272 45759 39857 35386 35302 36972 38262 40967 40060 44457

Family 451677 482479 500004 503641 533048 569020 576163 588594 599152 592180 631436

Own Home 80242 86694 90597 107157 101143 104386 115659 115873 122088 127455 126998

100,000

300,000

500,000

700,000

900,000

1,100,000

Num

ber

of P

eopl

e

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

Solution

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• Tennessee• Washington• Missouri• Connecticut• District of Columbia• Oklahoma

http://supportstofamilies.org/cop/

Taking a Life Course Perspective

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Connections

Day-to-Day

Healthy & Happy

Friends & Family

Meaningful Activity

Discovery

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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%)

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.)

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Plans Don’t Match People’s Desire to Work

Community Independent Parents Institution0%

10%

20%

30%

40%

50%

60%

16%

33%

17%

2%

48%45% 43% 43%

24%

38%

23%

10%

WorkingWantingPlanning

UMASS ICI

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

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Focusing on Employment

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State Employment Leadership Network

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

What About Life?

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Loneliness in Kentucky:

No/don't know Yes0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

26.8%

73.2%

56.6%

43.4%

70.6%

29.4%

Person Feels Lonely

Kentucky Average of NCI states General Population

KY After Implementing Recommendations 2012

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Choice in California: Movers vs. Non-Movers Y1

Chooses How to Spend Free Time

Chooses Daily Schedule Chooses What to Buy0%

20%

40%

60%

80%

100%

77%

69% 70%

91%

83%88%

Everyday Choices

Movers Non-Movers

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Primary Care in Pennsylvania

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.

Solution

• Use Data To Make Policy

• Use Data to Design Program

• Use Data to Measure Performance

• Use Data to Set Goals