**National Council on Disability**

An independent federal agency making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families.

# Letter of Transmittal

October 31, 2023

President Joseph R. Biden Jr.

The White House

1600 Pennsylvania Avenue, NW

Washington, DC 20500

Dear Mr. President:

The National Council on Disability (NCD) presents this statutorily required annual Progress Report for 2023—Toward Economic Security: The Impact of Income and Asset Limits on People with Disabilities. As we reflect on a post-pandemic world and recovery from the economic shocks of the past three years, the report examines the impact of social safety net program asset limits on economic independence for working aged people with disabilities. The report focuses on four critical areas of public policy: health care, cash benefits provided through Supplemental Security Income (SSI), employment, and asset building and wealth protection. 

Despite progress toward supporting the economic independence of people with disabilities, securing their financial futures requires significant and immediate federal attention. We look back at NCD’s 25-year ADA anniversary vision and examine the collective progress made toward policy and practice reform in the eight years since. The report makes note of the compounding economic challenges experienced by people with disabilities who live at the intersections of additionally marginalized identities and proposes solutions that attend to these unique needs.

NCD commends the efforts of federal policymakers in safeguarding the economic independence of people with disabilities. We also recognize the contributions of State and local government officials, alongside disability advocates, who champion federal legislation and craft policies that are both equitable and inclusive. A special commendation goes to disability service providers who collaborate effectively, employing practices that bolster the economic empowerment of people with disabilities.

As we move forward, Mr. President, we respectfully ask you and other federal decisionmakers to carefully consider the concerns and recommendations in this report. NCD believes realizing these recommendations will have positive outcomes in the immediate term and for the future, as we eliminate barriers and strengthen programs enhancing the financial posture for people with disabilities.

Respectfully Submitted,

Andrés J. Gallegos, JDChairman

National Council on Disability Members and Staff

**Members**

Andrés J. Gallegos, Chairman

Claudia L. Gordon, Vice Chair

Hoskie Benally, Jr.

Sascha Bittner

Theo W. Braddy

Shawn Kennemer

Risa Jaz Rifkind

Neil Romano

Emily Voorde

**Staff**

Anne C. Sommers McIntosh, Executive Director 

Joan M. Durocher, General Counsel & Director of Policy 

Lisa Grubb, Director of Administration, Finance, and Operations 

Stacey S. Brown, Staff Assistant 

Kimie Eacobacci, Legislative Affairs Specialist 

Netterie Lewis, Administrative Support Specialist 

Amy Nicholas, Senior Attorney Advisor 

Nick Sabula, Public Affairs Specialist 

Amged M. Soliman, Senior Attorney Advisor 

Ana Torres-Davis, Senior Attorney Advisor 

Keith Woods, Financial Management Analyst

Progress Report 2023Toward Economic Security: The Impact of Income and Asset Limits on People with DisabilitiesTable of ContentsAcknowledgments	9Executive Summary	11Acronym Glossary	15Introduction	21Chapter 1: Economic Independence Versus Economic Self-Sufficiency	25Relaxing Versus Eliminating Asset Limits	28The Impact of Benefits Cliffs	29Case Sample: New York Home Care Workers Face a Benefits Cliff	30Promising Practice: Ohio Benefit Bridge Pilot	30Disability, Intersecting Identities, and the Wealth Gap	31Chapter 2: Supplemental Security Income	35Streamlining Applications Processes and Reducing Administrative Burdens for SSI and Other Benefits Programs	36Chapter 3: Health Care	41Affordable Care Act Reform	42Asset and Resource Limit Reform for Medicaid and Medicaid Buy-In	43Further Research into Non-SSI Pathways for Medicaid	45Medicaid in COVID-19 Times	46The Impact of Work Requirements on Health Insurance and Employment	47Work Requirements and Section 1115 Waivers	48Consumer Protections and Medical Debt	48Home and Community-Based Services Waivers	48Expanding Wealth and Access Protection Through HCBS Waivers	51Chapter 4: Employment and the Workforce System	53Workforce Innovation and Opportunity Act	53Transition Age Youth with Disabilities	57Competitive Integrated Employment	60Disability Inclusion for Federal Contractors	65State as Model Employer	67Workplace Access and Accommodations	68Self-Employment and the Gig Economy	69Artificial Intelligence and Technology	70Employment and Health	71Stay at Work/Return to Work	72Work Incentives and Federal Benefits Programs	73Poverty and Disability	74Chapter 5: Asset Building and Wealth Protection	75Asset Limits Deny Access to Wealth Building Programs	76Achieving a Better Life Experience (ABLE) – 529A Plan	76The Cost of Participation	77Factors Influencing Low ABLE Account Uptake	79ABLE Outreach and Education	79Financial Capability Education	81Administrative Burdens and Asset Limits	83ABLE and Retirement Savings	84Special or Supplemental Needs Trust	85Individual Developmental Accounts	86Case Highlight: IDA Demonstration Randomized Evaluations	87Alternative Supports for Asset and Wealth Building	88Tax Code Adjustments	88Guaranteed Basic Income	89Recommendations	91Appendices	99Appendix A: A Look Back at the National Council on Disability’s  25-year Americans with Disabilities Act of 1990 Anniversary Recommendations	99Health Care	99Employment	100Appendix B: Methodology	105Appendix C: Agenda and Attendance for Virtual Stakeholder Meeting	109Appendix D: Discussion Guide  for Policymakers and Advocates	111Endnotes	113

# Acknowledgments

The National Council on Disability thanks National Disability Institute (NDI), particularly Ramonia Rochester, PhD, and her team—Dahlia Shaewitz, MA (Third Sight LLC); Lydia X. Z. Brown, JD; and Marlene Ulisky, AA, CPWIC—for the research conducted in developing this report. Special thanks to Elizabeth Jennings, MAPP; Elizabeth Layman, MPH; Hope Price; and Laurie Schaller, BA, for their editorial contributions to the final report. NCD also thanks the state and local representatives and service providers who discussed the impact and implications of current legislation. 

# 

# Executive Summary

For the past 50 years, since the enactment of the Rehabilitation Act of 1973, the United States has passed numerous legislative and regulatory changes to increase equality of access and opportunity for people with disabilities—including increased economic opportunity and inclusion. The Americans with Disabilities Act of 1990 (ADA) specifically aims to ensure “equality of opportunity, full participation, independent living, and economic self-sufficiency” for people with disabilities. Nonetheless, despite gains in legal protections for inclusion and access, people with disabilities have not achieved economic self-sufficiency or parity with peers without disabilities. People with disabilities are more likely to be poor, unemployed, and dependent on public assistance programs than people without disabilities. These disparities are also greater for people with disabilities experiencing systemic racial and gender-based discrimination. 

In this report, we focus specifically on the impact of asset limits in government-sponsored social safety net programs on the economic self-sufficiency and financial independence of people with disabilities. We focus on implications of asset limits on health- and employment-related outcomes for people with disabilities. Asset limits can prevent lower-income people from building savings and exercising financial autonomy without risking loss of access to necessary public assistance programs. Federal policies and state-administered programs that modify asset limit requirements should support people with disabilities to build assets without jeopardizing their eligibility for public assistance programs that they require to obtain or maintain access to health care or employment. For instance, Congress passed the Achieving a Better Life Experience (ABLE) Act in 2014, which created a pathway for recipients of Supplemental Security Income (SSI) to save some assets without losing access to these benefits, then expanded participation through the ABLE Age Adjustment Act as part of the Omnibus Spending Bill in 2022.

This progress report in part revisits the National Council on Disability (NCD) 2015 statutorily mandated policy progress report and the recommendations regarding health and employment. We focus on the impact of asset limits in Medicaid and SSI cash supplement programs on people with disabilities’ health and employment outcomes. We also examine and analyze the structural and societal factors impacting working-age (18 to 64 years) people with disabilities. Finally, we analyze specific federal and state policies that are now being leveraged or could be leveraged to further NCD’s goals from the 2018–2022 Strategic Plan to address economic independence for people with disabilities, including policies to promote competitive integrated employment, increase access to health insurance and long-term supports, and provide opportunities to build assets and other financial resources. 

Our research methodology in preparing this report included conducting three focus groups with stakeholders in the disability community, including self-advocates, family members, service providers, and policymakers, as well as conducting a systematic review of federal policies and a sample of state policies. 

Key findings in this report include the following:

Although people with disabilities have higher costs of living due to disability-specific expenses and needs, people with disabilities consistently have poorer outcomes for employment, earnings, savings, and overall net wealth. This means that people with disabilities are far less likely to achieve financial security or self-sufficiency. 

Even with many states increasing their minimum wage to account for inflation, people with disabilities are often impacted by benefits cliffs – meaning that they earn higher income than permitted by income or asset limits but not enough to support themselves without access to means-tested benefits. 

Equitable access to health care—including Medicaid insurance programs—improves financial health and increases an individual’s ability to work and achieve economic stability. Access to Medicaid, including Medicaid Buy-In (MBI) programs (available in 48 states), can be a valuable pathway to employment for people with disabilities who depend on Medicaid to cover medical care and support services necessary for people with disabilities to enter or remain in the workforce. 

The 2014 Workforce Innovation and Opportunity Act (WIOA) was intended to improve the national workforce system and promote employment opportunities for people with significant barriers to employment, including workers with disabilities; however, state data submitted to the U.S. Department of Labor (DOL) is insufficient and incomplete. WIOA-supported agency integration efforts such as employment network supports and services provided through the Ticket to Work Program, substantially improves employment outcomes for people with disabilities. 

Among NCD’s recommendations in this report are the following:

Congress should propose and pass legislation to eliminate or modify SSI income and asset rules, including allowing debts to counterbalance assets. Congress should also reduce the reporting burden for disability beneficiaries, and the Social Security Administration (SSA) should simplify the income and resource rules that contribute to overpayments, confusion, and mistrust and increase the administrative burden for workers and the SSA.

Congress should amend Section 1557 of the Affordable Care Act (ACA) to remove asset and resource limits, as well as age limits, for Medicaid and Medicaid Buy-In (MBI) programs. 

Congress should direct Centers for Medicare and Medicaid Services (CMS) to increase funding levels for Medicaid home and community-based services (HCBS) and require automatic HCBS eligibility screening for all Medicaid beneficiaries that includes funding for assistive technology (AT) such as standing wheelchairs, home accessibility, and preauthorization for AT repairs that promote health and greater levels of independence.

The DOL should provide guidance and monitoring to ensure that all WIOA-funded programs such as American Job Centers (AJCs) are accessible to and provide meaningful support for people with disabilities. 

State legislators should enact laws promoting Employment First as a model for competitive integrated employment (CIE), and eliminate subminimum wage and the use of 1099 contractors instead of W2s for employees with disabilities who are not self-employed. State vocational rehabilitation agencies should partner with service provision agencies to provide financial training, including financial literacy and benefits counseling, to people with disabilities. In tandem, more funding should be allocated to Work Incentive Planning and Assistance to ensure access to timely benefits advisement services that encourage people with disabilities to work to their fullest abilities. 

Congress should amend the ABLE Act to allow higher contributions and savings levels for immediate purchases, as well as long-term savings and retirement. 

*All quotations supplied in this report are from the National Council on Disability Listening Sessions hosted as part of the data collection exercise and represent the views of various stakeholders from the disability community. All quotations are published under an agreement of anonymity.*

# Acronym Glossary 

ABLE		Achieving a Better Life Experience (Act or account)

ACA		Affordable Care Act

ACF		Administration for Children and Families

ACL 		Administration for Community Living

ACS 		American Community Survey

ADA 		Americans with Disabilities Act of 1990

ADRC		Aging and Disability Resource Center

AFIA		Assets for Independence Act

AI		Artificial Intelligence

AJC		American Job Center

ALICE		Asset Limited, Income Constrained, Employed

AMT		Asset Means-Test

ARPA		American Rescue Plan Act

ASAP		Aging Services Access Points

AT		Assistive Technology 

BHP		Basic Health Program

BOP		Federal Bureau of Prisons

BWE		Blind Work Expense

CHIP		Children’s Health Insurance Program

CIE		Competitive Integrated Employment

CMR		Code of Massachusetts Regulations

CMS		Centers for Medicare and Medicaid Services

COVID-19	Coronavirus Disease

CPWIC	Community Partner Work Incentives Counselor

CSA		Child Savings Account

CWIC		Community Work Incentives Coordinator

DARS		Department of Aging and Rehabilitative Services (Virginia)

DDS		Disability Determination Services

DEI		Diversity, Equity, and Inclusion

DETC		Disability Employment Tax Credit

DHHS		Department of Health and Human Services

DIF		Disability Innovation Fund

DME		Durable Medical Equipment

DOL		Department of Labor

ED		Department of Education

EEOC		Equal Employment Opportunity Commission

ELFA		Education, Labor, and Family Assistance

EO		Executive Order

EPSDT	Early and Periodic Screening, Diagnostic, and Treatment

ERG		Employee Resource Group

ETA		Employment and Training Administration

FBR		Federal Benefit Rate

FLSA		Fair Labor Standards Act of 1938

FPL		Federal Poverty Level

GAO		Government Accountability Office

GBI		Guaranteed Basic Income

H.B.		House Bill (state)

HCBS		Home and Community-Based Services

HIMDE	Health Insurance-Motivated Disability Enrollment 

H.R.		House of Representatives (bill)

HRSA		Health Resources and Services Administration

HRSN		Health-Related Social Needs

ICP		Individualized Career Plan

IDA		Individual Development Account

I/DD		Intellectual or Developmental Disability

IDEA		Individuals with Disabilities Education Act

IEP		Individualized Education Program

IRS		Internal Revenue Service

LIHEAP	Low-Income Home Energy Assistance Program 

LTC		Long-Term Care

LTSS		Long-Term Services and Supports

MAGI		Modified Adjusted Gross Income

MBI		Medicaid Buy-In

MDE		Michigan Department of Education

MEC		MassHealth (Medicaid) Enrollment Center

MMC		Michigan Merit Curriculum

MOU		Memoranda of Understanding

MSP		Medicare Savings Program

MSRB		Municipal Securities Rulemaking Board

NCD		National Council on Disability

NDBC		National Business & Disability Council

NDI		National Disability Institute

NTAC		National Technical Assistance Center

NWD		No Wrong Door

OA		Office of Apprenticeship

OBRA-93	Omnibus Budget and Reconciliation Act of 1993

OCTAE	Office of Career, Technical, and Adult Education

ODEP		Office of Disability Employment Policy

OFCCP	Office of Federal Contract Compliance Programs

OSY		Out of School Youth

PACE		Program of All-Inclusive Care for the Elderly

PASS		Plan to Achieve Self Support

PETI		Post-eligibility Treatment of Income

PHE		Public Health Emergencies

PRC		Prevention, Retention, and Contingency

Pre-ETS	Pre-Employment and Transition Services

PSA		Public Service Announcement

PwC		PricewaterhouseCoopers

PWD		 Population with disability

PY		Program Year

QDE		Qualified Disability Expense

RA		Registered Apprenticeship

RR		Rapid Review

RSA		Rehabilitation Services Administration

S.		Senate Bill

SAA		State Apprenticeship Agency

SAW/RTW	Stay at Work/Return to Work

SBA		Small Business Administration

SEC		Securities Exchange Commission

SGA		Substantial Gainful Activity

SHRM		Society for Human Resource Management

SIPP		Survey of Income and Program Participation

SLDS		State Longitudinal Data Systems

SNAP		Supplemental Nutrition Assistance Program

SNT		Special Needs Trusts

SPA		State Plan Amendment Template

SSA		Social Security Administration

SSDI		Social Security Disability Insurance

SSI		Supplemental Security Income

SVRA		State Vocational Rehabilitation Agency

SWC		Special Wage Certificates

TANF		Temporary Assistance for Needy Families

TCIEA		Transformation to Competitive Integrated Employment Act

TESS		Transition to Economic Self-Sufficiency

TTW		Ticket to Work

TWP		Trial Work Period

USDT		Department of the Treasury

VHA		Veterans Health Administration

VR		Vocational Rehabilitation

WDB		Workforce Development Board

WIB		Workforce Investment Board

WIOA		Workforce Innovation and Opportunity Act

WISA		Work Incentives Specialist Advocate

WOTC	Work Opportunity Tax Credit

WWRC	Wilson Workforce and Rehabilitation Center

# Introduction

The Americans with Disabilities Act of 1990 (ADA) aims to ensure “equality of opportunity, full participation, independent living, and economic self-sufficiency” for people with disabilities by ensuring meaningful, sustainable, and accessible outreach to full and equal inclusion in the economic mainstream and in communities.[endnoteRef:2],[endnoteRef:3] Although many physical and other barriers to equal participation in daily life have been torn down, one critical goal, economic self-sufficiency, remains unfulfilled; most people with disabilities remain significantly poorer than comparable people without disabilities. Though many regard economic self-sufficiency for people with disabilities as receiving insufficient attention, its relationship to public dependency is well documented. [2:  “Americans with Disabilities Act of 1990, As Amended,” U.S. Department of Justice, Civil Rights Division, https://www.ada.gov/law-and-regs/ada/.]  [3:  “The Americans with Disabilities Act Amendments Act of 2008,” U.S. Equal Employment Opportunity Commission, https://www.eeoc.gov/statutes/americans-disabilities-act-amendments-act-2008#:~:text=The%20Act%20emphasizes%20that%20the,shall%20not%20require%20extensive%20analysis.] 

Many voices have called for a reform in government-sponsored social safety net programs. There is substantial evidence that federal asset and resource limits hinder economic security by “penalizing low-income people for accumulating savings and wealth.”[endnoteRef:4] Modifying or eliminating asset and resource limits would encourage economic self-sufficiency. Federal policies and state-administered programs such as the Achieving a Better Life Experience Act show promise for assisting people with disabilities to save (via tax-advantaged special accounts), without risking eligibility for federally funded public support programs, including Medicaid health insurance, Supplemental Security Income (SSI) cash assistance, Temporary Assistance for Needy Families (TANF), Supplemental Nutrition Assistance Program (SNAP), and other means-tested benefits programs.  [4:  Azza Altiraifi, “Advancing Economic Security for People with Disabilities,” Center for American Progress, July 26, 2019, https://www.americanprogress.org/article/advancing-economic-security-people-disabilities/.] 

For the purposes of this project, we focus on Medicaid and SSI cash payment programs. This report discusses the implementation of federal safety net program asset and resource limits that affect employment and health outcomes for people with disabilities. The report also highlights factors that impact the economic independence of working-age individuals (18 to 64 years) receiving social safety net benefits.

People with a range of disabilities have long experienced significant earnings, income, wealth, and employment disparities compared with those without disabilities. The sharpest disparities appear at the nexus of disability and other marginalized identities and ableist experiences, such as for women, people of color, and LGBTQ people.[endnoteRef:5] Recent research and experience demonstrate that a number of these disparities are related to financial inclusion, poverty, employment and earnings, entrepreneurship, and the extra cost of living with disabilities.  [5:  Nanette Goodman, Michael Morris, Kelvin Boston, “Financial Inequality: Disability, Race and Poverty in America,” National Disability Institute, February 2019, https://www.nationaldisabilityinstitute.org/wp-content/uploads/2019/02/disability-race-poverty-in-america.pdf.] 

