'Fixing a Broken System: What the Experts Say about Modernizing...

"Fixing a Broken System: What the Experts Say about Modernizing SSI and Improving Public Policy for

Americans with Disabilities"

The Facts

• History: Started by the Ruderman Family

in 2001

• Offices in both Boston & Israel, w/

worldwide span (internal programs)

• Staff: 8 full time + 6 active consultants

Mission StatementGuided by our Jewish values, RFF believes that inclusion and

understanding of all people is essential to a fair and flourishing

community.

Our mission is to support effective programs, innovative partnerships

and a dynamic approach to philanthropy in the following areas:

- Advocating for & advancing the inclusion of people with disabilities

throughout the Jewish community

- Fostering a more nuanced understanding of the American Jewish

community among Israeli leaders

- Modeling the practice of strategic philanthropy worldwide

The Facts

• Foundation very involved with partners’

programs

• Strategy includes being national advocate

on issue of inclusion- get the word out

• RFF active online & social media- show

leadership, expertise, advocacy



Panel 1: Who are the SSI Beneficiaries?

Who are the SSI Beneficiaries?

A Historical Perspective

Martin Gerry

Institute for Economic Empowerment

SourceAmerica

May 21, 2014

Fixing a Broken System

Overview of the SSI Program

• A brief historical perspective on how the SSI program was formed and how it

differs from the Social Security Disability Insurance (DI) Program

• Supplemental Security Income (SSI) is a federal program that provides

cash benefits to low-income people who are aged (65 or older), blind, or

“disabled” administered by the Social Security Administration

"Disabled” means the inability to engage in any substantial gainful activity

(SGA) by reason of any medically determinable physical or mental impairment

which can be expected to result in death, or has lasted or can be expected to last

for a continuous period of not less than 12 months.“ SGA for the year 2014, is the

ability to earn $1070 gross income in a month's period

Children under the age of 18 can be determined to be disabled if the child has a

medically determinable impairment that causes marked or severe functional

limitation(s), and can be expected to result in death, or has lasted or can be

expected to last for a continuous period of not less than 12 months.“

• Provides cash benefits to approximately 8 million Americans with disabilities with an average monthly payment of up to $721 for an individual and $1,082 for a couple

• Current annual expenditure of more than $75 Billion from U.S. Treasury from general funds not the Social Security Trust Fund

• Directly linked to Medicaid eligibility7

How Has the SSI Program Evolved?

• In 1950,the Social Security Act was amended to establish a grant-in-aidprogram for the states for persons who were permanently and totally disabled(Title XIV). State-initiated and State-administered

Federal role was primarily to provide matching funds to each State on a formula basis

Dramatic differences in cash payment levels and eligibility factors amongstates

• In 1972, Title XVI was added to the Act creating the Supplemental Security Income program (SSI), a new social welfare program for the aged, blind and disabled

Persons under the age of 18 with marked or severe functional limitation(s) and

persons age 18 and above who are unable to engage in productive work because

of a serious physical or mental handicap

Patterned on the Grant-in-Aid programs (e.g., Aid to Dependent Children Program)

with strict requirements regarding income and resources

National minimum income guarantee with 100% federal funding

More uniform, more liberal and less intrusive eligibility standards

Improved work incentives and opportunities for rehabilitation

In the 1980s, a general earned income exclusion ($1 for $2 benefitoffset) was added to the Program

Legacy Problems

• Punitive rules carried over from social welfare (ADC)

background

Core ADC assumption was that all beneficiaries could

be gainfully employed vs. core SSI assumption is that

all beneficiaries cannot be gainfully employed

• Asset limit of $2,000 ($3,000) is unchanged since 1989

• In-kind contribution rules and family supports

• Overpayments, including automatic overpayment for first

month of work

9

SSI and SSDI

• Social Security Disability Insurance Program (DI) is a federal

social insurance program that provides payments to workers with

disabilities who have paid into the Social Security trust fund through

FICA taxes over the years.

Created as an early retirement program

Variable benefit payments much higher than SSI levels

SGA earnings cliff ($1070 per month)

No $1 for $2 benefits offset

No asset limit or in-kind contribution rules

Medicare eligibility but 2 year waiting period

• New Challenges:

Growing number of ‘dual-eligible’ beneficiaries

Need for a single, federal social insurance program

10

Many SSI Youth Want to Work,

But May Need Support to Do So

Thomas Fraker

Fixing a Broken System: What the Experts Say About Modernizing SSI and Improving Public Policy for Americans with Disabilities

Washington, DC

May 21, 2014

● Target population

– Youth ages 14-25

– SSI recipients (or at risk)

● Goals

– Improve employment and other outcomes

– Reduce dependency on SSI in the long term

● Timing

– Services: 2006-2012

– Evaluation to be completed this year

SSA’s Youth Transition Demonstration

(YTD)

● Based on “Guideposts for Success” by the National Collaborative on Workforce and Disability for Youth (NCWD/Y)

● Included intensive employment services and enhanced SSI work incentives

The YTD Program Model

● Five sites served SSI youth:

– Bronx Co., NY

– Colorado, 4 counties

– Erie Co., NY

– Miami-Dade Co., FL

– West Virginia (19 counties)

● One site served youth at risk of receiving SSI:– Montgomery Co., MD

The Evaluation Sites

● Randomized controlled trial

● Mathematica:

– Recruited over 800 youth per site into the evaluation

– Randomly assigned recruits to treatment or control groups

● The YTD projects:

– Enrolled treatment youth in services

– Served each youth for 12-18 months

Evaluation Design

● Process analysis of project implementation

● Impacts in year after random assignment:

– Use of services

– Expectations

– Educational progress

– Employment

– Benefits

– Other outcomes

– Data from 12-month survey and SSA files

● I will summarize findings for the three projects that had positive impacts on employment

Interim Reports

Bronx Miami WV

Race (%)

White 33 37 80

Black 42 51 9

Other 25 12 11

Hispanic (%) 70 43 3

Male (%) 68 60 55

Average age (years) 16.2 19.1 20.5

Demographics of YTD Enrollees

Bronx Miami WV

Primary disabling condition (%)

Mental illness 13 16 24

Developmental disability 33 44 42

Learning disability/ADD 24 21 14

Physical disability 18 14 16

Speech/sensory impairment 13 5 4

Duration of entitlement (years) 9.2 8.7 7.0

Annual benefit amount $6,463 $6,311 $6,422

SSI Program Characteristics

of YTD Enrollees

Bronx Miami WV

Living arrangement (%)

Two-parent family 18 29 44

Single-parent family 80 62 35

Alone or with friends 1 5 20

Other 1 4 1

Family income < $25K (%) 86 77 82

SNAP receipt (%) 48 49 43

Family Characteristics

of YTD Enrollees

Bronx Miami WV

Expect to live independently

(%)

71 68 72

Expect to work at least part-

time for pay (%)

95 91 78

Future Expectations

of YTD Enrollees

Site All Services

Employment

Services

Bronx Co. 43 21

Miami-Dade Co. 29 14

West Virginia 34 24

Average Hours of YTD

Services per Participant

Source: Case management systems maintained by the YTD projects.