Despite post-pandemic declining economic conditions signaled by the increase in inflation and the cost of living and a decrease in purchasing power for people with disabilities, asset and resource limits remain in place that were established in the 1970s. For SSI benefits based on disability or blindness, the countable resource limit is $2,000 for individuals and $3,000 for couples.[endnoteRef:6] This resource limit has not been increased since 1989 and the disregards for earned and unearned income ($65 and $20 per month, respectively) have not been changed since the program’s inception.[endnoteRef:7] The resource limit includes assets, which are liquid resources (cash, stocks, and government bonds) and nonliquid resources (items not convertible to cash in 20 working days), certain property (exclusions include primary home or primary transportation, etc.), and life insurance policies. About 72 percent of applicants aged 18 to 64 (and 88% of all applicants) are denied eligibility for SSI benefits annually.[endnoteRef:8] The most common nonmedical reason for SSI benefits denials is due to exceeding the low-income limit. Though many appeal this process, wait times are often a year or longer, with a heightened risk of worsening medical and financial conditions for applicants with disabilities. According to the U.S. Government Accountability Office (GAO), between 2014 and 2019, roughly 48,000 applicants filed bankruptcy while awaiting a final decision, and 109,725 died before receiving a final decision on their disability appeals.[endnoteRef:9] Between 2010 and 2021, Disability Determination Services (DDS) staff decreased by as much as 49 percent across states.[endnoteRef:10] [6:  “SSI Spotlight on Resources – 2023 Edition,” U.S. Social Security Administration, https://www.ssa.gov/ssi/spotlights/spot-resources.htm#:~:text=To%20get%20SSI%2C%20your%20countable,you%20own%20do%20not%20count.]  [7:  Kathleen Romig and Sam Washington, “Policymakers Should Expand and Simplify Supplemental Security Income,” Center on Budget and Policy Priorities, May 4, 2022, https://www.cbpp.org/research/social-security/policymakers-should-expand-and-simplify-supplemental-security-income#_ftn13. ]  [8:  “SSI Annual Statistical Report, 2021,” U.S. Social Security Administration, https://www.ssa.gov/policy/docs/statcomps/ssi_asr/2021/sect10.html.]  [9:  U.S. Government Accountability Office, “Social Security Disability: Information on Wait Times, Bankruptcies, and Deaths Among Applicants Who Appealed Benefit Denials,” August 13, 2020, https://www.gao.gov/products/gao-20-641r.]  [10:  Kathleen Romig, “Social Security Administration Cuts Hurt Every State,” Center on Budget and Policy Priorities, May 26, 2022, https://www.cbpp.org/research/social-security/social-security-administration-cuts-hurt-every-state.] 

Since the onset of the COVID-19 pandemic in 2020, people with disabilities have continued to experience significant disparities in employment status, earnings, and access to public benefits. People with disabilities experienced layoffs, income disruption or loss, and increased medical costs. Others faced immediate threats to quality of life and ability to maintain their independence, including reduced employment or unemployment due to a shrinking job market (caused by mass death, disablement, and complications due to COVID-19) and unprecedented impacts to the personal care attendant industry and other direct support services professionals. Still other people with disabilities remained employed in and unable to leave high-risk jobs with both heightened threat of disease transmission and increased risks of severe complications, illness, or death due to their underlying conditions. Even though employment rates for people with disabilities recovered and even increased post-pandemic, the unemployment rate for people with disabilities is still almost twice that of people without disabilities (7.6% versus 3.5%).[endnoteRef:11] [11:  “Persons with a Disability: Labor Force Characteristics Summary – 2022,” U.S. Department of Labor, February 23, 2023, https://www.bls.gov/news.release/disabl.nr0.htm#:~:text=Unemployment%20The%20unemployment%20rate%20for,points%20from%20the%20previous%20year.] 

The National Council on Disability Strategic Plan 2018–2022, Goal 2, notes the importance of continuous review and evaluation of policies, programs, practices, and procedures concerning people with disabilities.[endnoteRef:12] There are several federal policies that focus on strategies for addressing economic independence for working-age adults with disabilities. These policies range from promoting employment, to expanding opportunities to maintain government-sponsored health insurance, to providing opportunities to accumulate assets and other financial resources. Nonetheless, asset limits steer people with disabilities to seek employment opportunities that limit income to not jeopardize public benefits. Limited income means limited opportunities to establish financial independence, which ensures many remain poor with limited opportunities for community participation, and some remain fully dependent on public financial assistance.  [12:  National Council on Disability, “NCD Strategic Plan FY 2021–2022,” 2018, https://www.ncd.gov/Accountability/strategicplan.] 

Examples of key policies and practices that seek to address the economic realities of working-age adults with disabilities include those related to expansion of access to comprehensive and affordable health care, workplace supports and services, Medicaid Buy-In (MBI) programs, tax reform, and temporary private disability insurance funding supports (e.g., for accommodations, rehabilitation, employer training opportunities). Several of these, including SSI, Medicaid and MBI, the Achieving a Better Life Experience (ABLE) Act and ABLE Adjustment Act, and Employment First, are reviewed.

The ensuing report will explore whether asset limits preclude economic independence for Americans with disabilities through the followings points of research discussion: (1) What public benefits policy reforms encourage greater levels of economic independence for people with disabilities? (2) How do asset limits establish barriers to financial inclusion for people with disabilities? And (3) How do current asset limits for SSI and Medicaid affect competitive integrated employment outcomes for people with disabilities? 

Research activities conducted in exploring the research questions included three (3) virtual Listening Sessions with individuals across the national disability community, including policymakers, service providers, people with disabilities and family, youth with disabilities, and small business owners and self-employed people with disabilities. Three stakeholder groupings participated in separate sessions: (1) policymakers and advocates at the federal and state levels, (2) service providers and advocates, and (3) people with disabilities, including family members and transitioning youth. A Rapid Systematic Review methodology, employing the Cochrane Rapid Review (RR) method, was used to examine a sample of health, employment, and asset limit policies at federal and state levels (sample states included the Commonwealth of Massachusetts, Michigan, Mississippi, Oregon, and the Commonwealth of Virginia). Reflexive thematic analysis was applied to Listening Session data transcripts and to the review of the policy documents. (See Appendix A for a more extensive overview of the study methodology.)

# Chapter 1: Economic Independence Versus Economic Self-Sufficiency

Economic independence is the minimum net income an individual needs to subsist. For many people with disabilities, achieving economic independence requires various types of supports to meet special needs, opportunities to find employment, and having sufficient income to sustain their livelihood.[endnoteRef:13] Under the Social Security Act 45 CFR § 400.2[endnoteRef:14] Refugee Resettlement Program, economic self-sufficiency is defined as earning enough income to support a family (or individual) without cash assistance (such as assistance to refugees, including TANF, SSI, refugee cash assistance, and general assistance under Title IV of the Act).[endnoteRef:15] In 2019, about 41 percent (3.4 million) working-age Medicaid beneficiaries with disabilities also received SSI cash benefits.[endnoteRef:16] [13:  Jon Olav Myklebust and Finn Ove Båtevik, “Special Needs Provision and Economic Independence Among Young Adults with Disabilities: A Longitudinal Study, European Journal of Special Needs Education 37, no. 5 (2022): 715–728. (2022), https://doi.org/10.1080/08856257.2021.1974552.]  [14:  U.S. Law Cornell University, “45 CFR § 400.2 – Definitions. Electronic Code of Federal Regulations (e-CFR),” Legal Information Institute, https://www.law.cornell.edu/cfr/text/45/400.2.]  [15:  Cornell University, “Definition: Cash Assistance from 45 CFR § 400.2,” Legal Information Institute, https://www.law.cornell.edu/definitions/index.php?width=840&height=800&iframe=true&def_id=17a048606a69402a2c6739351d9fc39b&term_occur=999&term_src=Title:45:Subtitle:B:Chapter:IV:Part:400:Subpart:A:400.2.]  [16:  MaryBeth Musumeci and Kendal Orgera, “Supplemental Security Income for People with Disabilities: Implications for Medicaid, Kaiser Family Foundation,” June 23, 2021, https://www.kff.org/medicaid/issue-brief/supplemental-security-income-for-people-with-disabilities-implications-for-medicaid/Notes: Based on SSA 2021 Annual Statistical Report – Table 15. Recipients of Social Security, SSI, or Both, available at https://www.ssa.gov/policy/docs/statcomps/ssi_asr/.] 

Economic self-sufficiency for people with disabilities is distinctly different from that for people without disabilities. A person with a disability requires greater financial support for health care (durable medical equipment [DME], personal care assistance, hearing assistive technology, food that meets special dietary needs), transportation (accessible vehicles, specialized transportation), accessible housing (home ramps, smart home devices), adjustable clothing, and assistive technology (screen reader software, telecommunication devices for the Deaf and Hard of Hearing).[endnoteRef:17],[endnoteRef:18],[endnoteRef:19] In other words, the costs associated with living with a disability require higher earnings and more financial support than prevailing earnings standards and poverty levels. Government and other public resources are vital to ensure that families with disabilities (children, working-age adults, seniors) can offset these additional costs to reach and maintain economic self-sufficiency.  [17:  Diana Pearce, “Disability and Self-Sufficiency: Estimating the Extra Costs of Disability Required to Achieve a Self-Sufficiency Standard of Living,” Legal Services New Jersey, Seattle, WA: University of Washington, December 2011.]  [18:  Michelle Yin et al., “A Hidden Market: The Purchasing Power of Working-Age Adults with Disabilities,” Washington, DC: American Institutes for Research, April 2018.]  [19:  Nanette Goodman et al., “The Extra Costs of Living with a Disability in the U.S. – Resetting the Policy Table,” Washington, DC: National Disability Institute, October 2020, https://www.nationaldisabilityinstitute.org/reports/extra-costs-living-with-disability/.] 

Though the Transformation to Competitive Integrated Employment Act – S. 3238/ H.R. 2373 (TCIEA) introduced in the House of Representatives in April 2021 may not come to fruition, the bill holds promise for advancing competitive integrated employment (CIE) for people with disabilities, including receiving home and community-based services (HCBS), among other provisions. The Act would help eradicate subminimum wage for people with disabilities through stipulations that states discontinue the issuance of Special Wage Certificates (SWC), create a grant program to assist states and 14(c) certificate holders to transition to CIE. This includes creating technical assistance centers to disseminate best practices and evaluate and report employer progress toward transition to CIE; and would sunset Section 14(c) five years post-enactment of the TCIEA.

Notwithstanding this policy opportunity, the road to economic independence continues to prove arduous for people with disabilities due to several factors. Economic independence for people with disabilities means having opportunities to work and pursue career paths that provide competitive wages. However, long-standing policy barriers prevent or disincentivize work through stigma and limited expectations for people with disabilities in education, employment, and community engagement. In tandem, limited income and asset-building opportunities and Medicaid estate recovery programs precipitate barriers to achieving and maintaining generational wealth and economic independence.[endnoteRef:20]  [20:  Nanette Goodman, Michael Morris, and Kelvin Boston, “Financial Inequality: Disability, Race and Poverty in America,” Washington, DC: National Disability Institute, https://www.nationaldisabilityinstitute.org/wp-content/uploads/2019/02/disability-race-poverty-in-america.pdf.] 

In 2020, people with disabilities who worked were paid, on average, 74 cents for every dollar paid to peers without disabilities.[endnoteRef:21] This is the legacy of Section 14(c) of the Fair Labor Standards Act of 1938 (FLSA), which grants employers the option to pay people with a disability at subminimum wage rates (after receiving a certificate from the Wage and Hour Division).[endnoteRef:22] Barriers to competitive integrated employment are further exacerbated by intersectional characteristics such as race and disability. Compounded systemic racism and ableism means that people of color, women, and incarcerated people with disabilities face greater economic hardships and poverty at higher rates than White people with disabilities.[endnoteRef:23] Incarcerated people are three times more likely to report having a disability compared with the general population, with nearly 50 percent of incarcerated women in state and federal prisons in 2016 had disabilities.[endnoteRef:24] [21:  Rebecca Vallas, Kimberly Knackstedt, and Vilissa Thompson, “7 Facts About the Economic Crisis Facing People with Disabilities in the United States,” Century Foundation, April 12, 2022, https://tcf.org/content/commentary/7-facts-about-the-economic-crisis-facing-people-with-disabilities-in-the-united-states/?gclid=CjwKCAjwrdmhBhBBEiwA4Hx5g13Rrl0JydVKBpxmNCr_RCgXazgOtCUQAUnolO2aSRkhvesOmWtp4xoCjMUQAvD_BwE.]  [22:  U.S. Department of Labor, “Subminimum Wage," https://www.dol.gov/agencies/whd/special-employment#:~:text=Employment%20of%20Workers%20with%20Disabilities%3A%20Section%2014(c)%20of,for%20the%20work%20being%20performed.]  [23:  Rebecca Vallas et al., “7 Facts About the Economic Crisis Facing People with Disabilities in the United States,” Century Foundation, April 12, 2022, https://tcf.org/content/commentary/7-facts-about-the-economic-crisis-facing-people-with-disabilities-in-the-united-states/?gclid=CjwKCAjwrdmhBhBBEiwA4Hx5g13Rrl0JydVKBpxmNCr_RCgXazgOtCUQAUnolO2aSRkhvesOmWtp4xoCjMUQAvD_BwE.]  [24:  Rebecca Vallas et al., “7 Facts About the Economic Crisis Facing People with Disabilities in the United States,” Century Foundation, April 12, 2022, https://tcf.org/content/commentary/7-facts-about-the-economic-crisis-facing-people-with-disabilities-in-the-united-states/?gclid=CjwKCAjwrdmhBhBBEiwA4Hx5g13Rrl0JydVKBpxmNCr_RCgXazgOtCUQAUnolO2aSRkhvesOmWtp4xoCjMUQAvD_BwE.] 

Even with current federal, state, and local policies in place to support people with disabilities, working-age adults with disabilities remain employed at less than half the rate of people without disabilities and are twice as likely to live in poverty. Census data from 2021 shows that people with disabilities are 1.7 times more likely to live in poverty than people without disabilities; 20.1 percent versus 11.6 percent, respectively, have incomes below the poverty line.[endnoteRef:25] Working-age (18 to 64 years) people with disabilities are 2.5 times more likely to live in poverty—25 percent versus 10.3 percent.[endnoteRef:26] People with disabilities are three times less likely to be employed (21.3%) compared with people without disabilities (65.4%), with the unemployment rate for people with disabilities about double that of people without disabilities.[endnoteRef:27] Black and Latinx people with disabilities both have higher unemployment rates than White and Asian people with disabilities.[endnoteRef:28] [25:  U.S. Census Bureau, “American Community Survey, ACS 5-Year Estimates – S1703 Selected Characteristics of People at Specified Levels of Poverty in the Past 12 Months,” 2021, https://data.census.gov/table?q=Official+Poverty+Measure&t=Disability:Race+and+Ethnicity&tid=ACSST5Y2021.S1703.]  [26:  U.S. Census Bureau, “American Community Survey, ACS 5-Year Estimates – C18130 Age by Disability Status by Poverty Status,” 2021, https://data.census.gov/table?t=Disability&tid=ACSST5Y2021.S1811.]  [27:  U.S. Bureau of Labor Statistics, “Persons with a Disability: Labor Force Characteristics Summary,” February 23, 2023, https://www.bls.gov/news.release/disabl.nr0.htm.]  [28:  Notes: These numbers are not further disaggregated by specific ethnicity or racial subcategories.] 

Policy Reform Example: Massachusetts Universal Health Coverage[endnoteRef:29]  [29:  “Health Care Reform for Individuals,” Commonwealth of Massachusetts, March 28, 2023, https://www.mass.gov/info-details/health-care-reform-for-individuals.] 

Massachusetts instituted health care reforms to achieve universal health coverage (in 2006, predating the Affordable Care Act), via Chapter 58 – An Act Providing Access to Affordable, Quality, Accountable, Health Care, which increased health care coverage. 

People with disabilities living below the federal poverty line, as well as those above this level, benefit from stronger financial outcomes that result from continued health care coverage. Health care coverage ensures that people with and without disabilities are not negatively impacted by financial challenges including medical costs and medical debt. Unfortunately, tying income and asset limits to eligibility for health care and medical insurance coverage via Medicaid imposes limitations that force people with disabilities to choose between working at levels that allow them to maintain health care benefits that may include long-term services and supports (LTSS), or risk losing access to health care when employed at higher levels. As a result, people with disabilities (16 to 64 years) are participating in the workforce at much lower rates (34.8 %) than people without disabilities (74.4%).[endnoteRef:30] [30:  Bureau of Labor Statistics, “Persons with a Disability: Labor Force Characteristics – 2022,” February 23, 2023, https://www.bls.gov/news.release/pdf/disabl.pdf.] 

The road to economic self-sufficiency for people with disabilities must include policies, practices, and evidence-based strategies that combine support for employment and secure health care benefits. While SSI and Medicaid work in tandem to support people with disabilities who are living in poverty, they also serve as potential barriers in part due to laborious administrative processes and stringent asset limits. Opportunities to address these challenges through programs such as the MBI program and Ticket to Work (TTW) assume that working and nonworking people with disabilities are aware of these programs, and understand how these programs work, how to engage with them, and how programs may benefit them over time. Work incentives and opportunities to work must be established independent of requirements for health care benefits, which are vital to families with disabilities. 

## Relaxing Versus Eliminating Asset Limits

Several factors affect the economic independence of people with disabilities: severity and type of disability, current and long-term expenditures, living arrangements, work status, and public resources and supports. One in four Americans with disabilities faces challenges in securing gainful employment and establishing financial security.[endnoteRef:31],[endnoteRef:32] Several studies point to the benefits of raising or eliminating asset limits to encourage saving and economic independence, enhance education and employment, and lower public program administrative costs.[endnoteRef:33],[endnoteRef:34]  [31:  Catherine A. Okoro et al., “Prevalence of Disabilities and Health Care Access by Status and Type Among Adults – United States, 2016,” Morbidity and Mortality Weekly Report 67, no. 32 (2018): 882–887, https://www.cdc.gov/mmwr/volumes/67/wr/mm6732a3.htm?s_cid=mm6732a3_w.]  [32:  Catherine A. Okoro et al., “Prevalence of Disabilities and Health Care Access by Status and Type Among Adults – United States, 2016,” Morbidity and Mortality Weekly Report 67 (32) (2018): 882–887, https://www.cdc.gov/mmwr/volumes/67/wr/mm6732a3.htm?s_cid=mm6732a3_w.]  [33:  Aleta Sprague and Rachel Black, “State Asset Limit Reforms and Implications for Federal Policy,” Washington, DC: New America Foundation, 2012, https://static.newamerica.org/attachments/3826-state-asset-limit-reforms-and-implications-for-federal-policy/SpragueBlackFinal10.31.12_0.557490fb36df433a80bd5cb2f3885e5d.pdf.]  [34:  Caroline Ratcliffe et al., “Asset Limits, SNAP Participation, and Financial Stability,” Washington, DC: Urban Institute, June 2016, https://www.urban.org/research/publication/asset-limits-snap-participation-and-financial-stability.] 

Many states have eliminated asset means-tests (AMTs) for several public benefits programs, despite arguments that AMTs ensure benefits are supplied to households with the most need. AMTs make households’ financial assets an important factor in employment choices.[endnoteRef:35] Across SSI beneficiaries, 74 percent of unemployed, nonretiree households have less than $3,000 in financial assets.[endnoteRef:36] Disability, unemployment risk, job loss or lack of jobs, and labor force shocks, including changes in the demand and value of certain skills (earnings risks), may leave households economically insecure. People who incur disabilities that limit their ability to work may spend down their financial assets to qualify for public benefits programs such as Medicaid long-term services and supports.[endnoteRef:37] [35:  Felix Wellschmied, “The Welfare Effects of Asset Mean-Testing Income Support,” Quantitative Economics 12, no. 1 (2021): 217–249, https://www.econometricsociety.org/publications/quantitative-economics/2021/01/01/The-welfare-effects-of-asset-meantesting-income-support.]  [36:  Felix Wellschmied, “The Welfare Effects of Asset Mean-Testing Income Support,” Quantitative Economics 12, no. 1 (2021): 217–249, https://www.econometricsociety.org/publications/quantitative-economics/2021/01/01/The-welfare-effects-of-asset-meantesting-income-support.]  [37:  “How Medicaid Spend Down Works: Rules, Exemptions and Strategies,” American Council on Aging, last updated December 14, 2022, https://www.medicaidplanningassistance.org/medicaid-spend-down/.] 

Though there may be drawbacks to less stringent asset tests, including more households qualifying for benefits, the converse also means fewer benefits will be available for each household.[endnoteRef:38] Econometric studies show that the impact of removing AMTs from public benefits programs results in several benefits. Some of the benefits of removing AMTs include: (1) median financial assets for households within the lowest income brackets ($1,991 to $9,072) increases; (2) the number of working-age households entering nonemployment (such as retirement) with less than $3,000 in financial wealth decreases from 34 percent to 15 percent; and (3) financial assets increase for low-income senior households.[endnoteRef:39]  [38:  Felix Wellschmied, “The Welfare Effects of Asset Mean-Testing Income Support,” Quantitative Economics 12, no. 1 (2021): 217–249, https://www.econometricsociety.org/publications/quantitative-economics/2021/01/01/The-welfare-effects-of-asset-meantesting-income-support.]  [39:  Felix Wellschmied, “The Welfare Effects of Asset Mean-Testing Income Support,” Quantitative Economics 12, no. 1 (2021): 217–249, https://www.econometricsociety.org/publications/quantitative-economics/2021/01/01/The-welfare-effects-of-asset-meantesting-income-support.] 

## The Impact of Benefits Cliffs

Benefits cliffs occur when an increase in employment and earnings results in benefits recipients surpassing the threshold, though they do not make enough money to sustain themselves without public funds. People sometimes face the jeopardy of losing benefits because of state legislative action, such as increases in minimum wage. Twenty-nine states plus the District of Columbia have minimum wages above the federal limit of $7.25, and minimum wage is indexed for inflation in 19 states, including, New York, Oregon, and Virginia.[endnoteRef:40] Access to a living wage, affordable health care, and supports for daily living position workers to maximize opportunities for employment, contribute to social welfare systems via income taxes, accumulate assets, meet their long-term needs for savings and retirement, and potentially leave legacies of intergenerational wealth. [40:  The Economic Policy Institute, “Minimum Wage Tracker,” March 1, 2023, https://www.epi.org/minimum-wage-tracker/.] 

Though minimum wage increases are necessary, considering prevailing economic conditions, these increases do not always benefit people with disabilities and are wholly ineffective for workers engaged in subminimum wage jobs. On the other hand, public benefits program income and asset limits are not indexed to inflation. As a result, disparities between minimum wage indexing and consistently low income and asset limits sometimes result in individuals losing essential public income and health insurance. These individuals cannot subsist on their earnings due to the added costs of living with disabilities, yet risk furthering their ineligibility for public benefits if they work more hours and/or earn more money. Relaxing asset limits may alleviate the immediate risk of losing benefits but does not address the long-term inability to establish economic independence by maintaining critical benefits and a level of employment that facilitates saving and asset building. 

## Case Sample: New York Home Care Workers Face a Benefits Cliff[endnoteRef:41] [41:  Julianna Samper, Adam Hartmannn, and Amelia Josephson, “Brief. The Benefits Cliff Dilemma: Navigating Wage Increases and Public Benefits,” Financial Health Network, April 2023, https://finhealthnetwork.org/research/the-benefits-cliff-dilemma-navigating-wage-increases-and-public-benefits/.] 

Per the New York State FY24 Executive Budget (Education, Labor and Family Assistance – S4006C (ELFA) Bill Part S), the state’s minimum wage levels will be indexed to inflation, starting in 2024 (subject to a 3% cap and off ramps to be assessed based on economic conditions). The state of New York increased its minimum wage for home care aides by $2 to $17 as of October 2022, and is scheduled to further increase it by $1 come October 2023. Findings from a small sample study with home care workers in the state note that 9 of 11 participants were not aware that changes in their income could result in immediate losses of benefits. Workers discussed several frustrations with the benefits cliff, including needing to work fewer hours in order not to lose $300 per month in SNAP benefits that they have received for 3 years; others are attempting to navigate a potential loss of benefits including opportunities to increase work hours. The study notes that most individuals are not aware of the concept of a benefits cliff or that they may be facing one, until they lose essential benefits. The only recourse for many workers is to reduce or reject work hours. This exacerbates a growing caregiver shortage for home care and disability services.

## Promising Practice: Ohio Benefit Bridge Pilot[endnoteRef:42]  [42:  Emily Campbell, “Policy Change Can Reduce Benefit Cliffs and Incentivize Work,” The Center for Community Solutions, February 22, 2022, https://www.communitysolutions.com/research/policy-change-can-reduce-benefit-cliffs-incentivize-work/.] 

Most of Ohio’s benefit programs do not have asset tests, which allows workers to build a financial cushion while receiving social safety net benefits. The program is modeled on the success of the Allen County, Ohio, program that paired TANF Prevention, Retention, and Contingency (PRC) supports with job coaching assistance and financial incentives benchmarked to employment goals for pilot programs in Allen, Fairfield, Hamilton, Licking, Meigs, and Stark.[endnoteRef:43]  [43:  “AOF Sets Budget and Policy Priorities for 2021,” Advocates for Ohio’s Future, January 14, 2021, https://www.advocatesforohio.org/news/aof-sets-budget-and-policy-priorities-for-2021.] 

**RECOMMENDATION:** Congress should eliminate or index earned income, asset, and resource limits for Medicaid and SSI to inflation rates to ensure that people with disabilities benefit from earnings increases without losing important benefits. Simultaneously, Congress should repeal Section 14(c) of the FLSA permitting commensurate (subminimum) wages. 

## Disability, Intersecting Identities, and the Wealth Gap

Disability is present in every community, and people with disabilities represent identities within every racial, ethnic, and cultural group. Prioritizing disability and intersecting identities within diversity, equity, and inclusion (DEI) work is a critical component of advancing economic equity and financial independence for people with disabilities. People of color with disabilities, women with disabilities, and LGBTQ people with disabilities experience the combined and exacerbated impact of structural ableism, racism, and sexism. For instance, there is a higher prevalence of disability among women compared with men, and higher rates of poverty among working-age women with disabilities than both women with disabilities and men with disabilities.[endnoteRef:44] Women with disabilities also complete less education than men with disabilities, and both groups attain less education than people without disabilities. Lower rates of educational attainment also directly correlate with lower employment rates, with only 26 percent of women with disabilities without a bachelor’s degree being employed compared with 32 percent of men with disabilities without a bachelor’s degree.[endnoteRef:45]  [44:  U.S. Census Bureau, “American Community Survey, Table S1810 Disability Characteristics, ACS 2021 – 5-year estimates,” accessed September 20, 2022, https://data.census.gov/table?q=United+States&t=-:Disability&tid=ACSST5Y2021.S1810&mode=results. ]  [45:  “Spotlight on Women with Disabilities,” U.S. Department of Labor, Office of Disability Employment Policy, March 2021, accessed September 20, 2022, https://www.dol.gov/sites/dolgov/files/ODEP/pdf/Spotlight-on-Women-with-Disabilities-March-2021.pdf.] 

Lower educational attainment correlates with lower earnings and lower net wealth, pointing to the economic disparities across the lifespan for people with disabilities. People with disabilities in communities of color face heightened disparities in access to homeownership, net wealth, and income and employment. All households with working-age householders with disabilities, for instance, have lower net worth on average than those without disabilities; however, racial differences among householders with disabilities lead to sharper and starker disparities in net wealth. In 2019, Black households with a disability had the lowest average net worth at $1,282, followed by Latinx households with a disability at $13,340, compared with White households with a disability at $27,100—and to White households without a disability at $132,400.[endnoteRef:46]  [46:  National Disability Institute (NDI), “NDI Analysis of U.S. Census Bureau’s Survey of Income and Program Microdata, 2014 Panel, Wave 4,” U.S. Department of Labor Office of Disability Employment Policy, 2019, https://www.dol.gov/sites/dolgov/files/ODEP/pdf/Spotlight-on-Women-with-Disabilities-March-2021.pdf.] 

Racial disparities in access to affordable housing are well documented and no doubt impact homeownership for people of color with disabilities as well—while 48 percent of people without disabilities own their homes, only 14 percent of people with disabilities do.[endnoteRef:47] Low-income people with disabilities are more likely to rely on access to means-tested public assistance programs that use asset limits to determine continuing eligibility. As such, people with disabilities who belong to other marginalized communities are more likely to experience cycles of poverty and economic dependence, as asset limits disincentivize further education; limit opportunities to increase income and employment; and inhibit asset building. [47:  “2020 American Housing Survey (AHS) Table Creator,” U.S. Census Bureau, accessed August 20, 2022, https://www.census.gov/programs-surveys/ahs/data/interactive/ahstablecreator.html?s_areas=00000&s_year=2019&s_tablename=TABLE8B&s_bygroup1=10&s_bygroup2=9&s_filtergroup1=2&s_filtergroup2=1.] 

Access to fair income and employment is a major factor in wealth building and economic independence for people with disabilities. In response to well documented employment disparities for people with disabilities, an increasing number of large employers explicitly include disability in institutional DEI initiatives promoting recruitment, hiring, and retention of people with disabilities alongside outreach to other marginalized groups, and many now host disability-focused (including neurodiversity-focused) employee resource groups (ERGs) or affinity groups. Within the public sector, the federal government has used the Schedule A special hiring authority to onboard otherwise qualified employees with disabilities through a noncompetitive excepted service appointments process, allowing agencies to bypass the traditional hiring process and in some cases, the need to create and publish a job announcement. 

According to GAO, the federal government “generally increased hiring of persons with disabilities” under Schedule A from 2011 to 2017, with a consistently higher proportion of employees with disabilities hired into full-time positions (which provide more economic security and a better pathway to financial independence) as opposed to temporary or part-time positions.[endnoteRef:48] In that time period, the percentage of all new federal government hires with disabilities increased from 11.3 percent to 19.6 percent.[endnoteRef:49] Such initiatives situate disability as both a DEI issue and a charitable issue by creating incentives for agencies to increase targeted hiring of workers with disabilities as a historically and currently underrepresented class while simultaneously situating people with disabilities as unlikely to be or incapable of being hired through the conventional competitive appointments process. [48:  U.S. Government Accountability Office, “GAO-20-384, Disability Employment: Hiring Has Increased but Actions Needed to Assess Retention, Training, and Reasonable Accommodation Efforts,” June 2020, https://www.gao.gov/assets/gao-20-384.pdf.]  [49:  U.S. Government Accountability Office, “GAO-20-384, Disability Employment: Hiring Has Increased but Actions Needed to Assess Retention, Training, and Reasonable Accommodation Efforts,” June 2020, https://www.gao.gov/assets/gao-20-384.pdf.] 

A focus on intersectionality in addressing economic disparities—including access to employment and employment outcomes—and financial decision making would enable federal and state partners, as well as employers and financial institutions, to better understand and respond to the complex, multifaceted needs of people with disabilities. Thus, initiatives addressing access to homeownership, wealth building, and employment as pathways to economic security, as well as the impact of asset limits in inhibiting financial independence in these areas, require intersectional analysis and approach into the systemic factors underlying disability-imposed, racial, and gendered economic disparities.

# Chapter 2: Supplemental Security Income

The Supplemental Security Income (SSI) program is a vital social safety net for low-income people with severe disabilities. SSI is administered by the federal government and provides modest financial assistance to people who are unable to work with enough income to meet their basic needs. According to 2020 Survey of Income and Program Participation (SIPP) data, 10 percent (approximately 7 million) Medicaid/Children’s Health Insurance Program (CHIP) recipients also received SSI benefits. Of these individuals, 11.2 percent (780,000) are 0 to 17 years old, and 65.5 percent (4.6 million) are working age or 18 to 64 years old[endnoteRef:50] (see Appendix A). For 2023, the maximum monthly SSI Federal Benefit Rate (FBR) for people with disabilities is $914 for individuals and $1,371 for couples. SSI program income limits have been in effect since the 1970s when the program was first created. Then, President and Congress set asset limits to allow recipients some savings to cover the cost of emergencies. The current $2,000 asset limit (individuals) and $3,000 asset limit (couple) have remained in effect since 1989.[endnoteRef:51]  [50:  Michael D. King, “U.S. Census Bureau: Interactive Tables – Medicaid and SSI 2020 SIPP Data,” May 24, 2022, https://www.census.gov/library/stories/2022/05/who-is-receiving-social-safety-net-benefits.html.]  [51:  Kathleen Romig and Sam Washington, “Policymakers Should Expand and Simplify Supplemental Security Income,” Center on Budget and Policy Priorities, May 4, 2022, https://www.cbpp.org/research/social-security/policymakers-should-expand-and-simplify-supplemental-security-income#_ftn13. ] 

The premise of imposing asset limits is to ensure the neediest people receive public benefits support. However, research has consistently shown that liberalizing asset limits promotes financial and economic independence for people with disabilities. Unfortunately, myriad difficulties with the application process, application wait times, income, asset rules, reporting and administrative burdens, and understanding work rules and overpayments jeopardize the financial security of SSI beneficiaries with disabilities and relegate many to limited employment and persistent poverty. SSI is particularly beneficial to low-income Black and Latinx seniors and people with disabilities,[endnoteRef:52] who often have very little residual income for savings.  [52:  Kathleen Romig and Sam Washington, “Policymakers Should Expand and Simplify Supplemental Security Income,” Center on Budget and Policy Priorities, May 4, 2022, https://www.cbpp.org/research/social-security/policymakers-should-expand-and-simplify-supplemental-security-income.] 

Concerns about social welfare programs being abused or fiscally overwhelmed if asset and resource limits are modified or eliminated are unfounded. Studies show that eliminating or increasing resource limits would have negligible effects on program participation and the cost to administer SSI programs.[endnoteRef:53] Importantly, increasing resource limits to $10,000 for individuals and $20,000 for couples would result in only a 1 percent increase in program costs ($8 billion over 10 years), and about a 3 percent (234,000) increase in program participation.[endnoteRef:54] Raising resource limits for individuals to $100,000—50 times more than the current limit—would result in SSI program participation increases of a mere 5 percent (380,000). Excluding retirement accounts, from current asset tests in tandem with raising asset limits to $100,000, would only see about another 23,000 more people participate in SSI programs. The difference in program participation increase resulting from increasing resource limits to $100,000 versus eliminating limits altogether is a mere 1 percent (59,000).[endnoteRef:55] [53:  Kathleen Romig, Luis Nunez, and Arloc Sherman, “The Case for Updating SSI Asset Limits,” Center on Budget and Policy Priorities, June 26, 2023, https://www.cbpp.org/research/social-security/the-case-for-updating-ssi-asset-limits.]  [54:  Kathleen Romig, Luis Nunez, and Arloc Sherman, “The Case for Updating SSI Asset Limits,” Center on Budget and Policy Priorities, June 26, 2023, https://www.cbpp.org/research/social-security/the-case-for-updating-ssi-asset-limits.]  [55:  Kathleen Romig, Luis Nunez, and Arloc Sherman, “The Case for Updating SSI Asset Limits,” Center on Budget and Policy Priorities, June 26, 2023, https://www.cbpp.org/research/social-security/the-case-for-updating-ssi-asset-limits.] 

Research also shows that, over a 15-year period beginning in 2001, 22.2 percent of SSI beneficiaries participating in an SSDI Trial Work Period (TWP) had earnings and 11.9 percent had sufficient earnings to suspend cash benefits; of those who suspended cash benefits, only a quarter later returned to SSA disability programs.[endnoteRef:56] Notwithstanding, beneficiaries continue to limit their employment activities to avoid the unintended consequences of earning too much, including benefits cliffs and overpayments that lead to benefits suspensions. [56:  Jack Smalligan and Chantel Boyens, “Raising the Alarm on the Unintended Consequences of Social Security’s Return to Work Policies,” March 2023, https://s3-us-gov-west-1.amazonaws.com/cg-778536a2-e58c-44f1-9173-29749804ec54/uploads/2023/03/Raising-the-Alarm-on-the-Unintended-Consequences-of-Social-Securitys-Return-to-Work-Policies-508.pdf.] 

## Streamlining Applications Processes and Reducing Administrative Burdens for SSI and Other Benefits Programs

Applying for benefits for SSI and other public program supports can be challenging for people with disabilities, especially for those with limited income or resources, those who are formerly incarcerated, those with mental health conditions, or those with limited English proficiency. Specifically, benefits application processes are often complex to navigate and duplicative for those who require multiple streams of support. The multiple and complicated application processes pose challenges to beneficiaries who wish to work and make SSI expensive to administer. Thirty-five percent of the budget of the Social Security Administration (SSA) is required to administer the SSI program.[endnoteRef:57] [57:  Kathleen Romig and Sam Washington, “Policymakers Should Expand and Simplify Supplemental Security Income,” Center on Budget and Policy Priorities, May 4, 2022, https://www.cbpp.org/research/social-security/policymakers-should-expand-and-simplify-supplemental-security-income. ] 

Strategies to reduce the administrative burden involved in applying for SSI and other benefits and simplifying the application process for beneficiaries include: (1) increasing outreach and awareness to people with disabilities who are potentially eligible for SSI benefits, (2) providing more assistance to people with disabilities to complete applications and renewals, (3) simplifying verification requirements, and (4) increasing partnerships with state, local, and nonprofit entities that are assisting people with disabilities through the benefits processes.

In some states, individuals who qualify for SSI automatically qualify for Medicaid benefits without needing to complete a separate application. In some states, automatic eligibility still requires people to sign up for Medicaid, while in others qualifying for Medicaid does not guarantee Medicaid eligibility. For those who want to work, some states provide work incentives counseling services via Work Incentives Specialist Advocates (WISAs), Community Partner Work Incentives Counselors (CPWICs), or Community Work Incentives Coordinators (CWICs) to support people with disabilities receiving SSI benefits. Unfortunately, working with these services does not necessarily result in a streamlined benefits application administrative process, as CWICs and CPWICs provide post-eligibility services and are prohibited from providing initial application services.

Beyond the application process, SSI’s income and resource rules are often difficult for beneficiaries to understand and can lead to terminations, reductions in benefits, and overpayment charges. The overpayment process is challenging to navigate, and many beneficiaries are unaware of the waiver and appeals processes available. SSI overpayments often cause undue hardship for beneficiaries. Beneficiaries incur overpayments due to increases in earned or unearned income that aren’t reported to the SSA, changes in living situation or marital status, having resources over the allowable limit, or administrative errors in benefits calculations due to incorrect or incomplete information. As such, overpayments are a disincentive to work for many beneficiaries. Overpayment and benefit suspension rates differ by program, age, education, race, and ethnicity.[endnoteRef:58] However, people of color and women experience overpayments at higher rates;[endnoteRef:59] this may have implications for how agencies address overpayments. [58:  Marisa Shenk and Gina Livermore, “Disability Policy Brief. Work-Related Overpayments Among Disability Beneficiaries,” November 2021, https://www.mathematica.org/publications/work-related-overpayments-among-disability-beneficiaries.]  [59:  Denise Hoffman et al., “Work-Related Overpayments to Social Security Disability Insurance Beneficiaries: Prevalence and Descriptive Statistics,” Social Security Administration, November 2, 2019, https://www.ssa.gov/policy/docs/ssb/v79n2/v79n2p65.html.] 