Site

Paid Employment Annual Earnings

Treatment

Mean

Impact

Estimate

Treatment

Mean

Impact

Estimate

Bronx Co. 31% 9 ppt.*** $544 ------

Miami-Dade Co. 23% 9 ppt.*** $895 $306*

West Virginia 43% 19 ppt.*** $1,559 $524***

One-Year Impacts

on Employment and Earnings

Thomas Fraker

Center for Studying Disability Policy

Mathematica Policy Research

1100 1st Street NE, 12th Floor

Washington, DC 20002

(202) 484-4698

[email protected]

www.DisabilityPolicyResearch.org

Contact Information

23

Colleen A. Thoma, PhD

Ruderman Policy Fellow

*

*

*What did you want to do with your life (did you

know)?

*What were your sources of information/

inspiration?

*What was the deciding factor(s) for choosing

your goals?

*What resources did you need to make it work?

*

*What is transition?

*It’s all about Change…

*Began with call from Will (1983) for coordinated set of

activities….

*Written into IDEA, 1990

*Amended in Re-authorization of IDEA in 1997

*Amended again in IDEIA, 2004

*

*Coordinated set of activities for a student with a disability

that:

* Is designed to be within a results-oriented process, that is

focused on improving the academic and functional achievement

of the student with a disability to facilitate the student’s

movement to post-school activities, including:

*

*Post-secondary education

*Vocational education

*Integrated employment (including supported employment)

*Continuing and adult education

*Adult services

*Independent living, or community participation

*

*Is based on the individual student’s needs, taking into

account the students strengths, preferences and interests;

*Includes instruction, related services, community

experiences, th development of employment and other

postschool adult living objectives, and if appropriate,

acquisition of daily living skills and functional vocational

evaluation.

34 CRR 300.43(a); 20 U.S.C. 1414[34]

*

*Student

*Family member

*Teacher(s)

*Vocational specialist

*School administrators

*Transition

specialist/coordinator

*Related service personnel

*Guidance Counselor

*Adult Service Provider

*Advocates

*Peers

*

*School-led meeting using IEP process

*Transition assessments: determine goals &

supports needed to meet goals

*

*Focus on self-determination for students & family involvement

*Short and long-range goals

*Student planning and participation in general ed. Curriculum

*By age 16

*Post-school results

*

*Statement of needed transition services

*Include statement of each public agency’s responsibilities or

linkages

*

*Employment

*Post-secondary education

*Recreation/leisure

*Transportation

*Friends/family

*Living

*Community integration

*Financial planning

*

*The stated outcomes serve as

the basis for IEP

*Identifies the supports student

needs to live, work and play in

community

*Introduces student and family

members to adult service

providers and community

*Identifies gaps in adult services

*Provides info to adult services

*

*Goals: Work in restaurant; live at home; have

friends

*High school life: Worked part-time, stayed

home alone at times; rode bus; had friends;

did lots with cousin & mom

*Postschool: group home (Medicaid waiver);

limited work hours; cut-off from mom, cousins

& friends; spent time in workshop

*

*Benefits planning

*Participant-centered program planning

*Self-determination

*Innovative dual-enrollment programs

*Early planning and collaboration

*Efforts to coordinate services across agencies

Community Services for Working Age Adults with Intellectual and Developmental

Disabilities

Nancy Thaler

NASDDDS

National Association of State Directors of Developmental Disabilities Services

nasddds.org

May 21, 2014

mailto:[email protected]

We Have Made the Shift From This……

To……..

40

Progress Toward Community

Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2013.

Projected Trajectory of the I/DD Institutional Census in the U.S.

Right to Education 1976

Changed Thinking Led to Changed Public Policy

From:

Assuming that people with I/DD

Need to be taken care of

Can’t work

Need constant supervision

Are a burden to families

To:

Discovering that people with I/DD

Can learn

Can be self sufficient

Can work and pay taxes

Don’t need constant supervision

Are valued family members

People need only the

support that matches

their needs.

Community Services Make Financial Sense

Type of Service

Cost per Person

People Served with $5 M

ICF/IDD $128,275 39

HCBS

Residential$70,133 71

Host/Foster Family

$44,122 113

Own Family $25,072 200

Employment - Investing for the Long Term

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

$85,000

• $50,000 1-3 yrs.• $35,000 4-10 yrs.

People Want to Work

No paid job 85%

Paid job 15%

Does not want job

54%

Wants job 46%

No job goal in the

plan72%

Job goal 28%

NCI Data Brief 2012

2008-2009 NCI Data

570,406 223,028 160,580

45

85,560 working

• There is no private insurance product to cover life long supports for developmental disabilities

• No family can bear the costs of supports for a life time • Until Medicaid HCBS, institutions were the only alternative• Medicaid is a primary funder of employment supports

Medicaid Funds All Community Services –Including Employment

Why Don’t More People Work?

Problems from the start:

– No expectations during childhood for employment (no chores; part time jobs, etc.)

– Schools do not focus on employment – few work study programs; little focus on vocational training or secondary education

– By age 16, schools promote application for SSI – prove you can’t work

– Short term thinking - no appreciation for the long term ROI

– No concept of investing in a population

Income and assets tests – it’s all or nothing

– No employment but support or employment with no supports

– Provisions to enable Medicaid to continue while earning a wage are

– Not promoted for school age;

– Are not advertised; and

– Are too complex for the average family to manage

People avoid risk – it’s human

– It can take over 1 yr. to reinstate benefits that you need

– Fear of getting hit with pay backs – they are unexpected, immediate and often severe

Doing Something About ItState Employment Leadership Network

A 30 DD State Agency learning collaborative supported by NASDDDS andThe U of Mass Boston: Institute on Community Inclusion

http://www.selnmembers.org/

http://www.selnmembers.org/

What Does it Take?

Accept that people can be disabled, require support services and also be capable of working and contributing to society

Communicate from early childhood and throughout school years that everyone can and should work – teach and train to work

Establish employment as responsibility and an expected outcome of Education, Medicaid services, not just Vocational Rehabilitation

Remove the risk and disincentives Termination of services that are needed to stay in the work force Financial penalties applied on top of service termination Ridiculously low earnings and asset limits Requiring re-application for benefits when employment is terminated resulting in long delays

regaining needed services

Even better - decouple the need for support services from earning income; institute a means test for services that would enable everyone to work as muchand when they can and retain their support services.



Panel 2: What is the Best Data We have on Individuals Who Receive SSSI?

What is the Best Data We Have on Individuals Who Receive SSI?

Jeffrey HemmeterOffice of Research, Demonstration, and

Employment Support, SSAMay 21, 2014

SSA Data Sources (1)

• Official Statistical Tabulations

– SSI Annual Statistical Report

• Includes discontinued publications:– Children Receiving SSI

– SSI Disabled Recipients Who Work

– SSI Recipients by State and County

– Annual Statistical Supplement

– Annual Report of the SSI Program

• Research on Specific Topics

SSA Data Sources (2)

• Linked Surveys– Survey of Income and Program Participation

– Current Population Survey (March)

– American Community Survey (limited)

– National Health Interview Survey

– Health and Retirement Survey

– National Beneficiary Survey

– One-offs: National Survey of SSI Children and Families; YTD surveys; etc.

Primary Diagnostic Group by Age

Source: Table 35, SSI Annual Statistical Report, 2012

All ages Under 5 5–12 13–17 18–21 22–25 26–29 30–39 40–49 50–59 60–64

Congenital anomalies 1.8 13.2 5.0 2.7 3.1 2.6 2.2 0.9 0.3 0.1 0.1

Mental disorders

Autistic disorders 3.2 7.8 11.5 6.6 9.6 6.6 3.5 0.8 0.2 0.1 0.0

Developmental disorders 4.9 18.7 24.6 15.5 4.6 1.4 1.3 0.6 0.2 0.1 0.1

Childhood and

adolescent disorders not

elsewhere classified

4.9 1.2 19.8 27.0 9.1 2.0 1.5 0.4 0.1 0.0 0.0

Intellectual disability 17.1 1.7 8.0 15.7 31.6 35.6 33.5 28.4 18.8 10.4 6.9

Mood disorders 13.7 0.1 2.1 6.6 9.1 12.1 14.3 18.5 21.0 17.1 13.8

Organic mental disorders 3.6 1.6 2.3 2.2 4.8 5.9 4.8 3.9 3.8 3.6 3.2

Schizophrenic and other

psychotic disorders7.1 0.0 0.2 0.7 3.2 6.6 9.4 11.2 10.8 9.4 6.7

Other mental disorders 5.0 0.2 2.3 4.4 5.3 6.0 6.7 7.7 6.7 4.7 3.7

Neoplasms 1.3 1.5 1.3 0.9 0.8 0.7 0.6 0.7 1.2 1.9 1.9

Diseases of the—

Musculoskeletal system

and connective tissue10.2 1.0 0.7 0.8 1.1 1.6 2.3 4.7 10.6 20.4 25.0

Nervous system and

sense organs7.7 9.6 7.9 6.8 10.8 11.5 10.9 9.4 7.2 5.7 5.6

Other systems 8.3 11.1 6.1 3.8 2.8 3.1 3.3 4.5 7.5 12.9 16.3

Other 7.4 29.7 6.3 4.3 2.8 3.2 3.9 5.2 7.6 8.7 9.5

Unknown 3.6 2.7 2.1 1.9 1.3 1.2 1.9 3.0 3.9 4.9 7.2

Characteristics of SSI Recipients

Source: Bailey and Hemmeter (2014)

NOTE: A household may comprise a person living alone in a housing unit or a group of unrelated persons sharing a housing

unit as partners.

Totals do not necessarily equal the sum of rounded components.

a. Refers to ownership by any member of the household, not necessarily the recipient.

b. Individuals may be counted in more than one category.

Characteristic

Percent

Total Under 18 18–6465 or

older

100.0 100.0 100.0 100.0

Homeownership status a

Owned 34.4 30.1 33.0 40.3

Not owned

Public housing 23.2 17.2 22.9 27.4

Other 42.4 52.7 44.1 32.3

Household receipt of assistance b

Energy 12.6 15.4 12.9 10.5

Housing 4.9 6.5 5.0 3.8

Food (SNAP) 61.8 59.7 64.9 56.0

Characteristics of SSI Recipients

Source: Bailey and Hemmeter (2014)

NOTE: A household may comprise a person living alone in a housing unit or a group of unrelated persons sharing a

housing unit as partners.

Totals do not necessarily equal the sum of rounded components.

a. September–December 2010.

Characteristic

Percent

Total Under 18 18–6465 or

older

Child SSI recipients in household

None 54.7 . . . 93.9 . . .

1 child 15.1 77.5 4.8 . . .

2 or more 4.3 22.5 1.3 . . .

Suppressed 25.8 . . . . . . 100.0

Adult SSI recipients in household

None 12.4 77.9 . . . . . .

1 adult 66.3 17.2 75.7 75.3

2 or more 21.3 4.9 24.3 24.7

Total 4-month household income a ($)

Less than 5,000 34.4 14.3 32.3 51.5

5,000–7,499 18.1 18.9 19.7 13.8

7,500–9,999 10.4 14.7 11.2 6.1

10,000–14,999 12.5 19.0 12.1 9.5

15,000–19,999 9.0 13.8 8.2 7.9

20,000 or more 15.6 19.2 16.5 11.2

Source: Rupp, Hemmeter, and Davies, in progress

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

14 15 16 17 18 19 20 21 22 23 24 25 26 27

Age

SSA Disability Program Participation of Children Age 13 at Time of Award, 1997 Awardee Cohort

SSI only

DI only

Concurrent

No receipt

Dead

So, what are the best data?