SSA tracks monthly wages retrospectively which means there is a time lag in earnings data used to estimate benefits. SSA makes benefits redeterminations via beneficiary self-reporting, Internal Revenue Services (IRS) annual wage data, unemployment insurance data, access to state databases, SSA-approved wage verification companies, and private payroll data. This time-lagged process can lead to overpayments. Though SSI beneficiaries are least likely to be working,[endnoteRef:60] in 2020, the SSI overpayment rate was 8.13 percent or just under $4.6 billion (compared with 0.85% or $1.2 billion for SSDI).[endnoteRef:61] The mean overpayment in FY 2021 was $1,717 and the median overpayment was $604, which includes overpayments due to beneficiaries exceeding the asset limit, among other reasons.[endnoteRef:62] Nonetheless, program experts who counsel beneficiaries report that overpayments have contributed to developing broader understandings of the risks and benefits of working.[endnoteRef:63] [60:  “National Beneficiary Survey: Disability Statistics 2015,” U.S. Social Security Administration, 2018, https://www.ssa.gov/pubs/EN-64-030.pdf.]  [61:  Jack Smalligan and Chantel Boyens,“Raising the Alarm on the Unintended Consequences of Social Security’s Return to Work Policies,” March 2023, https://s3-us-gov-west-1.amazonaws.com/cg-778536a2-e58c-44f1-9173-29749804ec54/uploads/2023/03/Raising-the-Alarm-on-the-Unintended-Consequences-of-Social-Securitys-Return-to-Work-Policies-508.pdf.Notes: All SSDI estimates were provided by SSA staff on July 25, 2022. FY 2020 SSI overpayments. SSI overpayments also available on paymentaccuracy.gov.]  [62:  Jack Smalligan and Chantel Boyens,“Raising the Alarm on the Unintended Consequences of Social Security’s Return to Work Policies,” March 2023, https://s3-us-gov-west-1.amazonaws.com/cg-778536a2-e58c-44f1-9173-29749804ec54/uploads/2023/03/Raising-the-Alarm-on-the-Unintended-Consequences-of-Social-Securitys-Return-to-Work-Policies-508.pdf.Notes: All SSDI estimates were provided by SSA staff on July 25, 2022. FY 2020 SSI overpayments. SSI overpayments also available on paymentaccuracy.gov.]  [63:  Jack Smalligan and Chantel Boyens,“Raising the Alarm on the Unintended Consequences of Social Security’s Return to Work Policies,” March 2023, https://s3-us-gov-west-1.amazonaws.com/cg-778536a2-e58c-44f1-9173-29749804ec54/uploads/2023/03/Raising-the-Alarm-on-the-Unintended-Consequences-of-Social-Securitys-Return-to-Work-Policies-508.pdf.Notes: All SSDI estimates were provided by SSA staff on July 25, 2022. FY 2020 SSI overpayments. SSI overpayments also available on paymentaccuracy.gov.] 

While overpayments can be avoided by reporting wages and changes in status in a timely manner, many benefits recipients fail to do so for various reasons. Overpayments often occur when people receive payments while engaging in work that places them above the benefits break-even point or at a level where benefits should have been reduced or suspended. For SSI beneficiaries, overpayments occur at a rate of 14 percent, and often occur among the recently employed (3.6%), and 13 percent limited their employment in response to a suspension of benefits.[endnoteRef:64]  [64:  Marisa Shenk and Gina Livermore, “Disability Policy Brief. Work-Related Overpayments Among Disability Beneficiaries,” November 2021, https://www.mathematica.org/publications/work-related-overpayments-among-disability-beneficiaries. ] 

Amending or eliminating program asset and income rules would alleviate many of the factors that preclude economic independence for people with disabilities, including eliminating overpayment debt. The Social Security Actuaries estimate that the general income and earned income exclusions would have been $128 and $416 in 2022, respectively, if indexed to inflation.[endnoteRef:65] SSI asset limits would be $9,929 for an individual and $14,893 for a couple in 2023, had limits been indexed to inflation since the law first passed in 1972.[endnoteRef:66] The Urban Institute also found that increasing general and earned income exclusions to inflation indexed amounts would lift 400,000 people out of poverty.[endnoteRef:67] Whereas beneficiaries may have earnings exempted based on special rules, (e.g., via eligibility for Plan to Achieve Self Support [PASS] or disregards for impairment-related work expenses), special rules and programs require SSA redeterminations. Very low-income thresholds for SSI benefits also means SSA must conduct a large number of redeterminations, which are a labor cost burden for the agency.  [65:  Jack Smalligan and Chantel Boyens,“Raising the Alarm on the Unintended Consequences of Social Security’s Return to Work Policies,” March 2023, https://www.ssab.gov/research/raising-the-alarm-on-the-unintended-consequences-of-social-securitys-return-to-work-policies/. Notes: All SSDI estimates were provided by SSA staff on July 25, 2022. FY 2020 SSI overpayments. SSI overpayments also available on paymentaccuracy.gov.]  [66:  Kathleen Romig, Luis Nunez, and Arloc Sherman, “The Case for Updating SSI Asset Limits,” Center on Budget and Policy Priorities, June 26, 2023, https://www.cbpp.org/research/social-security/the-case-for-updating-ssi-asset-limits#_ftn5.]  [67:  Jack Smalligan and Chantel Boyens,“Raising the Alarm on the Unintended Consequences of Social Security’s Return to Work Policies,” March 2023, https://s3-us-gov-west-1.amazonaws.com/cg-778536a2-e58c-44f1-9173-29749804ec54/uploads/2023/03/Raising-the-Alarm-on-the-Unintended-Consequences-of-Social-Securitys-Return-to-Work-Policies-508.pdf.Notes: All SSDI estimates were provided by SSA staff on July 25, 2022. FY 2020 SSI overpayments. SSI overpayments also available on paymentaccuracy.gov.] 

The SSI Savings Penalty Elimination Act (S.4102) proposes an adjustment to the program’s asset limits after nearly four decades since the SSI program’s inception and would allow recipients to earn and save more. This legislation would allow people with disabilities to improve their financial lives by increasing asset limits from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for couples.[endnoteRef:68] Despite the promises of S. 4102, challenges remain regarding how resource limits are assessed for SSI. The current $2,000 and $3,000 thresholds apply to gross assets, not net wealth. This means that individuals who have an excess of debt to assets still cannot qualify for SSI.  [68:  U.S. Congress, “Text – S.4102 – 117th Congress (2021–2022): SSI Savings Penalty Elimination Act,” Library of Congress, April 2022, https://www.congress.gov/bill/117th-congress/senate-bill/4102/text. ] 

**RECOMMENDATION:** Congress should eliminate or modify SSI income and resource rules, including allowing debts to counterbalance countable resources in determining program eligibility, reduce the reporting burden for applicants and beneficiaries, and update overpayment waiver rules so they are less punitive and easier to navigate. Congress should implement No Wrong Door programs nationwide to facilitate the integration of social safety net program application and navigation processes.

# Chapter 3: Health Care

Equitable access to health care, including access to health insurance, improves families’ financial health.[endnoteRef:73] Medicaid is a health insurance program offered jointly by the federal government and states. In many states, people with disabilities who are Supplemental Security Income (SSI) recipients automatically qualify for Medicaid. More than 10 million people qualify for Medicaid based on disability.[endnoteRef:74] SSI income thresholds for people with disabilities who are also working vary by state, ranging from $35,105 in Georgia to $85,727 in Alaska in 2023.[endnoteRef:75] Once individual earnings exceed these thresholds, except in a few specific cases, the participant may become ineligible to receive Medicaid or public health insurance benefits. In tandem, asset and resource limits impose a marriage penalty, where (1) spouse’s income and assets count against eligibility thresholds;[endnoteRef:76] and regardless of medical costs, medical debt, and the extra cost of living with disability; and (2) the SSI asset limit is $3,000 for married couples or two-parent families with children, as opposed to $4,000 for two individuals.[endnoteRef:77]  [73:  Priya Bathija and Duane Reynolds, “Making a Financial Case for Health Equity,” American Hospital Association, November 12, 2019, https://www.aha.org/news/blog/2019-11-12-making-financial-case-health-equity. ]  [74:  Medicaid and CHIP Payment and Access Commission, “People with Disabilities,” 2022, https://www.macpac.gov/subtopic/people-with-disabilities/. ]  [75:  U.S. Social Security Administration, “Program Operations Manual System. SI 02302.200 Chartered Threshold Amounts,” December 14, 2021, https://secure.ssa.gov/poms.nsf/lnx/0502302200. Notes: The 2023 threshold amounts were calculated using 2019 average per capita Medicaid expenses by state, as 2020 data was unavailable.]  [76:  “What Is the Medicaid Marriage Penalty?” American Council on Aging, February 17, 2023, https://www.medicaidplanningassistance.org/question/what-is-the-medicaid-marriage-penalty/#:~:text=What%20is%20the%20Medicaid%20marriage%20penalty%3F,-2%20Answers&text=The%20Medicaid%20marriage%20penalty%20is,a%20result%20of%20getting%20married.]  [77:  Kathleen Romig and Sam Washington, “Policymakers Should Expand and Simplify Supplemental Security Income,” Center on Budget and Policy Priorities, May 4, 2022, https://www.cbpp.org/research/social-security/policymakers-should-expand-and-simplify-supplemental-security-income. ] 

Affordable Care Act (ACA) 2014 reforms stipulated provisions for guaranteed issue insurance options and the expansion of Medicaid across states. As an alternative for people who do not qualify for Medicaid, Section 1331 of the Affordable Care Act  gives states the option to create a Basic Health Program (BHP) for low-income residents who are under 65 years of age and eligible to purchase health insurance coverage via the Health Insurance Marketplace.[endnoteRef:78] Similar to other safety net asset requirements, individuals qualify for BHP if their income is between 133 and 200 percent of the Federal Poverty Level (FPL).  [78:  Centers for Medicaid & Medicare Services, “Basic Health Program,” accessed September 20, 2022, https://www.medicaid.gov/basic-health-program/index.html#:~:text=Through%20the%20Basic%20Health%20Program%2C%20states%20can%20provide,200%20percent%20of%20the%20federal%20poverty%20level%20%28FPL%29.] 

Asset limitations jeopardize the ability of people with disabilities to establish and maintain economic independence due to medical and health insurance costs, medical debt, and low levels of income and employment. Average expenditures for health care for people with disabilities are five to six times higher, and people with disabilities often have higher out-of-pocket costs.[endnoteRef:79] Described as Health Insurance-Motivated Disability Enrollment (HIMDE), many working-age adults with disabilities apply to Social Security programs, including SSI and Social Security Disability Insurance (SSDI), to become eligible for Medicaid and Medicare.[endnoteRef:80]  [79:  Jane Kennedy, Elizabeth Geneva Wood, and Lex Frieden, “Disparities in Insurance Coverage, Health Services Use, and Access Following Implementation of the Affordable Care Act: A Comparison of Disabled and Nondisabled Working-Age Adults,” Journal of Health Care Organization, Provision, and Financing 54 (2017): 1–10, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5798675/. ]  [80:  Jane Kennedy, Elizabeth Geneva Wood, and Lex Frieden, “Disparities in Insurance Coverage, Health Services Use, and Access Following Implementation of the Affordable Care Act: A Comparison of Disabled and Nondisabled Working-Age Adults,” Journal of Health Care Organization, Provision, and Financing 54 (2017): 1–10, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5798675/.] 

## Affordable Care Act Reform

The ACA has had a positive impact on people with disabilities through increasing access to insurance coverage, including expanding coverage through the Health Insurance Marketplace, BHPs, and Medicaid; improving long-term services and supports, including home and community-based services (HCBS); enhancing protections by eliminating insurance discrimination due to preexisting conditions; improving access and quality of health care, including coverage of essential health benefits; improving access to examination equipment and data collection; and ending limits on health benefits.[endnoteRef:81]  [81:  Ohio Disability and Health Program, “The Affordable Care Act: Impact on People with Disabilities,” September 2013, https://nisonger.osu.edu/wp-content/uploads/2016/11/The-Affordable-Care-Act-Impact-on-PWD_Brief-Final.pdf. ] 

Medicaid often provides coverage for services that are not covered under private insurance or Medicare, such as a personal care attendant and other community-based, long-term care services. Nonetheless, there are limits on how much someone with a disability can earn and still have access to Medicaid. In 2022, Medicaid Buy-In (MBI) monthly income limits ranged from as low as $841 in Arkansas to no limit in Massachusetts.[endnoteRef:82] Medicaid programs also have asset limits. As such, despite ACA reforms, an insured coverage gap of 1.9 million people remains in the 10 states that have not adopted Medicaid expansion.[endnoteRef:83] In addition, the Medicaid continuous enrollment provision, instituted during the pandemic years, ended in March 2023. Continuous enrollment allowed individuals to maintain insurance coverage, regardless of income. In those nonexpansion states with low and limited eligibility thresholds, many people will become ineligible for Medicaid with no access to affordable health care coverage options during the one-year unwinding period that began in April 2023. Between 5.3 million and 14.2 million people are expected to lose Medicaid coverage during the 12-month unwinding period.[endnoteRef:84] [82:  Jennifer Tolbert and Meghana Ammula, “10 Things to Know About the Unwinding of the Medicaid Continuous Enrollment Provision,” Kaiser Family Foundation, April 5, 2023, https://www.kff.org/medicaid/issue-brief/10-things-to-know-about-the-unwinding-of-the-medicaid-continuous-enrollment-provision/.]  [83:  Robin Rudowitz et al., “How Many Uninsured Are in the Coverage Gap and How Many Could Be Eligible if All States Adopted the Medicaid Expansion?” Kaiser Family Foundation, March 31, 2023, https://www.kff.org/medicaid/issue-brief/how-many-uninsured-are-in-the-coverage-gap-and-how-many-could-be-eligible-if-all-states-adopted-the-medicaid-expansion/. ]  [84:  Jennifer Tolbert and Meghana Ammula, “10 Things to Know About the Unwinding of the Medicaid Continuous Enrollment Provision,” Kaiser Family Foundation, April 5, 2023, https://www.kff.org/medicaid/issue-brief/10-things-to-know-about-the-unwinding-of-the-medicaid-continuous-enrollment-provision/.] 

## Asset and Resource Limit Reform for Medicaid and Medicaid Buy-In

Eliminating Medicaid asset limits along with age limits and spousal inclusion would simplify the benefits process and facilitate economic independence for people with disabilities. One alternative to fully eradicating asset and resource limits involves scaling both medical premium contributions to health insurance plans and allowing scalable asset and resource limits based on income and earnings brackets. The Ticket to Work and Work Incentives Improvement Act of 1999 (TTWIIA) authorized states to cover “buy-in” groups with their own rules about income, assets, and premiums. Some states allow workers with disabilities to pay sliding scale premiums for Medicaid coverage as their incomes rise.[endnoteRef:85],[endnoteRef:86] [85:  U.S. Social Security Administration, “Understanding SSI – SSI Work Incentives – 2023,” 2023, https://www.ssa.gov/ssi/text-work-ussi.htm. ]  [86:  U.S. Government Accountability Office, “Medicaid and Ticket to Work: States’ Early Efforts to Cover Working Individuals with Disabilities,” June 2013, https://www.govinfo.gov/content/pkg/GAOREPORTS-GAO-03-587/html/GAOREPORTS-GAO-03-587.htm. ] 

Health insurance coverage has a vital relationship to employment for people with disabilities. People with disabilities are often concerned about losing Medicaid coverage if they return to the workforce. The MBI program allows people with disabilities to purchase Medicaid insurance coverage while remaining employed. MBI is regarded as beneficial for people with disabilities who wish to remain in the workforce and is associated with increased earnings and employment for people with disabilities.[endnoteRef:87]  [87:  Lisa Harootunian et al., “Improving the Medicaid Buy-In for Workers with Disabilities,” Bipartisan Policy Center, December 19, 2022, https://bipartisanpolicy.org/report/improving-medicaid-buy/. ] 

The Affordable Care Act proposed an expansion of Medicaid eligibility to include workers with disabilities with incomes up to 138 percent of the FPL ($18,700 for an individual). However, in states that have not expanded their program, people with disabilities may experience a coverage gap where they earn too much to qualify, but not enough to take advantage of subsidized coverage through the Health Insurance Marketplace. Despite the incentives provided through the 2021 American Rescue Plan Act (ARPA), 10 states have not yet expanded Medicaid—Alabama, Florida, Georgia, Mississippi, North Carolina, South Carolina, Tennessee, Texas, Wisconsin, and Wyoming.[endnoteRef:88] Medicaid Buy-In is beneficial for both employees with disabilities and employers, as the program eliminates the need to suppress income. Most states have MBI programs under which workers with significant disabilities pay sliding scale premiums to maintain their Medicaid coverage. The upper income limits for these programs vary by state and, along with sliding scale premiums, make MBI programs a less attractive option than Section 1619(b) status. [88:  Akeiisa Coleman and Sara Federman, “Where Do the States Stand on Medicaid Expansion?" The Commonwealth Fund, October 2022, https://www.commonwealthfund.org/blog/2022/where-do-states-stand-medicaid-expansion. ] 

Medicaid Buy-In programs for workers with disabilities have been adopted in 48 states.[endnoteRef:89] Those states allow individuals to buy into Medicaid via premium contribution levels set by each jurisdiction. However, these contributions levels do not factor in the varied financial experiences of individuals, particularly considering the asset and income limitations associated with most state programs. States employ different mechanisms for assessing premium contributions, including asset and income requirements.[endnoteRef:90] [89:  “Medicaid Eligibility Through Buy-In Programs for Working People with Disabilities,” Kaiser Family Foundation, accessed September 20, 2022, https://www.kff.org/other/state-indicator/medicaid-eligibility-through-buy-in-programs-for-working-people-with-disabilities/?currentTimeframe=0&selectedRows=%7B%22states%22:%7B%22all%22:%7B%7D%7D,%22wrapups%22:%7B%22united-states%22:%7B%7D%7D%7D&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22desc%22%7D.]  [90:  “Medicaid Eligibility Through Buy-In Programs for Working People with Disabilities,” Kaiser Family Foundation, accessed September 20, 2022, https://www.kff.org/other/state-indicator/medicaid-eligibility-through-buy-in-programs-for-working-people-with-disabilities/?currentTimeframe=0&selectedRows=%7B%22states%22:%7B%22all%22:%7B%7D%7D,%22wrapups%22:%7B%22united-states%22:%7B%7D%7D%7D&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22desc%22%7D.] 

Oregon has no monthly premiums for individuals receiving in-home Section 1915 (c) waiver or Program of All-Inclusive Care for the Elderly (PACE) services. Otherwise, premiums begin at 75 percent FPL, with individual income limits of 250 percent FPL.

In Virginia, applicants must have income at or below 138 percent FPL and assets limited to $2,000; however, once enrolled, individuals can have income up to $75,000/year and assets up to the Section 1619(b) threshold ($46,340 in 2022).

In Michigan, applicants must have income at or below 250 percent FPL and assets at Medicare Savings Program (MSP) limits. Once enrolled, there is no income limit and no limit on certain retirement assets.

Mississippi applicants must have earned income below 250 percent FPL, unearned income limits of 135 percent FPL, and assets limits of $24,000 for an individual and $26,000 for a couple. Individuals earning less than 150 percent FPL do not pay a premium. Of note, Mississippi’s State Plan Amendment (SPA) 23-0011 eliminates all co-payments for pharmacy and health care services as of May 1, 2023.[endnoteRef:91] [91:  “Working Disabled,” Mississippi Division of Medicaid, 2019, https://medicaid.ms.gov/medicaid-coverage/who-qualifies-for-coverage/working-disabled/.] 

Massachusetts has no income and asset limits, and premiums begin when income exceeds 150 percent FPL.

NCD Listening Session stakeholders recommend instituting scalable premium contributions as an alternative to set levels that preclude accumulating wealth and assets for many beneficiaries.

Look at it like a premium. It should be scaled based on income, because if we keep a static formula, it just keeps people down and prevents people from moving up. As we said, they deny promotions or extra hours or things. So, I think it needs to be scalable.