• Depends on your need

• There is a lot out there, but it can be hard to find

• And a lot has yet to be tapped within SSA

• What do we need/want?– Better survey data with larger samples that

identify SSI

– More administrative matches to other programs

Sources for Data

SSA, Office of Research, Evaluation, and Statistics

– http://www.ssa.gov/policy/

http://www.ssa.gov/policy/

Presumed Employability:

What does Research Tell Us?

Does it apply to youth on SSI?Richard Luecking, Ed.D.

Presumed Employability

is a construct in disability

legislationIDEIA

WIA (Rehabilitation Act Amendments)

Ticket to Work

But, how realistic is it? Especially for youth on SSI who have intractably low employment participation?

What We Know

Paid work experiences while in secondary

education is the most compelling predicator

of post-school success (Luecking & Fabian, 2001; Test et

al. , 2009; Carter et al., 2010; Sima, et al. in press)

This finding applies across disabilities,

geography, and economic conditions (Gold, Fabian

& Luecking, 2013)

Also applies to youth on SSI (Fabian, 2007; Fraker, et

al., in review)

How do we know this?

Research from the Center on Transition to Employment for Youth with Disabilities (Sima, et

al., in press; Wehman, et al., in press; Gold, et al., 2013) and other recent research

National Youth Transition Demonstration project (Fraker, et al., in review)

Maryland Seamless Transition Collaborative (Luecking & Luecking, 2014)

Important Implications

Work is both a critical intervention

AND expected outcome

A well defined and delivered

intervention leads to outcomes

Other important factors identified

by research and practice

Youth empowerment

Family support and expectations

Collaboration and service linkages

Address issues of poverty

For youth on SSI: YTD and now PROMISE provide important guidance on structuring intervention

PROMISE and Its Implications

Build in interventions that have proven impact (e.g., Maryland PROMISE)

Work experience and paid work

Assertive case management to address family support and expectations, and youth empowerment

Collaboratively engage partners (schools, VR, DD, MH, etc)

Financial literacy and benefits counseling

Resources

www.transitiontoemployment.org

www.seamlesstransition.org

www.transcen.org

http://www.transitiontoemployment.org/

http://www.seamlesstransition.org/

http://www.transcen.org/

Outcomes for Youth and Young Adults with Intellectual and Developmental

Disabilities, 2000-2010

Jennifer Sullivan Sulewski

Acknowledgements to: Agnes Zalewska

Frank SmithAlberto Migliore

John Butterworth

Background: StateData

Project

Our charge

• Develop a set of indicators of outcomes in 3 domains:

–Education

–Employment

–Economic well being

• Based on existing datasets that are collected annually and available at the state level

Data Sources

• American Community Survey

• RSA-911

• IDEA Indicators

• National Core Indicators

Overall findings

• Youth & young adults with IDD lag behind peers with other disabilities & without disabilities in:

–Educational attainment

–Employment

–earnings

Overall findings

• Trends are similar across groups:

– Increasing percentage with diploma or GED

–Decreasing employment

–Decreasing earnings

Findings: Comparison across groups

0%

20%

40%

60%

80%

100%

Ages 16-21 Ages 22-30

Young people with IDD are less likely to have a high school diploma or GED

No Disability

All Disabilities

Cognitive Disability

CognitiveDisability/SSI

Source: American Community Survey, 2010

0%

20%

40%

60%

80%

100%

Ages 16-21 Ages 22-30

The employment rate is much lower for young

people with IDD

No Disability

All Disabilities


Cognitive Disability/SSI

Source: American Community Survey

$0

$5,000

$10,000

$15,000

$20,000

$25,000

$30,000

Ages 16-21 Ages 22-30

Yearly earnings are lower for youth with IDD,

particularly for 22-30 year olds

No Disability

All Disabilities


Cognitive

Disability/SSI


0

5

10

15

20

25

30

35

40

Ages 16-21 Ages 22-30

The earnings gap partially reflects fewer hours worked

No Disability

All Disabilities


CognitiveDisability/SSI


Findings: Trends

0%

10%

20%

30%

40%

50%

60%

2000 2002 2004 2006 2008* 2010*

Percent with a diploma or GED has increased

across all groupsAges 16-21

No Disability

All Disabilities


Cognitive

Disability/SSI


0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

2000 2002 2004 2006 2008* 2010*

Percent with a diploma or GED has increased

across all groups Ages 22-30

No Disability

All Disabilities


Cognitive

Disability/SSI


0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

2000 2002 2004 2006 2008* 2010*

Employment rate has decreased

Ages 16-21

No Disability

All Disabilities



& receives SSI


0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

2000 2002 2004 2006 2008* 2010*

Employment rate has decreased

Ages 22-30

No Disability

All Disabilities



& receives SSI


0%

20%

40%

60%

80%

100%

16-21 22-30

Decrease in employment rate 2008-2010

No Disability

All Disabilities


Cognitive Disability &

received SSI


0%

20%

40%

60%

80%

100%

2002 2004 2006 2008 2010

Rehabilitation rate shows the same trend

16-21, All Disabilities

16-21, IntellectualDisability

22-30, All Disabilities

22-30, Intellectual

Disability

Source: RSA 911

$0

$1,000

$2,000

$3,000

$4,000

$5,000

$6,000

$7,000

$8,000

$9,000

$10,000

2000 2002 2004 2006 2008*2010*

Inflation-Adjusted Earnings Have Decreased

Ages 18-21

No Disability

All Disabilities


Cognitive

Disability/SSI


$0

$5,000

$10,000

$15,000

$20,000

$25,000

$30,000

$35,000

2000 2002 2004 2006 2008* 2010*

Inflation-Adjusted Earnings Have Decreased

Ages 22-30

No Disability

All Disabilities



& receives SSI


0%

5%

10%

15%

20%

25%

30%

35%

40%

2002 2004 2006 2008 2010

Reliance on personal income as primary

source of support at VR closure decreased from 2002-2010

Ages 16-21, AllDisabilities

Ages 16-21,Intellectual Disability

Ages 22-30, All

Disabilities

Ages 22-30,

Intellectual Disability

Source: RSA 911

0%

5%

10%

15%

20%

25%

30%

35%

40%

45%

2002 2004 2006 2008 2010

While reliance on family increased

Ages 16-21, AllDisabilities

Ages 16-21,Intellectual Disability

Ages 22-30, All

Disabilities

Ages 22-30,

Intellectual Disability

Source: RSA 911

Conclusions: Outcomes for youth

• Youth & young adults with IDD lag behind age peers in several areas

• Percent with degrees increased from 2000-2010, while employment rate & earnings decreased

• Youth and young adults departing VR have become more reliant on family over time

Conclusions:Data limitations

• More sources on employment than education & economic outcomes

• Data sets have differing definitions of disability/IDD

• Lack of IDD system data on youth/young adults

Conclusions:Data limitations

• IDEA : not available by disability type, difficult to access & summarize

• ACS: “Cognitive disability” category is

broader than IDD

• NCI: only 20 states per year average

For more information

• Jennifer Sulewski(617) [email protected]

• www.statedata.info

• National Report on Employment Services and Outcomes, 2012: http://communityinclusion.github.io/book12/

• Trends in Employment Outcomes of Young Adults with Intellectual and Developmental Disabilities, 2004-2011:http://www.statedata.info/datanotes/datanote.php?article_id=376

mailto:[email protected]

http://www.statedata.info

http://communityinclusion.github.io/book12/

http://www.statedata.info/datanotes/datanote.php?article_id=376

Data on Working-Age SSI Recipients

from the National Beneficiary Survey

Gina Livermore


Washington, DC

May 21, 2014

● Review of 40 federal surveys found that a lot of data exists on people with disabilities (including SSI recipients)

– Nearly all federal surveys include some disability measures

– SSI recipients can be identified via income receipt questions in several of the large national surveys

▪ ACS, CPS, SIPP, NHIS

– Administrative data have been linked to a number of national surveys

▪ SSA and CMS data are most common, and both typically allow identification of SSI recipients

Overview of Existing Data on People

with Disabilities

● Small samples limit ability to analyze subgroups, including SSI recipients

● Inadequate longitudinal data – Existing longitudinal data fail to reasonably identify people with

disabilities and do not provide a lifetime perspective on disability

– Particularly scarce on working-age people with disabilities

● Administrative data are difficult to access

● Little data on important disability-related topics– Disability onset and dynamics– Consumption/ finances/expenditures– Transportation– Environmental barriers– Accommodations and community supports– Transitions into/out of programs

Limitations of Existing Data Sources

● Large, nationally-representative survey of SSI and SSDI beneficiaries age 18-64 sponsored by SSA

● Fielded in 2004, 2005, 2006, and 2010

– Plans to field again in 2015, 2017, and 2019

● Primary focus was on employment, but NBS also collected data on other topics

– Personal characteristics, health status, income and health insurance sources, service use, and awareness of SSA work supports

● Filled a significant gap in information about SSI/SSDI beneficiaries

Survey Focused on SSI/SSDI:

National Beneficiary Survey (NBS)

● A large share of SSI recipients have work-related goals and expectations and are engaged in work-related activities

Things We Know about SSI Recipient

Employment from the NBS

Activity % of SSI-only Recipients

Engaged in Activity

Has work goals and/or sees self working in the

next five years

45%

Working at interview 5%

Worked during previous calendar year 8%

Looked for work during past four weeks 6%

Used employment-related services or were

waiting to finish school/training program 28%

Any of the Above 49%

Employment-Related Activities

Source: 2010 National Beneficiary Survey.

Longitudinal Perspective:

2001 SSI Award Cohort, 2001–2007

Source: Ben-Shalom et al. (2012) based

on SSA administrative data.

Work and SSI Payment Suspension/Termination During

First Six Years on the SSI Rolls, 2001 SSI Award Cohort

● SSI recipients experience a variety of barriers to employment


Employment from the NBS (cont.)

Barrier SSI Recipients with Work

Goals Reporting Barrier

All

Did not complete high school or equivalent 53%

Household income below federal poverty level 68%

Reasons for Not Working Among Those Not

Employed at Interview

Health condition prevents work 88%

Cannot find a job for which he/she is qualified 43%

Discouraged by previous work attempts 40%

Workplaces are not accessible 37%

Lacks reliable transportation 33%

Barriers to Employment Among SSI

Recipients with Work Goals/Expectations


● Employed SSI-only recipients work and earn more than SSDI and concurrent beneficiaries


Employment from the NBS (cont.)

Job Characteristic SSDI-only Concurrent SSI-only

Average hours worked/week 18 20 26

Working 35+ hours/week 11% 9% 30%

Average wage/hour $8.80 $6.50 $7.70

Average Monthly Pay $658 $524 $930

Earnings above SGA ($1,000/month) 19% 9% 37%

Job offers health insurance 13% 9% 30%

Very/somewhat satisfied with job 75% 92% 66%

Job Characteristics of Employed

SSI and SSDI Beneficiaries


Note: SGA = Substantial gainful activity.

● We have learned a lot about beneficiary employment experiences from the NBS, but there is still much we do not know:

– Factors important to success and failure

– How some beneficiaries are able to work enough to leave the rolls, and why some return to benefits

● Future NBS rounds will explore these issues further

– Oversample high earners

– New questions will delve deeper into the reasons why employment efforts have succeeded or failed

Conclusions

Gina Livermore




Washington, DC 20002

(202) 264-3462

[email protected]


Contact Information

107

"Fixing a Broken System: What the Experts Say

about Modernizing SSI and Improving Public

Policy for Americans with Disabilities"