—NCD Listening Session Participant

Several challenges persist with Medicaid Buy-In programs including inadequate federal guidance on designing MBI for Workers with Disabilities programs. Inadequate guidance has been shown to limit state program take-up and workforce participation. As is the case with many safety net programs, there is a lack of clear, consistent, and accessible consumer information and resources for MBI programs. This lack of information contributes to Medicaid beneficiaries’ declining employment opportunities and promotions.[endnoteRef:92] In addition, limited program data (enrollment and service utilization rates) impedes opportunities for states to identify and adopt promising practices. [92:  Lisa Harootunian et al., “Improving the Medicaid Buy-In for Workers with Disabilities,” Bipartisan Policy Center, December 19, 2022, https://bipartisanpolicy.org/report/improving-medicaid-buy/.] 

## Further Research into Non-SSI Pathways for Medicaid

Medicaid expansion, provided through ACA reforms, allowed many people who would otherwise have no resources access to medical insurance, including Medicaid. Despite these reforms, many states have eligibility requirements that are tied to SSI determinations. More than 6 in 10 nonsenior adults receiving Medicaid do not receive SSI benefits, and Medicaid provides important supports for those with serious health conditions and who need work support.[endnoteRef:93] In addition, expansion states have higher shares of individuals who qualify for Medicaid and not SSI, than do nonexpansion states (68% versus 53%).[endnoteRef:94] Providing optional and additional disability-related pathways to Medicaid access is important for ensuring nonsenior people with disabilities who do not receive SSI can qualify for Medicaid coverage.  [93:  MaryBeth Musumeci and Kendal Orgera, “People with Disabilities Are at Risk of Losing Medicaid Coverage Without the ACA Expansion,” Kaiser Family Foundation, November 2, 2020, https://www.kff.org/medicaid/issue-brief/people-with-disabilities-are-at-risk-of-losing-medicaid-coverage-without-the-aca-expansion/. ]  [94:  MaryBeth Musumeci and Kendal Orgera, “People with Disabilities Are at Risk of Losing Medicaid Coverage Without the ACA Expansion,” Kaiser Family Foundation, November 2, 2020, https://www.kff.org/medicaid/issue-brief/people-with-disabilities-are-at-risk-of-losing-medicaid-coverage-without-the-aca-expansion/. ] 

**RECOMMENDATIONS:**

Congress should amend ACA Section 1557, including the removal of asset and resource limits for Medicaid and Medicaid Buy-In programs. Remove Medicaid asset limits, age limits, and marriage penalties to simplify the benefits process and facilitate economic independence for people with disabilities. Additional asset limit reforms to Medicaid programs should include allowing scalable premium contributions based on income, and funding further research into non-SSI pathways for Medicaid eligibility.

Congress should direct Centers for Medicare and Medicaid Services (CMS) to issue guidance on the range of options available for states to offer coverage to MBI for workers with disabilities. CMS should revise the SPA Template to clarify state options for adopting program flexibilities under current law.

Congress should authorize funding for CMS and states to improve outreach, assessment, and interagency coordination. This should include funding for CMS to establish a national technical assistance center to provide ongoing support to states and collaborate with the Social Security Administration (SSA) and other agencies to conduct outreach to beneficiaries and provide benefits counseling. In addition, Congress should direct CMS to conduct data analysis and research to understand and improve health care and health insurance programs.

## Medicaid in COVID-19 Times

The Limit, Save, Grow Act of 2023 (H.R. 2811) increases the federal debt and decreases spending limits for various social welfare programs. Decreasing federal spending limits has repercussions for individuals affected by recent and future public health emergencies (PHE). Both CMS and states instituted numerous waivers and flexibilities during the pandemic that eased burdens for Medicaid beneficiaries. This included state Medicaid waivers that relaxed eligibility requirements for HCBS enrollment and service delivery. Compounding this issue is the addition of four million working-age Americans who are unable to return to work due to long-COVID.[endnoteRef:95] People with disabilities who live at the intersection of race/ethnicity and gender are especially vulnerable to financial shocks due to PHE and experienced higher financial fallout from the pandemic.[endnoteRef:96] [95:  Katie Bach, “New Data Shows Long COVID Is Keeping as Many as 4 Million People Out of Work,” Brookings Institution, August 24, 2022, https://www.brookings.edu/research/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/.]  [96:  Connor Maxwell and Danyelle Solomon, “The Economic Fallout of the Coronavirus for People of Color,” Center for American Progress, April 14, 2020, https://www.americanprogress.org/article/economic-fallout-coronavirus-people-color/.] 

Unfortunately, any future cuts to Medicaid threaten to eliminate several advances in health care coverage and access implemented during the pandemic era. COVID-era actions simplified the eligibility requirements, application and appeals processes, and other methods that made it easier for people with disabilities to access Medicaid systems. Removing these provisions will inevitably result in lags and errors in the redetermination process that could see many loose benefits, due to technological errors and administrative burdens that require reverification of income and assets.

**RECOMMENDATION:** Congress should enact legislation for permanent continuous enrollment for Medicaid for individuals medically determined to have a lifelong disability and for automatic enrollment of SSI beneficiaries in Medicaid. CMS should support states to provide continuous Medicaid enrollment and to work to permanently implement policies and processes that reduce burdens, such as using existing data sources to verify income, allowing self-attestation for asset verification, and minimizing the frequency of redeterminations. 

## The Impact of Work Requirements on Health Insurance and Employment 

Beyond health care, Medicaid-funded services provide transportation and other supports to obtain and maintain competitive employment. Evidence from other public benefits programs with work requirements indicate that, while there are exemptions for individuals who prove unable to work, convoluted administrative processes result in many people with disabilities losing benefits. Work requirements are challenging, due to administrative errors where individuals are incorrectly classified as able to work, racial, and ethnic bias in administering sanctions for noncompliance with work requirements, and disparities in how work requirements and automatic exemptions are issued for people with disabilities.[endnoteRef:97] [97:  National Health Law Program, “Highlights: ’Unfit’ to Work? How Medicaid Work Requirements Hurt People with Disabilities,” May 2023, https://healthlaw.org/wp-content/uploads/2023/05/HIGHLIGHTS-Work-Req-for-PWD_05122023_DMedits.pdf. ] 

**STATE EXAMPLE:** Arkansas Medicaid Work Requirements include a 10-step online exemption process for those who are not automatically exempted. Less than half or only 11 percent of the applicants who reported serious health limitations (30% of the population) obtained long-term exemptions.

## Work Requirements and Section 1115 Waivers

On January 28, 2021, the Biden Administration released an Executive Order issuing policies to advance Medicaid and ACA. Several state Medicaid Section 1115 demonstrations have been funded to test policy and program innovations. Section 1115 waivers impose work and reporting requirements (community engagement) as a condition for Medicaid eligibility. A review of Medicaid demonstrations revealed the following:[endnoteRef:98] (1) new eligibility requirements have led to coverage losses and other adverse effects for beneficiaries; (2) Medicaid work requirements or community engagement requirements sometimes lead to coverage losses, less access to care, and no improvements in employment, job training, or other employment-related activities; and (3) programs involving health savings account–like arrangements or healthy behavior incentives are often confusing and produce administrative challenges for beneficiaries. Evidence also suggests that people of color experience disproportionate negative effects.[endnoteRef:99] [98:  Assistant Secretary for Planning and Evaluation Office of Health Policy, “Issue Brief: Medicaid Demonstrations and Impact on Health Coverage: A Review of Evidence,” March 11, 2021, https://aspe.hhs.gov/sites/default/files/private/pdf/265161/medicaid-waiver-evidence-review.pdf. ]  [99:  Assistant Secretary for Planning and Evaluation Office of Health Policy, “Issue Brief: Medicaid Demonstrations and Impact on Health Coverage: A Review of Evidence,” March 11, 2021, https://aspe.hhs.gov/sites/default/files/private/pdf/265161/medicaid-waiver-evidence-review.pdf. ] 

Work reporting requirements systems have historically failed and led to inevitable loss of benefits for workers, parents, students, and people with disabilities.

## Consumer Protections and Medical Debt

Medical debt remains one of the leading causes of bankruptcy and a major risk factor for homelessness among people with disabilities. Larger shares of people in poor health (21%) and living with a disability (15%), including uninsured people, report having medical debt[endnoteRef:100] compared with people without disabilities (7%).[endnoteRef:101] Even for people with disabilities who receive SSI benefits, and who also automatically become eligible for Medicaid health insurance under Title XVI (16), the monthly benefit amount is often not enough. These benefits are reduced based on income, living in a Medicaid facility, or having someone who provides financial support.[endnoteRef:102]  [100:  Kaiser Family Foundation, “News Release: 1 in 10 Adults Owe Medical Debt, with Millions Owing More Than $10,000,” May 10, 2022, https://www.kff.org/health-costs/press-release/1-in-10-adults-owe-medical-debt-with-millions-owing-more-than-10000/. ]  [101:  Neil Bennett et al., “Who Had Medical Debt in the United States?” U.S. Census Bureau, April 7, 2021, https://www.census.gov/library/stories/2021/04/who-had-medical-debt-in-united-states.html.]  [102:  Azza Altiraifi, “Policy Basics: Supplemental Security Income,” Center on Budget and Policy Priorities, August 12, 2022, https://www.cbpp.org/research/social-security/supplemental-security-income.] 

## Home and Community-Based Services Waivers 

Access to much-needed waiver services for employment and other support is critical to the economic independence of people with disabilities. Asset and resource limits, in addition to long waiver waiting lists, state enrollment caps, and variations in state eligibility criteria, make it challenging for people with disabilities to access waiver services and/ or work across state lines. 

HCBS waivers authorized under Section 1915(c) of the Social Security Act provide long-term services and supports to individuals who prefer to live in their home or community versus institutional settings.[endnoteRef:103] ACA provided opportunities and incentives to states to expand and innovate their HCBS programs and allow broader access to individuals who previously were unable to access Medicaid services for which there were no HCBS waivers. Despite significant investments to expand Medicaid, the COVID-19 pandemic disproportionately affected people with disabilities who rely on long-term services and supports to meet independent living needs, including supported employment. Long-term services and supports (LTSS) are provided through a variety of HCBS waivers.  [103:  Centers for Medicaid & Medicare, “Home and Community-Based Services 1915(c),” accessed September 20, 2022, https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html. ] 

Of the more than 200 waivers offered nationally, only 9 waivers do not have asset limits, and 75 percent of states apply $2,000 asset limits (for an individual) for HCBS.[endnoteRef:104] In addition, financial eligibility limits are maximum 300 percent of SSI in 75 percent of states[endnoteRef:105] ($2,742 per month for an individual in 2023). In other states, income thresholds are as low as 100 percent FPL[endnoteRef:106] ($1,215 per month for an individual in 2023). In addition, waiver waiting lists and state enrollment caps make it challenging for waiver recipients to work across state lines. In 2020, people waited an average of 44 months to receive services.[endnoteRef:107] [104:  Molly O’Malley Watts, MaryBeth Musumeci, and Meghana Ammula, “State Policy Choices About Medicaid Home and Community-Based Services amid the Pandemic,” Kaiser Family Foundation, March 4, 2022, https://www.kff.org/report-section/state-policy-choices-about-medicaid-home-and-community-based-services-amid-the-pandemic-issue-brief/.]  [105:  Molly O’Malley Watts, MaryBeth Musumeci, and Meghana Ammula, “State Policy Choices About Medicaid Home and Community-Based Services amid the Pandemic,” Kaiser Family Foundation, March 4, 2022, https://www.kff.org/report-section/state-policy-choices-about-medicaid-home-and-community-based-services-amid-the-pandemic-issue-brief/.]  [106:  Molly O’Malley Watts, MaryBeth Musumeci, and Meghana Ammula, “State Policy Choices About Medicaid Home and Community-Based Services amid the Pandemic,” Kaiser Family Foundation, March 4, 2022, https://www.kff.org/report-section/state-policy-choices-about-medicaid-home-and-community-based-services-amid-the-pandemic-issue-brief/.]  [107:  Molly O’Malley Watts, MaryBeth Musumeci, and Meghana Ammula, “State Policy Choices About Medicaid Home and Community-Based Services Amid the Pandemic,” Kaiser Family Foundation, March 4, 2022, https://www.kff.org/report-section/state-policy-choices-about-medicaid-home-and-community-based-services-amid-the-pandemic-issue-brief/.] 

Reducing variation in HCBS eligibility and benefits across states and reciprocity should include expanding Medicaid eligibility for working people with disabilities. People with disabilities who access HCBS employment supports are relegated to living and working within the state they receive services in for several reasons. Medicaid HCBS are optional, so not all services are accessible across states. Services provided under an HCBS waiver are also not covered by private insurance and are expensive for people to pay out of pocket. Most states offer Section 1915 (i) HCBS options, which include supported employment. In addition, direct care worker shortages result in less access to supported employment.

Increased investment in HCBS programs through the American Rescue Plan Act should result in capacity increases, even post-federal dollars. These efforts can be advanced by requiring states and schools to work together to conduct automatic screening of all Medicaid enrollees for HCBS in tandem with expending adequate resources to assess waiver eligibility, creating more uniform access to waivers and eligibility criteria across states, and eliminating waitlists. Over half of the people on waiting lists, nationally, are from nine states that do not screen eligibility for any HCBS waivers.[endnoteRef:108] Changes in the number of people waiting for HCBS services are explained by policy actions in the states of Louisiana and Ohio:[endnoteRef:109] [108:  Molly O’Malley Watts and Meghana Ammula, “A Look at Waiting lists for Home and Community-Based Services from 2016 to 2021,” Kaiser Family Foundation, November 28, 2022, https://www.kff.org/medicaid/issue-brief/a-look-at-waiting-lists-for-home-and-community-based-services-from-2016-to-2021.]  [109:  Molly O’Malley Watts and Meghana Ammula, “A Look at Waiting lists for Home and Community-Based Services from 2016 to 2021,” Kaiser Family Foundation, November 28, 2022, https://www.kff.org/medicaid/issue-brief/a-look-at-waiting-lists-for-home-and-community-based-services-from-2016-to-2021.] 

Louisiana eliminated its waiting lists of over 30,000 applicants for Intellectual and Developmental Disability (I/DD) services in 2020.

Ohio developed a new waiting list assessment in 2019 that removed ineligible people from the list who did not meet the waiver criteria. These individuals were provided with other Medicaid state resources where applicable, cutting the list from 69,000 to 2,000 people.

States should create a network of providers and workers to deliver HCBS waiver support and increase funding provisions to help expand the home care and provider workforce. The direct care worker shortage is largely due to persistently low wages, with 70 percent of personal care workers earning less than $30,000 per year across care settings.[endnoteRef:110] States should also work together to create a national menu of HCBS services and eliminate waiting lists, which would also allow people with disabilities to move and work across state lines. Making HCBS mandatory would provide life-changing support for the more than 800,000 people waiting for services.  [110:  Molly O’Malley Watts, MaryBeth Musumeci, and Meghana Ammula, “State Policy Choices About Medicaid Home and Community-Based Services amid the Pandemic,” Kaiser Family Foundation, March 4, 2022, https://www.kff.org/report-section/state-policy-choices-about-medicaid-home-and-community-based-services-amid-the-pandemic-issue-brief/.] 

There are a couple of major things in the Medicaid space. Doing [what] we can to eliminate wait lists is critical. Making sure we provide home and community-based services to the people that want it. And [getting] folks out of congregate care settings such as nursing homes is critical. People want to live their lives as fully and independently as possible. Whether it is bureaucratic restraints or policy constraints that hinder that fundamental aspect of living [...] all that is going to do is lead to worse health outcomes. 

—NCD Listening Session Participant

**RECOMMENDATION:** CMS should increase funding levels for Medicaid HCBS and remove the institutional bias necessitating HCBS to be provided as a “waiver” of the institutional setting requirement for LTSS. Require automatic HCBS waiver screening eligibility for all Medicaid recipients to reduce the number of people on waiting lists and increase access to critical services that allow individuals to move and work across state lines.

## Expanding Wealth and Access Protection Through HCBS Waivers

The HCBS waiver participant cap was raised to $35,000 in 2021.[endnoteRef:111] Other financial considerations provided by the program include the exclusion of a spouse’s income to maintain Medicaid benefits.[endnoteRef:112] Work incentives allow people with disabilities to maintain their Medicaid and keep all or a portion of their SSI cash payments. Most working individuals are challenged by the reality that both cash benefits and earnings from employment are countable income, with no deductions except for Blind Work Expenses (BWE). The result is that individuals with resources or earnings in excess of benefits program limits are required to “spend down” their resources to meet the threshold requirements for Medicaid and other benefits, establish a qualifying income trust (which is not available in every state), or find another program that meets their needs. Similar challenges arise as individuals attempt to access HCBS long-term services and supports to continue living in their community. [111:  U.S. Department of Health and Human Services, “Application for 1915(c) HCBS Waiver: NH.0397.R04.00,” January 2021, https://www.dhhs.nh.gov/sites/g/files/ehbemt476/files/documents/2021-11/dltss-ihs-waiver.pdf.]  [112:  Medicaid and CHIP Payment and Access Commission, “1915 (c) Waivers,” 2022, https://www.macpac.gov/subtopic/1915-c-waivers/.] 

Part of the challenge with HCBS waiver waiting lists is that these lists are not representative of the Medicaid population, as most are people with intellectual and developmental disabilities and comprise less than half the individuals served through 1915(c) waivers, which is the largest share of Medicaid HCBS spending. States vary widely in their eligibility pathways, with a few opting to eliminate asset limits. LTSS financial eligibility for HCBS also extends beyond state plan limits, with most applying the same or less rigorous financial and functional eligibility criteria for HCBS. On average, 56 percent of total Medicaid LTSS dollars are spent on HCBS (from 30% to 83% across states).[endnoteRef:113]  [113:  Molly O’Malley Watts, MaryBeth Musumeci, and Priya Chidambaram, “State Variation in Medicaid LTSS Policy Choices and Implications for Upcoming Policy Debates,” February 26, 2021, Kaiser Family Foundation, https://www.kff.org/report-section/state-variation-in-medicaid-ltss-policy-choices-and-implications-for-upcoming-policy-debates-issue-brief/.] 

In addition, significant concerns remain regarding spousal impoverishment standards, including asset limits, and post-eligibility treatment of income (PETI) policies which vary across states. Long-Term Care (LTC) Insurance Partnership Programs are one way that married couples with disabilities may preserve a portion of their assets and income. For example, the Massachusetts LTC Insurance Partnership Program specifies that with a partnership policy, people with disabilities can qualify for Medicaid without spending down or exhausting their assets to pay for care.[endnoteRef:114]  [114:  Enid Kassner, “Long-Term Care Insurance Partnership Programs,” AARP Public Policy Institute, April 2006, https://www.aarp.org/health/medicare-insurance/info-2006/fs124_ltc_06.html.] 

**STATE EXAMPLE:** Massachusetts HCBS Expansion of Non-Modified Adjusted Gross Income (MAGI) pathways removes asset limits and adopts special income rules for HCBS only, which places financially eligibility at 300 percent SSI. Massachusetts HCBS programs cater to low-income residents who qualify for institutional level care but prefer to remain at home. 

# Chapter 4: Employment and the Workforce System

Federal and state policies can shift employment for workers with disabilities—including youth and adults—away from limited options, such as sheltered workshops, subminimum wage, and dead-end jobs, into career paths with living wage earnings, benefits, and lifelong careers. However, significant barriers remain for many people with disabilities to enter competitive integrated employment. These include the lack of affordable, accessible public and private transportation in every region of the country; insufficient knowledge and skills building for people with disabilities of all ages in financial planning and maintenance of benefits; a convoluted system of health, employment, and disability benefits that serves as a disincentive to work; and pervasive social stigma that carries into the workplace as employers and managers continue to doubt the abilities of workers with disabilities, leading to continued lower employment rates, lower wages, and fewer promotions.