Panel 3: Legislative and Policy Barriers and State-Level Innovations

Pathways to CareersCollaboration to Promote Self-Determination and

Mathematica Center for Studying Disability Policy

Roundtable

May 21, 2014

Therese Fimian

Senior Research Manager

Pathways Goal

All youth and adults with significant

disabilities have both an informed

choice of competitive, integrated

employment options across a broad

range of community settings and

access to ongoing career support

Strategic Objectives

Pathways Core Strategies

Multiple Internship Pathways

Develop Customized

Support Plan

Standard 8–12

Week

Internships

Complete

Job

Negotiation

Adapt Job

Description

Adapted 8–12

Week

Internships

Job

Development

Plan

Job Analysis and

Individualized

Employment

Support Plan

Customized/

Hybrid 8-12

Week

Internships

Job

Development

Plan

Finalize

Visual

Resume

Conduct

Employer

Needs

Analysis

Complete Job

Negotiation

Job

Development

Plan

Finalize

Visual

Resume

Finalize Visual

Resume

Establish

Business

Support Team

Self-Employment

Internships

Business

Development

Plan

Update/

Finalize

Vocational

Profile

Job

Development

Update/

Finalize

Vocational

Profile

Update/

Finalize

Vocational

Profile

Develop

Individualized

Internship

Support Plan

Expanded

Discovery

Adapted Internships

Standard Internships

Customized and Hybrid Internships

Self-Employment Internships

Expanded Discovery Discovery is a positive, strengths-focused process that looks at

what a person CAN do, not what they cannot do. It helps us

understand all of the hidden layers due to assumptions and

artificial limitations

Initially, Discovery identifies participant interests, potential

employment contributions and conditions for success. It usually

requires 4 to 6 weeks (20-30 hours)

A Discovery Meeting is held at the end of the initial Discovery

period to identify a prospective paid internship

Expanded discovery uses both the paid internship experiences

and initial employment to help expand the understanding of what

an individual can do

After initial employment, expanded discovery focuses on

sustaining employment and on an individual’s overall career

development

114

Pathways Internships Internship jobs are identified during the Discovery Meeting

and are developed along multiple pathways and across a very

broad range of employment sectors

Internships are provided for 8 to 12 weeks during which time

interns are paid at the federal/state minimum wage

Internship training is provided by Pathways and the employer;

employment supports are provided by Pathways and an

Employment Support Plan for the intern is developed,

implemented and finalized

A “safety net” is provided for interns who wish to change

internships or discontinue Pathways participation

115

Employer Payroll Tax Adjustment (EPTA)

Concept: Pay-as-you-go model that lowers an employer’s Federal payroll tax payment (FICA) based on the direct employment of persons who receive (or have received) federal disability (SSI or SSDI) benefits and directly addresses current need for long-term funding for ongoing employment supports.

Strategy: Employer has 8-12 wks to get to know intern on the job, know cost of intern’s needed employment supports, and know amount of payroll tax reduction the employer would receive annually.

Employer Impact: Upon permanently hiring an intern, an employer receives a simulated FICA tax reduction as long as the individual is employed. In the Utah Pathways model, the per person annual FICA reduction for interns hired as employees is: Employees working 30 or more hours per week (at minimum wage) = $4,500 - $7,000 Employees working 24–29 hours per week (at minimum wage) = $2,000 - $5,000*

Budget Impact: The tax adjustment is budget positive to the Federal treasury in terms of immediate reductions in SSI, SSDI, Medicaid, Medicare and SNAP outlays

*In the model, an amount equal to the FICA tax reduction is being paid to employers for up to 5 years from the date of hire as long as the individual remains employed.

Utah Pathways Overview The Pioneer Adult Rehabilitation Center (PARC) is the lead agency

– part of the Davis County school system

Initial focus on 60 youth and adults living in Davis County, Utah with intellectual and developmental disabilities

Random selection of participants from volunteers recruited from among:

School District special education transition students with the most significant

disabilities

Individuals on the Utah Medicaid waiver waiting list

Facility-based employees of PARC

Zero exclusion model

Initial Discovery

Initial DiscoveryNumber of Participants Selected as of April 2014 35

Number of Participants to be Selected in May 2014 25

Number of Participants Completing Initial Discovery 32

Average Hours of Initial Discovery per Participant

(over 4 – 6 weeks)

22.2

Initial Profile Development 11

Expanded Discovery/Internships

Expanded Discovery/InternshipsTotal Number of Interns to Date 26

Total Number of Internships to Date 34

Average Hours Per Week 22.75

Average Weekly Internship Wage $165

Average Hours Per Week of Staff Support on an

Internship

7.31

Average Per Person Total Hours of Internship

Facilitation

64.5

Internship Facilitator Supports

92.24%

31.26%

19.51%

16.24%

12.15%

7.77%10.39%

6.14% 6.02% 3.95% 4.70% 3.96%0.00%

10.00%

20.00%

30.00%

40.00%

50.00%

60.00%

70.00%

80.00%

90.00%

100.00%

1 2 3 4 5 6 7 8 9 10 11 12

Average Weekly Internship Facilitator Supports

Employment

EmploymentNumber of Jobs Offered 11

Number of Jobs Accepted 8

Employees Offered Healthcare 6

Average Staff Support Hours for Employees

During First 90 Days on the Job

3.25

Average Hourly Wage for Employees $11.40

EPTA Paid to Employer Partners $8092.00

Funding

Expanding the Pathways Model

Modify the design of the employment model in concert with NAMI, to

include participants who are youth and adults with serious mental

illness (SMI) to the population and test the expanded Project model

(FY14)

Begin training and development at 2nd Pathways to Careers site at

Work, Inc., Boston, MA (FY14)

Include staff from JVS-Detroit and Service Source (Fairfax, VA) in

training and planning (FY14)

Finalize project design and launch 2nd site for individuals with SMI

(FY15)

124

Pathways Systems Change Goal

CPSD AND MATHEMATICAMODERNIZING PUBLIC POLICY ON SSI

May 21st, 2014

PANEL 3: LEGISLATIVE AND POLICY BARRIERS

AND STATE-LEVEL INNOVATIONS

Michael Morris

Director, National Disability Institute

[email protected]

Introduction

• FINRA Investor Education Foundation conducted 2009 and 2011 studies

• Assess baseline measure of the financial capability of American adults Cover monthly expenses

Manage credit and debt

Have knowledge for informed decision-making

FINRA Survey Question

• How satisfied are you with your current financial condition?