## Workforce Innovation and Opportunity Act 

The 2014 Workforce Innovation and Opportunity Act (WIOA) required greater collaboration across federal and state agencies to improve the national workforce system, better align state workforce development programs, and support outcomes for those with significant barriers to employment. The workforce includes youth and adults with disabilities who continue to lag in employment outcomes including competitive integrated employment, competitive wages, and long-term careers that lead to financial stability and economic independence. Under WIOA, states are required to submit a Unified State Plan to the U.S. Department of Labor (DOL), Employment and Training Administration (ETA); the U.S. Department of Education, Rehabilitation Services Administration (RSA) and the Office of Career, Technical and Adult Education (OCTAE); and the U.S. Department of Health and Human Services (DHHS), Temporary Assistance for Needy Families (TANF).[endnoteRef:115] State planning requires a collaborative approach to strategically align the public workforce system; state Workforce Development Boards (WDBs) are also tasked with regional strategic planning to address the needs of all workers including those with disabilities. State plans also reflect the needs of employers for a prepared, career-ready workforce, and the development of a unified intake processes to build on-ramps to employment for youth and adults with and without disabilities seeking employment. [115:  “The Workforce Innovation and Opportunity Act State Plan,” Workforce Innovation Opportunity Act State Plan Portal, U.S. Department of Education, https://wioaplans.ed.gov/.] 

A Government Accountability Office (GAO) report in 2022 pointed out that data submitted to DOL from the six WIOA core programs did not include co-enrollment information for two-thirds of participants.[endnoteRef:116] Many states have developed common intake forms to gather basic information from participants, but there are not systems or processes in all states to share data. Job seekers with disabilities require a coordinated system to address any combination of job skills training, education, and experience in addition to potential barriers, such as accessible transportation. [116:  U.S. Government Accountability Office, “Workforce Innovation and Opportunity Act: Additional Steps Needed to Help States Collect Complete Enrollment Information,” November 2022, https://www.gao.gov/products/gao-23-104830.] 

Although the responsibility for inclusion of people with disabilities is shared across state agencies, a truly comprehensive and inclusive system would ensure that people with disabilities can be served by any WIOA-funded agency. As one Listening Session participant commented, “There could be a central, secure location for client information and yearly documents such as bank statements, expenses, and [other] information so that someone with a disability was not burdened with multiple complex forms to fill out. If each agency could have a standardized release form for the info they required, it would greatly reduce the stress level of [participants].”

It remains unclear to what degree WIOA requirements for state-level agency integration have changed these inequities in services to job seekers with disabilities. Understanding which programs, services, and strategies are effective in serving workers with disabilities across state and local agencies can improve these systems across the board. State plans and state agencies refer clients with disabilities to the vocational rehabilitation agency as a default, instead of building capacity to serve all clients across the state system. State plans should address the specific needs of job seekers with disabilities, including financial planning, the impact of earnings on benefits, and strategies to engage benefits counseling for job seekers with disabilities. 

How have dollars been spent and what have we learned from those dollars so far? Is [WIOA] doing what it set out to do? 

—NCD Listening Session Participant

**RECOMMENDATIONS:**

Federal WIOA Departments of Labor and Education should fund a comprehensive review of state plans and determine strategies that may be evaluated and replicated, as well as fund evaluation of promising state strategies. Establish accountability metrics for serving people with disabilities across all agencies, not just VR. This should include a comprehensive review of changes across state plans and an evaluation of the impact of those plans to determine which strategies have been most effective in increasing coordination and collaboration, how they have done so, and how those changes have led to improved outcomes, and for which participants.

State vocational rehabilitation agencies (SVRAs) should establish data-sharing agreements as part of their memoranda of understanding (MOU) and, with data security procedures in place, establish databases that communicate common data elements with core WIOA partners. Existing state longitudinal data systems (SLDS) may serve as a starting point for developing shared data across agencies that house the six core WIOA partners.

SVRAs are the largest workforce system in the United States, serving working-age adults and youth with disabilities with a combination of federal and state funding. VR has been shown to be cost-effective in supporting employment for people with disabilities, particularly those deemed to have the most severe disabilities.[endnoteRef:117] In addition to SVRAs, employment resources and opportunities that include the American Job Centers, Job Corps, registered apprenticeships, veterans’ services, and youth-specific options such as YouthBuild serve youth and adults with disabilities. All public services are required to be fully accessible. However, an evaluation of American Job Centers (AJCs) showed that physical accessibility is common, but programmatic and communication systems remain inaccessible for many people with disabilities.[endnoteRef:118] Of the nearly 2,400 AJCs, most locations (63%) were not fully accessible, despite the AJC certification requirement to ensure accessibility. In some states, SVRAs have partnered with AJCs to improve access through physical and programmatic changes.[endnoteRef:119] [117:  Michelle Yin et al., “Return on Investment of Vocational Rehabilitation Services for Transition-Age Youth with Disabilities in Maine,” 2021, Washington, DC: American Institutes for Research.]  [118:  Anne Chamberlain et al., "Evaluating the Accessibility of American Job Centers for People with Disabilities: Final Report. U.S. Department of Labor, Contract No. DOLU129633698, Task Order No. DOL-OPS-14-U-00038,” Columbia, MD: Impaq International, LLC, January 2017.]  [119:  Brittany English and Pamela Holcomb, “New Requirements for American Job Center Systems Regarding One-Stop Operators, Partnership Agreements, and Certification,” Mathematica Policy Research: Princeton, NJ, November 2020.] 

Despite the fact that the 2014 law seemed to tout that it was integrating all of these workforce programs to better serve populations with significant barriers to employment, we are finding very low numbers of veterans with significant disabilities and people with disabilities actually coming out of workforce training programs. 

—NCD Listening Session Participant

In NCD Listening Sessions, people with disabilities shared their experience with public services including AJCs, SVRAs, and other social service agencies. Participants pointed to the need for better and increased communication between agencies.

We need to work with AJCs and other development systems to ensure each [...] person’s discovery process [and] employment profile is fully individualized to their specific goals and interests. 

—NCD Listening Session Participant

Family engagement is a vital factor in supporting clients with disabilities through the VR system. Parents and family members (or guardians) influence expectations for work among consumers. They have valid concerns about access to or the potential loss of health care and disability benefits as well as long-term care for their family members with disabilities. For some families, disability benefits are valuable enough to serve as a disincentive to work. Other families may need additional support to understand how to maintain benefits while transitioning into competitive integrated employment (CIE). Managing expectations while supporting aspirations to work is an important aspect of the workforce service provider role. Developing the capacity of these staff must include family engagement strategies, and benefits and financial counseling. Staff should receive up-to-date information and skills enhancement in areas such as technology, industries, and careers (not just entry-level jobs), entrepreneurship and small business development, gig work, use of social media for job searches, and financial training for clients. Professional development is an additional investment in staff that may help to reduce turnover, which can be high in some agencies or fields. Professional development may allow staff to expand their knowledge of the populations they serve, including learning evidence-based strategies to serve youth and people with mental health conditions, providing self-advocacy training, creating mentoring and peer mentoring programs, and addressing the intersections of disability with other characteristics including race and gender identity. 

I think that people with disabilities should be able to use AJC systems along with VR, particularly when they no longer need specific rehabilitation services. 

—NCD Listening Session Participant

**RECOMMENDATIONS:** DOL should monitor and ensure all AJCs are fully accessible to people with disabilities. DOL should move beyond compliance to build capacity among provider agencies including disability awareness, Americans with Disabilities Act of 1990 (ADA) rights and responsibilities, and effective practices to support new and returning workers with disabilities. Provide training to workforce development providers on disability awareness and best practices for recruiting, hiring, and supporting workers with disabilities. 

## Transition Age Youth with Disabilities

One significant change in requirements under WIOA was an increased focus on youth, including youth with disabilities (defined by WIOA as ages 14 to 24 years). SVRAS are now required to spend 15 percent of their funds to provide pre-employment and transition services (Pre-Employment and Transition Services [Pre-ETS]) to students with disabilities, including those who may not be eligible for VR services. As shown in Table 1, some states, such as Virginia, were already providing services to more than 50 percent of youth with disabilities in 2016 and saw that percentage increase (51% of youth in program year [PY] 2017 to 53.23% of youth in PY 2020), while other states, such as California, saw rapid declines in the percentage of youth served (47.8% in PY 2017 to 39.4% in PY 2020). The trends across almost all states since the implementation of WIOA have been to serve fewer people overall, even pre-COVID-19 pandemic.

Table 1. Change in Percentage of Youth Served by the Vocational Rehabilitation Program from Program Year 2017 to Program Year 2021, National and Five States

Source: U.S. Rehabilitation Services Administration 911 data.

During this period, several SVRAs have struggled to spend the required 15 percent of funds and have been challenged to serve the growing number of potentially eligible students with disabilities to meet the WIOA requirements.[endnoteRef:120] One result of this increased and important focus on students with disabilities has been an increase in administrative burden for states and an increase in unused funds returned to RSA.[endnoteRef:121]  [120:  U.S. Department of Education, Office of Special Education and Rehabilitative Services, Rehabilitation Services Administration, “The State Vocational Rehabilitation Services Program Before and After the Workforce Innovation and Opportunity Act: Report for April 2020,” Washington, DC.]  [121:  U.S. Department of Education, Office of Special Education and Rehabilitative Services, Rehabilitation Services Administration, “The State Vocational Rehabilitation Services Program Before and After the Workforce Innovation and Opportunity Act: Report for April 2020,” Washington, DC.] 

States may request waivers to WIOA requirements that are limited in duration. In 2022, several approved state waivers reflected challenges that states had in reaching out-of-school youth (OSY) and serving in-school youth. WIOA outlined Pre-ETS that states may employ to direct students with disabilities toward a career path and employment. For example, Tennessee’s Division of Rehabilitation Services developed a best practice guide for Pre-ETS that provides guidance on meeting eligibility requirements, collaborating with other agencies, ensuring accessibility and confidentiality in programming, and delivering virtual content (especially during the pandemic).[endnoteRef:122] A review of the literature on Pre-ETS in 2021 offers strategies for job exploration counseling, work-based learning experiences, workforce readiness preparation, and self-advocacy strategies to support employment outcomes for students with disabilities.[endnoteRef:123] The review also pointed to the need for training VR staff on these strategies to ensure successful implementation.[endnoteRef:124]  [122:  Tennessee Department of Human Services (DHS), “Virtual Pre-Employment Transition Services: A best practice guide,” July 2020, https://www.tn.gov/content/dam/tn/human-services/documents/TN%20Virtual%20Pre-ETS%20Best%20Practice%20Guide_FINAL.pdf. ]  [123:  Elizabeth Frentzel et al., “Pre-Employment Transition Services for Students with Disabilities: A Scoping Review,” Journal of Vocational Rehabilitation 15, no. 54(2021): 103–116, https://doi.org/10.3233/JVR-201123. PMID: 33994763; PMCID: PMC8081404.]  [124:  Elizabeth Frentzel et al., “Pre-Employment Transition Services for Students with Disabilities: A scoping review,” Journal of Vocational Rehabilitation 15, no. 54(2021): 103–116, https://doi.org/10.3233/JVR-201123. PMID: 33994763; PMCID: PMC8081404.] 

Replicated in 47 states, Project SEARCH is a model that provides work training experiences for youth and young adults with intellectual and developmental disabilities. In Virginia, Project SEARCH has had an 85 percent success rate for students with an Intellectual or Developmental Disability (I/DD) to find jobs after graduation, and in New York a longitudinal study found that the program had an 83 percent success rate.[endnoteRef:125] Case studies and outcome measures indicate that Project SEARCH is a successful program for students who meet the program criteria that also establishes career pathways with businesses and industries in local and state environments. However, more rigorous research is needed to show the impact of the program in various industries and to show the value of work-based learning opportunities for students with disabilities for employers. Overall, there is a lack of research on strategies to serve youth with disabilities who are from underserved populations, including youth from different demographic, regional, socioeconomic, and other backgrounds, as well as those with intersectional identities.  [125:  Virginia Commonwealth University, “Project SEARCH – VCU Center on Transition Innovations,” accessed September 20, 2022, https://centerontransition.org/projects/search.cfm. ] 

Youth with disabilities who enter the workforce for the first time face multiple challenges, such as understanding their benefits and how these change as they gain employment or move out of their family homes; creating savings plans and learning how to manage their income; and exploring their independence as young adults. Individualized Education Programs (IEPs) developed in the K–12 system do not transfer beyond school. Many young people choose not to self-disclose their disability due to stigma or fear of discrimination, which in turn leads to a potential lack of resources and supports that could support their independence at work or in postsecondary settings.[endnoteRef:126],[endnoteRef:127] Fostering economic independence among youth and young adults with disabilities in the workplace requires a greater focus on advocacy and self-advocacy training and collaboration with families.  [126:  Emma Cole and Stephanie Cawthon, “Self-Disclosure Decisions of University Students with Learning Disabilities,” Journal of Postsecondary Education and Disability 28, no. 2 (2015): 163–179.]  [127:  Sally Lindsay et al., “Disability Disclosure and Workplace Accommodations Among Youth with Disabilities,” Disability and Rehabilitation 41, no. 16 (2019): 1914–1924.] 

WIOA, from my perspective, had the most impact on youth transition programs [and] put a lot more resources into youth transition. [The] school system has its own system of supports, but we certainly saw a lot more integration of agencies, a lot more of state VR entering the schools, our local mental health agencies partnering with the schools, and [...] a lot more tools for school-to-work. That being said, we [...] have about the same unemployment rate. We have about the same wage disparity, wage inequity. [And] parents will tell us it’s just night and day [moving] from [...] the school system to the adult system. 

—NCD Listening Session Participant

The Virginia Department of Aging and Rehabilitative Services funds the Wilson Workforce and Rehabilitation Center (WWRC) in Fishersville, Virginia. WWRC offers a range of postsecondary education, vocational training, vocational evaluation, and workplace readiness programming. The state VR agency or high schools across the state may refer participants to the WWRC, where they reside for a period while receiving training in business and information technology, manufacturing and production, services, and trades (including auto mechanics, culinary skills, and health occupations).

**RECOMMENDATION:** Federal WIOA Departments of Labor and Education should invest in rigorous research and evaluate practices that are successful in transitioning youth with disabilities into careers. Ensure that state departments of education and VR are collaborating with parents and youth (including out-of-school youth) on efforts to improve transition outcomes with an emphasis on building advocacy and self-advocacy skills in the workplace for students with disabilities, ensuring the provision of benefits advisement services and financial planning. 

## Competitive Integrated Employment

WIOA defines competitive integrated employment (CIE) as work that is part- or full-time and ensures that workers with disabilities are compensated fairly, receive benefits, and advance in ways that are equitable to their colleagues without disabilities. In 2020, NCD published its report *Policies from the Past in a Modern Era: The Unintended Consequences of the AbilityOne Program & Section 14(c)* to indicate that the federal government funds a program that works against CIE by offering segregated jobs.[endnoteRef:128] Even when AbilityOne contracts offer salaries at or above minimum wage, the program typically places employees in segregated settings where the majority of workers have a disability. This is neither competitive nor integrated. In Mississippi in 2020, 10 entities serving 832 individuals, held 14(c) waiver certificates.[endnoteRef:129] These numbers have decreased significantly from 2016 when 23 entities with 14(c) waivers served 4,809 individuals.[endnoteRef:130] At the same time, during the program years 2016–2019, the percentage of people with disabilities who were employed increased from 17.9 percent to 19.3 percent, a slightly higher trend than for working-age adults without disabilities (65.3% to 66.3%).[endnoteRef:131] [128:  “Policies from the Past in a Modern Era: The Unintended Consequences of the AbilityOne Program & Section 14(c),” National Council on Disability, October 2020, https://ncd.gov/sites/default/files/NCD_AbilityOne_508.pdf.]  [129:  U.S. Department of Labor, “Subminimum Wage,” accessed September 20, 2022, https://www.dol.gov/agencies/whd/special-employment#:~:text=Employment%20of%20Workers%20with%20Disabilities%3A%20Section%2014(c)%20of,for%20the%20work%20being%20performed.]  [130:  U.S. Department of Labor, “Subminimum Wage,” accessed September 20, 2022, https://www.dol.gov/agencies/whd/special-employment#:~:text=Employment%20of%20Workers%20with%20Disabilities%3A%20Section%2014(c)%20of,for%20the%20work%20being%20performed.]  [131:  U.S. Bureau of Labor Statistics, “Employment–Population Ratio for People with a Disability Increases to 21.3 Percent in 2022,” The Economics Daily, accessed June 21, 2023, https://www.bls.gov/opub/ted/2023/employment-population-ratio-for-people-with-a-disability-increases-to-21-3-percent-in-2022.htm.] 

Multiple initiatives, including state-led Employment First programs, have aligned policies to better support CIE outcomes. National policy organizations, in collaboration with federal agencies, have worked with state legislators to develop guidance around creating and aligning policies that support employment and self-employment outcomes for people with disabilities.[endnoteRef:132]  [132:  Elizabeth Whitehouse, Kyle Ingram, and Bobby Silverstein, “Work Matters: A Framework for States on Workforce Development for People with Disabilities,” The National Task Force on Workforce Development for People with Disabilities, Washington, DC: U.S. Department of Labor, Office of Disability Employment Policy, December 2016.] 

From 2014 to 2019 , Michigan’s Employment First initiative increased competitive employment for youth with I/DD and mental illness and developmental disabilities from 7 percent to 9 percent while reducing the portion of workers in sheltered workshops.[endnoteRef:133] The proportion of individuals who are unemployed, but looking for work, increased significantly from 6 percent to 17 percent, but those not in the labor force decreased, as did the number in facility-based programs.[endnoteRef:134] During the same time frame, the percentage of workers earning minimum wage doubled (from 32% to 65%). Although the state still offers 14(c) certificates, the total number of requests for certificates has decreased by more than 3,000.[endnoteRef:135]  [133:  Michigan Developmental Disabilities Council, “Employment First in Michigan,” Michigan Developmental Disabilities Institute, Wayne State University, and Michigan Protection & Advocacy Service, Inc., November 2019. ]  [134:  Michigan Developmental Disabilities Council, “Employment First in Michigan,” Michigan Developmental Disabilities Institute, Wayne State University, and Michigan Protection & Advocacy Service, Inc., November 2019.]  [135:  Michigan Developmental Disabilities Council, “Employment First in Michigan,” Michigan Developmental Disabilities Institute, Wayne State University, and Michigan Protection & Advocacy Service, Inc., November 2019.] 

**RECOMMENDATION:** State legislatures should enact Employment First legislation to support CIE for all residents. Conduct cost-benefit analyses that estimate the increase in taxable wages resulting from increased CIE.

Pathways to careers and economic self-sufficiency are supported through policies and practices intended to increase CIE in which workers, with and without disabilities, have equal opportunities for work, earnings, and advancement. As of the end of 2022, at least 13 states had removed or were moving toward removing subminimum wage (phasing out 14(c) labor certificates), and employers were shifting away from sheltered workshops into competitive employment practices.[endnoteRef:136] Studies have consistently shown that CIE settings have a cost–benefit compared with sheltered workshops, although successful transition requires supports.[endnoteRef:137] Adults who have been in subminimum wage employment and segregated settings for any length of time will require a combination of careful analysis of the barriers that may prevent them from entering CIE and intensive job supports to make a successful shift. Employers that choose to phase out 14(c) may require technical assistance and training in how to support employees to transition effectively to CIE, beginning with raising expectations of both employees and their families or guardians to understand how to manage benefits as wages increase. [136:  Association of People Supporting Employment First (APSE), “State Legislative Watch: 14(c)/subminimum wage legislation,” Washington, DC: APSE, February 2023, https://apse.org/state-legislation/#:~:text=14(c)%2Fsubminimum%20wage%20legislation&text=Note%3A%20The%20following%20states%20have,%2C%20South%20Carolina%20%26%20Rhode%20Island. ]  [137:  Joshua Taylor et al., “Cost-Benefit Analyses of Employment Services for Individuals with Intellectual and Developmental Disabilities: A Scoping Review,” Journal of Vocational Rehabilitation 54, no. 2 (2021): 193–206.] 