Financial Capability and Informed Financial Decision-Making

is a Framework to Re-evaluate Current SSI Policy

SSI Minimum Federal Payments

• SSI monthly minimum federal payments

$721/month

$8,657/year

Countable Resources Limit

• The limit for countable resources is $2,000 for an individual and $3,000 for a couple

Current SSI Public Policy

• Live in poverty

• Prohibited from saving

• Highest tax rate on earnings (50%) deduct 50 cents on every dollar you earn after the first $85

• Work incentives utilized by less than 1%

• Representative Payees make the financial decisions

Impact of Income and Asset Disparity

• Learned Helplessness

• Less access to affordable financial services and products

• Poor self concept

• Adverse impact on community participation and inclusion

Solutions at Federal Level

• Link monthly payments to teachable moments: Consumer protection

Money management

Budgeting

Savings strategies

• Include financial capability development as part of individual employment planning IDEA, VR, Ticket to Work, WIA


• Overhaul SSA Work Incentives Simplify and consolidate

PASS Opt Out instead of Opt In

• Modernize Earned Income Tax Credit Lower age from 25 to 18

Increase benefit to single individuals without children

• Raise SSI asset limit to $10,000 with retirement accounts excluded


• Raise expectations concerning work and savings with passage of the ABLE Act

Innovations at State Level

• Integrate financial capability development into social and human service delivery

• Mandate metrics and measurement

• No wrong door approach

• Critical touch points Looking for a job

Getting first paycheck

Working

"Fixing a Broken System: What the Experts Say

about Modernizing SSI and Improving Public

Policy for Americans with Disabilities"

Panel 4: Governmental Structures and Operations that Impede Innovation

Overcoming the Barriers to Progress


Washington, DC

March 4, 2014

Today’s Public Disability Support

System, Simplified

Federal Revenues State Revenues

SSA

HHSDOT HUDED

USDA VR HHS

DOTLaborED

Local Public and

Private Service

Providers

SSA Field Office VR

LTC/HCBS

HousingHealth Services

Taxpayers

People

with

Disabilities

DOL

TransitSNAP

FIT

FICA

SIT, Sales, Property…

Federal and

State

Agencies

TANF

One Stop

Mental

Health

Services

142

Inability to work is the

central eligibility criterion


SSA

HHSDOT HUDED

USDA VR HHS

DOTLaborED

Local Public and

Private Service

Providers

SSA Field Office VR

LTC/HCBS


Taxpayers

People

with

Disabilities

DOL

TransitSNAP

FIT

FICA


Federal and

State

Agencies

TANF

One Stop

Mental

Health

Services

143

The private sector has adapted to the

public support system


SSA

HHSDOT HUDED

USDA VR HHS

DOTLaborED

Local Public and

Private Service

Providers

SSA Field Office VR

LTC/HCBS


Taxpayers

People

with

Disabilities

DOL

TransitSNAP

FIT

FICA


Federal and

State

Agencies

TANF

One Stop

Mental

Health

Services

144

● Federally led initiative

● Major roles for states and the private sector

Overcoming the Barriers

145

● A national goal

– “Employment First” ?

● Federal disability policy board

– Full and transparent accounting

– Measurement of progress

– Monitoring and rapid-cycle evaluation

– Protection for the most vulnerable

– Multi-program waivers

● Parallel state boards

● Independent consumer council

Elements of the Initiative

146

● Generalized Benefit Offset

● CareerACCESS

● One door entry

● Expansion of self-directed services

● Early intervention systems for workers

Potential Waivers

147

David Stapleton




Washington, DC 20002-4221

(202) 484-9220

[email protected]


Contact Information

148

SSI/SSDI Disability System Reforms

CPSD Conference

Fixing a Broken System: Improving Public Policy for Americans with Disabilities

Washington D.C.

May 21, 2014

Perspective on DI System Reform• Basic View

Government programs to provide given level of support to the economically vulnerable must do so at minimum taxpayer cost

• Minimizing taxpayer burdens:– Enable beneficiaries to become independent and self-sufficient…– Mainly by encouraging working and earning whenever possible

• Focus here is programs for non-aged disabled adults– Increasingly difficult to bureaucratically determine links between

Medical impairments functional limitations work incapacity

– Not true that those on disability have zero work capacity• And those with work capacity do wish to work and improve their living standards

– But today’s DI programs incorporate significant work-disincentives (SSAB)

SSI and SSDI Problems• Two programs that can lead to disability payments:

– SSDI for insured workers and – SSI for blind and disabled adults with low income and assets– Both provide a monthly cash benefit

• SSDI work incentives problem: – Poor because of definition of disability and derived eligibility criteria – “Cash cliff” at SGA under/unemployment of work-capable

beneficiaries

• SSI (disabled adult) problem: – No cash cliff but asset and income restrictions act as a work disincentives– Saving out of earnings loss of SSI eligibility = work disincentive– Benefits reduced on a “$1 for $2” basis = 50 percent MTR on earnings– (But note: Many asset and income disregards under current law)

GBO: A New Work Incentive System• Generalized benefit offset: Switch toward paying for work instead of for remaining idle

Work choice is fully voluntary

Safety net is permanently preserved

Trade off TF or GR-funded benefit for a super-EIC

Marginal adjustments based on observed earnings

• SSDI: – GBO calibrated to PIA – a proxy for residual work

capacity

• SSI: – GBO calibrated to maxSSI less unearned income

Example: GBO Calibration for SSDI Only

(PIA equals 2014-SGA: $1,070)

Total transfer (red line) consists of three components:

o Earnings (orange 45 degree line)

o Disability benefit: Declines at a fixed rate with earnings (light blue line)

o Tax/Subsidy component: follows EIC-like design (green line)

• Negative at low earnings level

• Positive for higher earnings and increasing faster than earnings

-1000

0

1000

2000

3000

4000

5000

INC

OM

E

EARNINGS

EARNINGS CURRENT LAW

TF BENEFIT TAX/SUBSIDY

TOTAL INCOME

Under this GBO schedule:• Total transfer is essentially as generous as current law SSI for earnings below maxSSI• Benefit is maximized at 2*maxSSI

-500

0

500

1000

1500

2000

2500

70 210 350 490 630 770 910 1050 1190 1330 1470 1610 1750 1890 2030 2170 2310

INC

OM

E

EARNINGS

GBO Calibration for SSI and Concurrent

EARNINGS CURRENT LAW

TF BENEFIT TAX/SUBSIDY

TOTAL INCOME

Base PIA=2014-SSImax

GBO: Differences Between SSDI and SSI• SSDI:

– GBO Separation of work capable from others on a voluntary basis– Anti gaming: Base benefit reduced to SSDI PIA after 1 year of no work– Easy to administer: Quarterly earnings reports of state UI agencies– Lagged adjustments state orgs to help smooth good-bad labor market

• SSI (not fully committed): – Asset-Limit Buy-Out Program (ALBP) – Increase Asset Limit gradually (by 10 percent?) when earnings N*SSImax

(N 2)• Disregard asset limit after X years of work if savings are in IRA/tax-qualified plan

– Same calibration for GBO as for SSDI?• Base PIA = SSImax minus unearned income• More generous and at higher cost to federal budget compared to current law

– Alternatives:

• Drop GBO for SSI but introduce ALBP only• Re-calibrate (reduce) GBO’s work incentive for SSI

– more generous work incentive for SSDI justified on grounds of prior work history

Building a New Social Contract with Working Age SSI Recipients

CPSD/Mathematica Roundtable

March 4, 2013

Winning Hearts and Minds:

Foundation for Meaningful

Change

My Vision

• A new Social Contract

– Not the abolishment of the Social Contract

– A Social Contract based on respect for Americans with disabilities as citizens who bring equal value to our society

– People must have a right to support that can help overcome disability-related barriers to economic self-sufficiency

My Vision

• A new and better Safety Net

The Safety Net has become

more like a fishing net.

We need a Safety Net that

buoys people up.

History Catching Up With Us

• In the 70’s and 80’s, disability programs like SSDI and SSI were used to help lower unemployment by inducing less healthy workers out of the labor force

• Expected to impact older workers, but US saw 44% increase in those aged 15-44 during the 1980’s

• Disability population (15-44) shot up by 65% between 1990 and 1994.

Source: Burkhauser, R. (1997). The Americans with Disabilities Act: Social Contract or Special Privilege. The Annual of the American Academy of Political and Social Science: 549 Annals 71.

When Was This Written?

• “Until both the disability community and policymakers take the risk of shifting from a disability policy - primarily based on transfer payments to those labeled ‘unable to perform substantial gainful activity’ – to one based on a proposition that people with disabilities can and should be expected to work, a new and growing population of young people with disabilities can look forward to a life of dependency.”

Magnitude of Mindset

Can’t Work

Shouldn’t Be

Expected to Work

Disability Label Creates Entitlement

…But to What?

Policy Outcomes at Individual Level

• Poverty remains a carcinogen, and segregation a cancer…

-Steve Bogira (2012)

• Poverty may be the greatest disability of all

ADA

• Is the ADA a social contract with Americans with disabilities?

• Is economic self-sufficiency an option or an expectation?

• Is equality possible for unemployed Americans?

Investment or Charity Model?

• Today, taxpayers fund roughly 80 different programs at a cost of nearly $1 trillion a year for people who qualify. These include:

• 12 programs providing food aid;12 programs funding social services;12 educational assistance programs;11 housing assistance programs;10 programs providing cash assistance;9 vocational training programs;7 medical assistance programs;3 energy and utility assistance programs; and,3 child care and child development programs.

• How many of the government’s 80-plus programs include a work requirement? Just two.

http://www.heritage.org/research/testimony/2012/05/examining-the-means-tested-welfare-state

Low Expectations

• Regardless of political affiliation, more than 90 percent of individuals say that able-bodiedadults should work or prepare for work as a condition of receiving cash, food, housing or medical care from the government.

• Will disability and inability to work be forever linked in public policy

http://www.heritage.org/research/reports/2012/09/obamas-end-run-on-welfare-reform-part-one-understanding-workfare

Employment First

• Systems other than Social Security changing policy and how public funding is allocated to support “Work First” approach.

• Demonstrating how many people on SSI are capable of gainful employment…and want to be employed

• Will public dollars invested in sustaining people in unemployment ever be an ADA violation?

Work Incentives:Is This the Solution?

Joshua Berezin, World Institute on Disability (2006):

“The persistence of flat employment rates in the face of these solutions shows they are not meeting their objectives.”

“Complex rules can be nearly impossible to explain to someone without years of benefits planning experience.”

If they are nearly impossible to explain, how impossible are they to understand?

Work Incentives:Is the Fundamental Logic

Behind Them Flawed?

“Work first" policy makes far better sense than Social Security policies where workers must demonstrate that they cannot work before being offered incentives to work once they are on SSI or SSDI. (R. Burkhauser, 2013)

Musical Chairs Without the Risk

If I move, I might get to a better chair…

…in this version, there is no requirement to move when the music plays!


Can’t Work

Shouldn’t Be

Expected to Work

Disability Community

Divided

What If…

• What if SSI and SSDI were not programs designed to replace income for those who cannot work?

• What if it were a program designed to temporarily replace income for those who face disability-related barriers to employment while these individuals receive and participate in a set of services designed to overcome these barriers.

Employment Enhancement Program

• No presumption of inability to work

• Presumption that work:• Will take longer to obtain (extended income

replacement benefit available to offset this)

• Will require access to a set of evidence-based disability employment services and related resources

• May require some on-going employment-related supports due to disability

• May require partial income subsidy in short or long term due to disability

What If…

• What if a disability determination was provisional?

• What if long-term income supplement was available on a sliding scale that rewarded work?

• What if partial exit from the rolls was as valued as full exit from the rolls?

A Note on SSDI

• Insurance program

• Workers pay in to ensure coverage if they become disabled

• Some disability advocates flatly reject the expectation that people who qualify for SSDI should be expected to try to return to work

• They say it’s insurance and the premiums have been paid


Can’t Work

Shouldn’t Be

Expected to Work

Disability Community

Divided

Key Features of New Approach

• Provisional determination for most

• Provisional award includes access to a set of employment services reflecting best and evidence-based practice for the disability type

• Transition to employment rewards individual, employment service provider, and employer

• Financial incentive for individual and employer to seek assistance to avoid job termination before it happens (penalty if assistance not sought)

Contact Information

Lisa A. Mills, PhDConsultant on Disability Employment Policy and Systems Change

Moving To A Different Drum, LLC

608.225.4326

[email protected]

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