The May 2023 Department of Labor Wage and Hour Division report showed that 41,730 workers with disabilities were receiving subminimum wages nationally, with community rehabilitation services providers holding the majority of special certificates.[endnoteRef:138] Passage of WIOA amended the 14(c) subminimum wage program to require employers holding special certificates to provide and document regular career counseling services and information about training opportunities to all workers receiving subminimum wage, and to offer additional services to workers with disabilities under age 24, including transition services and vocational rehabilitation services prior to paying subminimum wages. These programmatic changes were intended to encourage employers and workers to prioritize and pursue CIE opportunities, including customized employment options. Since then, advocates have successfully lobbied for passage of several state laws completely banning or phasing out subminimum wages. In many instances, the enabling statutes implement a phase-out period of several years, including prohibitions on hiring any new workers at subminimum wage, but permitting some workers still receiving subminimum wage to continue doing so for a specified period. Others specifically implement a gradual increase in the wages such workers with disabilities receive until their wage is on par with the state minimum wage, requiring several years before all workers with disabilities will be paid at or above minimum wage. Some examples of states that have passed legislation to reduce and ultimately eliminate subminimum wage are as follows:  [138:  “14(c) Certificate Holders,” U.S. Department of Labor, Wage and Hour Division, June 1, 2023, https://www.dol.gov/agencies/whd/workers-with-disabilities/section-14c/certificate-holders.] 

In 2016, Maryland’s Ken Capone Equal Employment Act prevented any new hires at subminimum wage and required individualized plans for each person receiving subminimum wage to transition to at least minimum wage by 2020. 

In June 2019, Oregon’s governor signed a bill mandating a gradual increase over four years to the absolute minimum wage permissible to pay workers with disabilities, increasing the lowest subminimum wage until it matches the statewide minimum wage by July 1, 2023.

In May 2022, South Carolina passed a bill prohibiting 14(c) certificate holders in the state from paying subminimum wage; the bill also created a task force to oversee transition plans for workers with disabilities receiving subminimum wage (S.C. Code § 41-6-10, 41-6-20). The phase-out must be complete by August 1, 2024.

In March 2023, Minnesota legislators introduced SF-2669, a bill that if passed, would prohibit employers from hiring any new employee with a disability at a subminimum wage after August 1, 2023, and require payment of at least minimum wage to all employees with disabilities by August 1, 2025.

In April 2023, Virginia passed HB-1924, a bill aiming to eliminate subminimum wage in the state by 2030. This bill permits payment of subminimum wage to workers with disabilities who were already receiving subminimum wage under the federal 14(c) certificate prior to July 1, 2023, but no workers will be permitted to receive subminimum wage after July 1, 2030.

These legislative examples represent positive changes, but state progress will inevitably slow in the absence of a national mandate for minimum wage in CIE settings. In addition, grandfathered periods and gradual increases of subminimum wage thresholds over several years still subject workers with disabilities to wages that, in some cases, amount to only cents on the dollar. This practice may continue for years after the passage of legislation intended to limit the practice as the U.S. Commission on Civil Rights and NCD have both recommended. However, such phase-outs are a strategy intended to avoid an abrupt loss of opportunity for people with disabilities who have not previously been supported in transitioning to meaningful work at or above the minimum wage in an integrated setting. Elimination of the subminimum wage must be accompanied by sufficient funding for transition support and employment services to assist people with disabilities in finding appropriate work opportunities after exiting sheltered workshops and other subminimum wage settings.

WIOA raised the bar in employment policy by adopting the idea of putting people to work in their communities, moving away from a strategy of inclusion through isolation, and prioritizing true inclusion through integration. WIOA has had tremendous success by providing practical resources, measurable legal standards, and customized career coaching and counseling that have pushed the vision of WIOA forward in a tangible, impactful way. 

—NCD Listening Session Participant

Another pathway to long-term careers that offer strong wages and benefits is the use of Registered Apprenticeships (RAs). In the past decade, there has been a growing focus on expanding RAs to move beyond standard trades (construction, manufacturing) to high-growth industries (IT, health care) that can serve as a path for youth and adults with disabilities. DOL has introduced requirements and incentives to increase inclusion of people with disabilities in apprenticeship and pre-apprenticeship programs while encouraging SVRAs to consider RAs as an additional career pathway for consumers of those services. This presents another opportunity to educate employers about the value of hiring people with disabilities and the people with disabilities about RAs as a career option. 

At the federal level, in 2023, the House Committee on Education and the Workforce published a section-by-section fact sheet on the National Apprenticeship Act. This Act has been reintroduced to emphasize inclusion of people with disabilities as an underserved population and use “equity intermediaries” to support nontraditional apprenticeship groups that include the disability population. In Michigan in 2019, House Bill 4579 required “local workforce development boards to create a peer-to-peer apprenticeship mentoring program for individuals with disabilities, racially/ethnically marginalized, and women.”[endnoteRef:139] In Oregon, the State Apprenticeship and Training Council requires that RAs conduct outreach and recruitment for apprenticeship to include people with disabilities and, importantly, to capture data on the numbers of people with disabilities by occupation in the RA program using the federal 7 percent utilization goal as a guideline for recruitment goals.[endnoteRef:140]  [139:  Michigan Legislature, “H.B. 4579, 2019-2020 Session,” May 9, 2019.]  [140:  Oregon State Apprenticeship and Training Council, Oregon Apprenticeship and Training Division, “Oregon Plan for Equal Employment Opportunity in Registered Apprenticeship Programs,” Oregon.gov, accessed September 20, 2022, https://www.oregon.gov/boli/apprenticeship/Documents/The%20Oregon%20Plan.pdf. ] 

**RECOMMENDATIONS:**

DOL and corresponding state departments should require a proportion of RA positions to be filled by people with disabilities commensurate with the percentage of working-age adults with disabilities in each state. DOL’s Office of Apprenticeship (OA) and State Apprenticeship Agencies (SAAs) should ensure that disability inclusion is part of the technical assistance provided to program sponsors and should provide incentives to increase the proportion of people with disabilities in RAs. 

SVRAs should reach out to employers through employer networks and Workforce Investment Boards (WIBs)/WDBs to offer disability awareness and ADA training, to share resources for employers to better support employees, and to emphasize the value of hiring people with disabilities.

## Disability Inclusion for Federal Contractors

In 2013, DOL’s Office of Federal Contract Compliance Programs (OFCCP) revised regulations on implementing Section 503 of the Rehabilitation Act of 1973. The revision required federal contractors to actively recruit and hire people with disabilities to achieve a national utilization goal of 7 percent or more employees with disabilities. This change leverages employers who receive federal funding to recognize their responsibility to recruit, hire, and retain employees with disabilities. Also, federal contractors are required to collect data from employees on a voluntary basis to include whether they have a disability and the type of disability. Some businesses have optimized this utilization goal requirement to develop processes and examine their procedures to increase employment for people with disabilities. The size of the federal contractor workforce is significant and rose to about five million workers in 2020, which means that meeting the full utilization goal would result in hundreds of thousands of additional jobs for people with disabilities.[endnoteRef:141] [141:  Paul C. Light, “The True Size of Government Is Nearing a Record High,” October 7, 2020, https://www.brookings.edu/articles/the-true-size-of-government-is-nearing-a-record-high/.] 

Although OFCCP monitors federal contractors and collects data on the 7 percent utilization goal, it is limited in that the agency can only point to a failure to meet the goal and request companies to self-assess to determine corrective action. Table 2 shows recent data on violations of Section 503, and Table 3 provides data on disability complaints that were made and closed. Data varies significantly during the years that include the COVID-19 pandemic.

Table 2. OFCCP Supply and Service Compliance Evaluations, FY 2019–2023

Data Source: U.S. Department of Labor (n.d.), *OFCCP by the Numbers.*

Table 3. OFCCP Complaints by Basis, FY 2019–2023

Data Source: U.S. Department of Labor (n.d.), *OFCCP by the Numbers.*

OFFCP data is limited by the sheer number of federal contractors that exist in the United States, and these do not reflect nonfederal and private industry employers who are not required to meet these obligations. Nonetheless, this data underscores the need to continue to emphasize the value of employees with disabilities, as well as the strategies needed to recruit, hire, and retain people with disabilities. The policy has led to greater attention being paid to disability in the workforce through planning required by federal contractors to reach their goal, which may help to dispel fears and stigma held by some employers. 

Listening Session participants suggested implementing social media campaigns as one means to increase public awareness and reduce the stigma related to disability. As one participant noted, “[W]hat we need is a social marketing campaign to educate the world about the abilities of people with disabilities, so that they are no longer viewed as them versus us or different [...] including disability as part of diversity and therefore, altering the minds of people who don’t know what they don’t know. [L]like [...] Smokey the Bear was the most successful social marketing campaign [the country] had. We need something equivalent to Smokey the Bear.”

**RECOMMENDATION:** States should invest in national public service announcement (PSA) campaigns to change the conversation about people with disabilities as valuable members of society and contributors to their communities. Highlight workers with disabilities and help to normalize the conversation about disability in the U.S. workforce. 

## State as Model Employer

Several states have policies in which the state government serves as a model employer through executive orders or legislation or some combination of the two.[endnoteRef:142] States such as Massachusetts have used an executive order to establish affirmative action and diversity plans to increase the hiring of people with disabilities and eliminate barriers to work.[endnoteRef:143] Training for state staff will help to ensure that policies and procedures to increase the hiring of people with disabilities in states including Illinois, Minnesota, and Ohio are effective. Maryland was the first state to establish a cabinet-level Secretary of Disabilities, who also leads the Department of Disabilities, to compliance with laws, promote coordination of services to people with disabilities, and to increase public awareness of disabilities statewide.[endnoteRef:144]  [142:  Rachel Wright and Dina Klimkina, “The State as a Model Employer of People with Disabilities: Policies and Practices for State Leaders,” Washington, DC: Council of State Governors, 2023, https://seed.csg.org/wp-content/uploads/2022/07/Accessible-Final_SAME_SEED_Report.pdf.]  [143:  The Commonwealth of Massachusetts, “Executive Order No. 478 – Order Regarding Non-Discrimination, Diversity, Equal Opportunity, and Affirmative Action,” January 30, 2007, https://www.masslegalservices.org/system/files/library/executive-order-478.pdf.]  [144:  Maryland Department of Disabilities (MDOD), “Department of Disabilities,” Maryland State Government, accessed September 20, 2022, https://msa.maryland.gov/msa/mdmanual/12dod/html/dodf.html#:~:text=In%201977%2C%20the%20Department%20of,295%2C%20Acts%20of%201984. ] 

Virginia. In 2020, then-governor Northam signed Executive Order (EO) 47 to prioritize hiring of people with disabilities in Virginia state government, emphasized greater access to higher education and training for Virginians with disabilities, and required a review of state websites and technology for accessibility. Following EO 47, the Virginia Department of Aging and Rehabilitative Services (DARS) applied for funding from the RSA through a Disability Innovation Fund (DIF) grant to create advanced career pathways for people with disabilities. One strategy of that approach has been to create embedded employee roles within the Virginia Departments of Labor and Industry and Human Resource Management to liaise between those agencies and Virginia DARS in support of increased hiring and improved practices and to offer training on disability awareness to department staff. In addition, Virginia established an alternative hiring process for job applicants with disabilities, which requires a certification of disability obtained through Virginia DARS.[endnoteRef:145] [145:  “Executive Order No. 47 – Expanding Opportunities for Virginians with Disabilities, LEAD Center, https://leadcenter.org/state_policies/executive-order-no-47-expanding-opportunities-for-virginians-with-disabilities/.] 

Massachusetts joined a growing number of states that offer tax incentives to employers to hire people with disabilities. In 2021 then-governor Baker instituted the Massachusetts Disability Employment Tax Credit (DETC), which provides tax incentives to businesses that hire people with disabilities and is a complementary policy to the federal Work Opportunity Tax Credit (WOTC). The Massachusetts Department of Revenue promulgated regulations on the DETC in April 2023, specifying, among other provisions, that employers may either claim the credit as a refund or consider the credit an overpayment to be carried over into the following tax year. It also specified that employees with disabilities for whom an employer claims credit must have been employed for at least a 12-month consecutive period (830 CMR 63.38JJ.1, Code of Massachusetts Regulations [CMR]). These provisions emphasize the importance of longevity of tenure and prevent employers from hiring workers with disabilities for temporary periods with no intent of retaining them, or merely as a means to claim tax incentives. Because the regulations were recently established, data is not yet available on numbers of employers claiming the DETC or employees with disabilities for whom they are receiving credit.

## Workplace Access and Accommodations

Shifts in the economy that resulted from the COVID-19 pandemic have led to opportunities even as the economy remains in recovery. Initially, the COVID-19 pandemic caused employment rates to drop significantly with a greater impact on workers with disabilities.[endnoteRef:146] However, unlike the previous recession, employment rates for people with disabilities increased and have, in fact, surpassed the rate of increase for workers without disabilities.[endnoteRef:147] Some of this increase and continued rise in employment reflects the growing use of remote work and, as more work opportunities become or remain remote, people with disabilities are likely to continue to see increased job opportunities. Remote work may also provide part-time workers with more flexibility to increase their hours and thus their earnings. A necessary factor in remote work is the ability of people with disabilities to obtain accessible technology and the skills to use it. Policies that support assistive technology, workforce accommodations that include accessible tools and software, and ongoing training on technology, particularly for older adults with disabilities, can help sustain this momentum for remote work.  [146:  Adam Ozimek, “Remote Work Is Enabling Higher Employment Among Disabled Workers. Economic Innovation Group,” Economic Innovation Group, October 2022, https://eig.org/remote-work-is-enabling-higher-employment-among-disabled-workers/.]  [147:  Adam Ozimek, “Remote Work Is Enabling Higher Employment Among Disabled Workers. Economic Innovation Group,” Economic Innovation Group, October 2022, https://eig.org/remote-work-is-enabling-higher-employment-among-disabled-workers/.] 

Working at home allowed many people with chronic conditions the dignity of work without the indignity of having to leave early frequently, which can be seen as a sign of weakness in the workplace. 

—NCD Listening Session Participant

Employers with 15 or more employees must provide reasonable accommodations to employees with disabilities; however, most employers are not aware of the resources available to them to meet the needs of employees with disabilities or to understand what is “reasonable.” A study conducted in 2017 found that 30 percent of white-collar workers in full-time positions have a disability, but only 21 percent of those employees with disabilities disclosed their disability at work.[endnoteRef:148] Employees do not disclose their disability at work when they fear stigmatization, harassment, or lack of opportunities due to the perceptions of their managers or coworkers. On the other hand, employees who do not self-disclose miss the opportunity to legally request reasonable accommodations and support that can benefit them in doing their jobs effectively. In either case, ongoing discrimination and pervasive stigma in the workplace can lead to lower salaries, slower rates of promotion, and long-term loss of income over a lifetime.  [148:  Laura Sherbin et al., “Disabilities and Inclusion: U.S. Findings,” Center for Talent Innovation, 2017, https://www.gvsu.edu/cms4/asset/84F0C257-C32C-FC93-486E49F37BF9A9E6/disabilitiesinclusion_keyfindings-cti.pdf.] 

## Self-Employment and the Gig Economy

Self-employment rates for people with disabilities have been consistently higher than that of people without disabilities.[endnoteRef:149] In the past several years, the U.S. workforce has shifted toward more gig work – this gig economy has implications for people with disabilities who need to understand how gig work may impact their benefits while allowing them an opportunity to earn wages as an independent contractor. For those workers who require accommodations and assistive technology, gig work may not be a viable option without access to resources at low or no cost. In addition, accessibility of physical places, various workspaces, and online resources is necessary for successful engagement in the gig economy.  [149:  U.S. Bureau of Labor Statistics, “Persons with a Disability: Labor Force Characteristics Summary 2022: USDL-23-0351,” February 2023.] 

Gig industries may not understand their responsibilities as employers of people with disabilities such as ensuring nondiscrimination.[endnoteRef:150] Concomitantly, workers with disabilities may not be aware of their rights and responsibilities, including paying their own taxes and insurance or how to protect themselves from exploitation.[endnoteRef:151] Gig workers with disabilities still require health care. Those who are not eligible for 1619(b), buy-in, or other health care programs and come close to earnings at the maximum allowed by Supplemental Security Income (SSI), are forced to reduce work hours, earn less, and save less to maintain their health care benefits.  [150:  Dina Klimkina, Bobby Silverstein, and Aja Croteau, “The Future of the Workforce: Approaches to Increasing Access and Inclusion: Options for State Policymakers Across Three Emerging Issues,” The Council of State Governments, 2020. ]  [151:  Dina Klimkina, Bobby Silverstein, and Aja Croteau, “The Future of the Workforce: Approaches to Increasing Access and Inclusion: Options for State Policymakers Across Three Emerging Issues,” The Council of State Governments, 2020. ] 

## Artificial Intelligence and Technology

Technology access and the workforce continue to grow in importance for workers and potential workers with disabilities. The impact comes in multiple ways—through ensuring accessibility of technology (hardware and software), accommodations to access the technology, and the growing use of artificial intelligence (AI) as a tool used by employers to select potential employees. In 2023, the Biden Administration published principles for ensuring protections for Americans to prevent algorithmic discrimination against people with disabilities.[endnoteRef:152] The Administration calls for an impact assessment to ensure disparities do not occur due to algorithms that may result in the de-selection or reduced opportunities for job applicants with disabilities.  [152:  The Whitehouse, “Blueprint for an AI Bill of Rights,” March 2023, https://www.whitehouse.gov/ostp/ai-bill-of-rights/. ] 

Given the growing prevalence in the use of AI by employers to select, employ, and train job candidates, it is important that these tools and mechanisms are designed and assessed to prevent discrimination against people with disabilities. Such discrimination may occur because AI tools are often inaccessible to job candidates or workers with disabilities, unlawfully screen out otherwise qualified candidates with disabilities, disproportionately negatively impact workers with disabilities on the job, or function as unlawful preemployment medical examinations or other disability-related inquiries.[endnoteRef:153],[endnoteRef:154] Disability discrimination in AI can have a chilling effect on the employment process, as job seekers with disabilities may not self-disclose in order to get and keep a job, despite the need for reasonable accommodations that could support their success at work.  [153:  Lydia Brown, Ridhi Shetty, and Michelle Richardson, “Report – Algorithm-Driven Hiring Tools: Innovative Recruitment or Expedited Disability Discrimination?” Washington, DC: Center for Democracy and Technology, December 2020, https://cdt.org/insights/report-algorithm-driven-hiring-tools-innovative-recruitment-or-expedited-disability-discrimination/. ]  [154:  “The Americans with Disabilities Act and the Use of Software, Algorithms, and Artificial Intelligence to Assess Job Applicants and Employees,” May 12, 2022, U.S. Employment Opportunity Commission, https://www.eeoc.gov/laws/guidance/americans-disabilities-act-and-use-software-algorithms-and-artificial-intelligence.] 

The U.S. Department of Labor, Office of Disability Employment Policy (ODEP) has gathered input from stakeholders for ways to ensure equitable access.[endnoteRef:155] ODEP also funds projects to build awareness of how to use AI equitably and how to engage people with disabilities at the design and development phase of production to address biases that may be built into tools and products. Additionally, the U.S. Equal Opportunity Employment Commission (EEOC) and U.S. Department of Justice issued joint guidance in 2022 addressing the potentially discriminatory impact of AI hiring tools on job candidates with disabilities. This guidance includes recommendations for best practices by employers to avoid discriminatory use of AI tools or procurement of tools where it may not be possible to mitigate discriminatory impact.[endnoteRef:156]  [155:  U.S. Department of Labor Office of Disability Employment Policy (ODEP), “Readout: Department of Labor Gathered Experts, Stakeholders to Ensure More Inclusive Hiring as Automated Technology Affects Decision-Making,” April 17, 2023, https://www.dol.gov/newsroom/releases/odep/odep20230417.]  [156:  “The Americans with Disabilities Act and the Use of Software, Algorithms, and Artificial Intelligence to Assess Job Applicants and Employees,” May 12, 2022, U.S. Employment Opportunity Commission, https://www.eeoc.gov/laws/guidance/americans-disabilities-act-and-use-software-algorithms-and-artificial-intelligence.] 

**RECOMMENDATION:** Federal agencies, including the Departments of Labor and Commerce, should create incentives for technology companies to engage with and hire people with disabilities in their research and development programs. They should establish policies that require disability inclusion and analysis of AI with a disability inclusion lens to prevent discrimination and enforce ethical use of AI in support of advancing an inclusive workforce.

## Employment and Health 

Economic independence for people with disabilities must entail a combination of employment options and maintenance of health care benefits. The current system requires that individuals make a drastic choice between work or health care. Choosing work may entail low earnings, no health care, and limited wealth accumulation for people with disabilities living near or below the poverty line. Choosing public health benefits means remaining in poverty with no way to accumulate assets. Attempts to work through the programs currently offered means battling bureaucratic red tape to maintain benefits while building assets—and for those with complex health conditions, this may require greater risk-taking to shift from dependence to independence.

Although most full-time workers are covered by employer-sponsored health insurance, the proportion of people with disabilities with health care coverage has decreased slightly from 90.3 percent in 2016 to 89.9 percent in 2021.[endnoteRef:157] Access to health insurance supports the ability of individuals to find and keep employment, and some evidence points to the value of having a job and its positive effects on an individual’s health.[endnoteRef:158] Unemployment can have a negative impact on one’s health, including those who lose Medicaid coverage due to work requirements.[endnoteRef:159] Although all individuals who lose employment require health care coverage, unemployed individuals with the lowest incomes have the greatest unmet health care needs.[endnoteRef:160] [157:  A. Houtenville, S. Bach, and S. Paul, “Annual Report on People with Disabilities in America: 2023,” Durham, NH: University of New Hampshire, Institute on Disability, 2023.]  [158:  Larisa Antonisse and Rachel Garfield, “The Relationship Between Work and Health: Findings from a Literature Review,” San Francisco, CA: Kaiser Family Foundation, August 2018. ]  [159:  Larisa Antonisse and Rachel Garfield, “The Relationship Between Work and Health: Findings from a Literature Review,” San Francisco, CA: Kaiser Family Foundation, August 2018.]  [160:  Jin Huang, Julie Birkenmaier, and Youngmi Kim, “Job Loss and Unmet Health Care Needs in the Economic Recession: Different Associations by Family Income,” American Journal of Public Health 104, no. 11 (November 2014): 178–183.] 

## Stay at Work/Return to Work

Stay at work/return to work (SAW/RTW) programs have been designed and implemented in multiple states to encourage the continued employment of people who sustain an injury or acquire an illness while working. State-led programs are designed to support SAW/RTW employers and workers while building collaboration between health and employment systems.[endnoteRef:161] Returning to work and maintaining good quality jobs have been found to support mental health and general health as well.[endnoteRef:162] Importantly, maintaining health coverage (whether through Medicaid or through work) supports positive health outcomes.[endnoteRef:163] Currently, five states, funded through a joint project with DOL and the Social Security Administration (SSA), are piloting early interventions to increase employment while reducing the need for long-term disability benefits such as Social Security Disability Insurance (SSDI) or SSI. Results from the evaluation of these state initiatives will help in understanding which strategies are effective in supporting long-term sustainable employment for individuals who are ill or injured while working. These programs will become increasingly important as a growing number of individuals are living with long-COVID. [161:  Austin Nichols et al., “Synthesis of Stay-at-Work/Return-to-Work (SAW/RTW) Programs, Models, Efforts, and Definitions,” U.S. Department of Labor, Cambridge, MA: Abt Associates, 2018.]  [162:  Larisa Antonisse and Rachel Garfield, “The Relationship Between Work and Health: Findings from a Literature Review,” San Francisco, CA: Kaiser Family Foundation, August 2018. ]  [163:  Larisa Antonisse and Rachel Garfield, “The Relationship Between Work and Health: Findings from a Literature Review,” San Francisco, CA: Kaiser Family Foundation, August 2018.] 

****

**RECOMMENDATIONS:**

DOL and SSA should support the expansion or replication of SAW/RTW programs across states while improving these programs based on evidence about how they are used most effectively. Examine outcomes from the work of pilot states and disseminate findings with state agencies. Leverage national associations for workforce development, employers, and health care to disseminate findings and increase the reach of these programs to potential partners in states. 

## Work Incentives and Federal Benefits Programs

Ticket to Work (TTW) is a work incentive program with the goal of helping people receiving disability benefits obtain employment and work toward greater independence and increased self-sufficiency.[endnoteRef:164] While this is a valuable approach for some people with disabilities, others may continue to require SSI and health care benefits provided through public assistance programs even after they achieve substantial gainful activity (SGA) and earnings above the asset limits set for recipients of SSI and/or Medicaid.  [164:  Notes: Ticket to Work services include employment planning, benefits counseling, and protection and advocacy services (through the Protection and Advocacy for Beneficiaries of Social Security, PABSS).] 

Programs like Plan to Achieve Self-Support (PASS) and TTW encourage recipients to work, but they do not address all disincentives built into the SSI and Medicaid programs. Several studies in the past several years have attempted to tweak aspects of SSI and SSDI; however, the overall design of SSI and Medicaid should be examined to improve benefits to people with disabilities while supporting their efforts to enter or return to the workforce. For example, studies have shown that work benefits counseling is a successful strategy to help SSI participants increase their earnings while maintaining benefits.[endnoteRef:165] In 2019, the Committee for a Responsible Federal Budget proposed specific reforms to SSDI that are relevant to SSI—they recommend conducting pilot projects to test small changes before scaling up, running multiple pilots with variations to build knowledge quickly, and to engage stakeholders including benefits recipients.[endnoteRef:166]  [165:  Timothy Tremblay et al., “Effect of Benefits Counseling Services on Employment Outcomes for People with Psychiatric Disabilities,” Journal of Psychiatric Services 57, no. 6 (June 2006): 816–821.]  [166:  Jason Fichtner and Jason Seligman, “Developing Social Security Disability (SSDI) Reform Demonstrations to Improve Opportunities and Outcomes Based on Lessons Learned,” Committee for a Responsible Federal Budget, McCrery-Pomeroy SSDI Solutions Initiative: Washington, DC, February 2019.] 

**RECOMMENDATION:** SSA should engage researchers and stakeholders to design pilot programs that address barriers to work due to SSI benefits limitations and conduct formative assessments to generate approaches for changing the system. 

## Poverty and Disability 

Many households in the United States, including households led by or including family members with disabilities, are struggling financially. Their household income may be above the Federal Poverty Level (FPL), but still be insufficient to meet basic needs of the family. United for ALICE reports on asset limited, income constrained, employed (ALICE) households. In 2019, 21.4 percent of working-age adults with disabilities (ages 18 to 64 years) in the United States were living in poverty; 30.5 percent were ALICE households, and less than half were above the ALICE threshold.[endnoteRef:167] ALICE statistics illustrate the need for wages sufficient to meet the costs of living, transportation, child care, and other costs associated with maintaining employment.  [167:  United for Alice, “Alice in Focus Series: Financial Hardship Among People with Disabilities,” United Way of Northern New Jersey, https://www.unitedforalice.org/focus-disabilities#:~:text=The%20ALICE%20Disability%20Data%20Dashboard,the%20Federal%20Poverty%20Level%20(Poverty). ] 

Programs that have been established for those living in poverty do not consider the additional restrictions placed on people with disabilities who must limit their accumulation of wealth to continue to receive health care. Work incentives and opportunities to work must be established independent of requirements for health care benefits, which are vital to families with members with disabilities. 

In general, when people hold more assets (not only earned income but also savings, investments, and other asset holdings) they are more likely to focus on their finances, plan for the future, and care for their investments such as property.[endnoteRef:168]  [168:  Michael Sherraden, “Assets and the Poor: Implications for Individual Accounts and Social Security. Invited Testimony to the President’s Commission on Social Security,” Washington, DC, October 2001.] 

**RECOMMENDATION:** SVRAs should expand financial training for people with disabilities through existing public service providers and partner with financial establishments to reach a broader cross section of communities that include people with disabilities, particularly communities of color. Congress should revise the definition of SGA to account for additional costs of living with a disability alongside the current national average wage index and geographically adjusted cost of living. Congress should propose and pass legislation to expand SSA benefits offset for people with disabilities transitioning to SGA with earnings above the income threshold, to prevent abrupt termination of benefits and possibly sharp reductions in total income at the end of the trial work period and three-month grace period.

# Chapter 5: Asset Building and Wealth Protection

Asset poverty has myriad implications for establishing and maintaining long-term economic security. A little over 60 percent (60.5%) of households containing someone with a disability are asset poor, regardless of employment status.[endnoteRef:169] High levels of medical and educational debt and inadequate medical insurance coverage, employment volatility and unfair wages, racial and gender discrimination, ableism, disproportionate access to financial services, public policy-imposed income and asset limitations, and all-round inadequate supports for small business ownership are some of the financial challenges faced by people with disabilities. Between 2018 and 2022, 57 percent of respondents to the Financial Health Pulse® survey living with disabilities were chronically financially unhealthy and experienced persistent financial struggles.[endnoteRef:170] [169:  Azza Altiraifi, “A Deadly Poverty Trap: Asset Limits in the Time of the Coronavirus,” Center for American Progress, April 7, 2020, https://www.americanprogress.org/article/deadly-poverty-trap-asset-limits-time-coronavirus/.]  [170:  Financial Health Network, “Four Out of Five Americans Were Financially Unhealthy at Least Once Over Last Five Years,” April 19, 2023, https://finhealthnetwork.org/four-out-of-five-americans-were-financially-unhealthy-at-least-once-over-last-five-years/ ] 

Benefits provided by public safety net programs are often not enough to provide recipients with long-term financial security through program participation alone. Households with an adult with a work disability require 29 percent more income (or an additional $18,322 per year median household income) to obtain a comparable standard of living to households without an adult living with a disability.[endnoteRef:171] In addition, low asset limits penalize Supplemental Security Income (SSI) recipients for saving.[endnoteRef:172] Exceeding asset limits often results in the loss of cash benefits and, in some cases, Medicaid, housing, and other supports; therefore, recipients refrain from saving for emergencies and major life events, or for retirement. As a result, beneficiaries with disabilities are substantially limited in their ability to prepare for both short-term financial emergencies and long-term needs.[endnoteRef:173] In addition, “spend down” policies force beneficiaries to deplete their monthly income and savings to maintain public assistance. The resulting lack of savings leaves households with disabilities more vulnerable to economic shocks and unable to achieve economic independence.  [171:  Zachary A. Morris, Stephen V. McGarity, Nanette Goodman, and Asghar Zaidi, “The Extra Costs Associated with Living with a Disability in the United States,” Journal of Disability Policy Studies 33, no. 3 (September 9, 2021): 158–167, https://doi.org/10.1177/10442073211043521.]  [172:  Zachary Morris et al., “The Extra Costs Associated with Living with a Disability in the United States,” Journal of Disability Policy Studies 33, no. 3 (September 9, 2021): 158–167, https://doi.org/10.1177/10442073211043521.]  [173:  Nanette Goodman, Bonnie O’Day, and Michael Morris, “Financial Capabilities of Adults with Disabilities,” National Disability Institute, 2017, https://www.nationaldisabilityinstitute.org/wp-content/uploads/2019/01/ndi-finra-report-2017.pdf. ] 

Several government-sponsored programs exist to help people with disabilities achieve and maintain financial independence including Small Business Administration (SBA) self-employment and entrepreneurship opportunities, Achieving a Better Life Experience (ABLE) accounts, and individual development accounts (IDAs). Challenges persist with each of these programs and policy reform is required to ensure programs are effective at meeting the needs of people with disabilities, particularly low-income, and asset limited, income constrained, employed (ALICE) individuals. Properly leveraged, these programs allow people with disabilities to maximize savings above current resource limits. This is significant given that alternatives provided through various Special Needs Trusts (SNTs), or Qualified Income Trusts (QITs) remain inaccessible for many individuals due to the costs of establishing, funding, and administering these trusts.

## Asset Limits Deny Access to Wealth Building Programs

The issue of inadequate access is apparent across several public benefits programs and initiatives. This lack of access often results in low uptake of certain program benefits that would be useful for achieving economic independence. The issue of access is twofold: (1) There is a lack of access to communication and information about how to successfully navigate asset building programs, including ABLE accounts and SNTs; and (2) asset limits prevent low-income individuals from accessing certain benefits that require either financial investments to participate, and/or knowledge of investments to effectively navigate these programs.

## Achieving a Better Life Experience (ABLE) – 529A Plan

ABLE accounts, created by the Achieving a Better Life Experience Act of 2014, authorized tax-advantaged section 529A accounts to help people with disabilities save for their current and future needs without affecting eligibility for federally funded means-tested benefits and programs such as SSI, Medicaid, and Supplemental Nutrition Assistance Program (SNAP). The funds may be used to pay for qualified disability expenses (QDEs), including housing, education, transportation, health, prevention and wellness, employment training and support, assistive technology, and personal support services. In 2018, the Tax Cuts and Jobs Act made several changes to ABLE accounts, including increasing annual account limits to $15,000 and increasing compensation amounts to Federal Poverty Level (FPL) for that year. Other important changes included allowing account beneficiaries to claim tax-free distributions and investment earnings via Internal Revenue Service (IRS) Saver’s Credit (Form 8880 Credit for Qualified Retirement Savings Contributions).[endnoteRef:174] Despite these changes, ABLE accounts remain underutilized, and few have been opened to date. [174:  Internal Revenue Service, “Tax Reform Affects ABLE Accounts, Saver’s Credit, 529 Rollovers,” January 31, 2023, https://www.irs.gov/newsroom/tax-reform-affects-able-accounts-savers-credit-529-rollovers. ] 

More recently, the ABLE Age Adjustment Act further amended Section 529A of the Internal Revenue Code and extended the age of disability onset to before 46 years old (up from before 26 years old). This change will potentially extend eligibility for ABLE savings accounts to 6.2 million additional Americans including more than 1 million veterans. These changes become effective January 1, 2026.[endnoteRef:175] However, several challenges persist with current ABLE initiatives, and evidence of the policy’s effectiveness remain under review. Several areas for policy reform have been identified related to participation requirements, contributions and asset limits, program outreach and awareness, and financial education. [175:  “History of the ABLE Act,” ABLE National Resource Center, 2023, https://www.ablenrc.org/what-is-able/history-of-the-able-act/. ] 

## The Cost of Participation

There is a premium to participate in ABLE accounts. In addition to needing to have residual income to invest, enrollees are also subject to account fees, which can erode any savings or earnings from investments, particularly for low net worth individuals. There are costs associated with managing each investment plan, including annual and fund-related fees. There are also costs for electronic statements and reports, and some plans have required account seeding and contributions minimums. Considered an option primarily for the rich, ABLE uptake remains low across programs, despite attempts to increase awareness of programs and to seed accounts with start-up monies for low-income individuals. Wealthier ABLE account holders who are able to afford financial planners and trustees, can reap the benefits provided through the ABLE Act, whereas individuals with lower net worths often do not have access to these resources. NCD Listening Session participants pointed to the challenges associated with funding ABLE accounts, even for those with reasonable assets and income.

I think [...] things like the ABLE account are really good, but again, [...] it was almost oversold because you can put [$17,000] a year into an ABLE account, they’ve been in existence for five years now and yet the average ABLE account on a national level is still less than $10,000. So, I don’t know where people thought the money was going to come from.

—NCD Listening Session Participant

Savings and retirement planning are often not a point of focus for people with disabilities who are trying to meet their immediate financial needs for daily living. As such, service providers who support these individuals are more often concerned with providing information and support for social safety programs rather than savings and investment programs to build wealth and acquire assets. Service providers may also be unaware of ABLE accounts or how to leverage for program participants.

The “double death tax” imposed by Medicaid recapture prevents the savings accounts of people with disabilities from being dispersed to family members after the account holder dies. Medicaid recapture means states recover payments from an individual’s estate for health care services including nursing facility services, home and community-based services, and related hospital and prescription drug services.[endnoteRef:176] This practice works against generational wealth building and serves as a disincentive to use allowable savings accounts such as ABLE. Surviving children and dependents lose access to ABLE accounts if the account holder received Medicaid (per 26 U.S. Code 529A(f) “Transfer to State” clause).[endnoteRef:177] Current exceptions to recapture rules do not allow ABLE balance transfers to spouses or children of account holders. Under certain circumstances, accounts can be transferred to siblings or step siblings with a qualifying disability.[endnoteRef:178]  [176:  Centers for Medicare and Medicaid Services, “Estate Recovery,” https://www.medicaid.gov/medicaid/eligibility/estate-recovery/index.html.]  [177:  “26 U.S. Code § 529A – Qualified ABLE programs,” Cornell University Legal Information Institute, https://www.law.cornell.edu/uscode/text/26/529A.]  [178:  Boris Abbey and Lewis Hershey, “Does the ABLE Enable the Wealthy and Disable the Poor?” Journal of Financial Services Professionals 7, no. 2 (March 2016): 46–52, https://www.emich.edu/cob/documents/2016_does_the_able_act_enable_the_wealthy_and_disable_the_poor.pdf.] 

**Promising Legislation**—Tennessee’s ABLE Estate Recovery Prohibition Bill - HB 0371/ SB 0363[endnoteRef:179] [179:  Tennessee Disability Coalition, “1.27.23 TDC Weekly Public Policy Update,” 2023, https://www.tndisability.org/article/12723-tdc-weekly-public-policy-update. ] 

This bill, proposed in January 2023, would prohibit the state of Tennessee from recouping ABLE funds upon the death of an account holder. This would provide an incentive for people with disabilities to open ABLE accounts by protecting those funds from estate recovery. The Bill prohibits seeking recovery for medical assistance paid or filing any claim under federal law provisions concerning qualified ABLE programs in that state.

## Factors Influencing Low ABLE Account Uptake

Participants of the 2023 NCD Listening Sessions with disability stakeholders identified several factors that result in low uptake of ABLE programs: (1) a lack of trust in financial services and government-sponsored financial programs, (2) a lack of autonomy around individual decision making for people with disabilities, (3) financial illiteracy and financial exclusion among the disability population, and (4) a lack of knowledge and information about ABLE accounts among service providers and people with disabilities. Their concerns are reflected in current policy conversations about this program. 

In August 2016, the Municipal Securities Rulemaking Board (MSRB) issued guidance under Rule D-12 which indicates that ABLE programs may be subject to U.S. Securities Exchange Commission (SEC) rules and, as of June 2018, per Rule G-45 require reporting of aggregate program information on assets, contributions, distributions; transaction fee information, investment options, and performance data.[endnoteRef:180] Despite this, a lack of program accountability and related consumer protections results in a lack of trust in ABLE programs. Unlike SEC filings which are public data, the MSRB does not disseminate reported information publicly. Another concern is that ABLE investment products may not be registered with the SEC or other banking and investment regulators.[endnoteRef:181] For example, a review of programs including New York ABLE (NYABLE) and MarylandABLE reveals that, except for checking or cash account options, accounts are not FDIC-insured, states offer no account guarantees, and only some program managers are registered investment advisers.[endnoteRef:182],[endnoteRef:183] In addition, ABLE account holders can make changes in current investments only twice per year, which means they have greater market risk exposure.[endnoteRef:184]  [180:  “MSRB Role with ABLE Programs,” Municipal Securities Rulemaking Board, 2023, https://www.msrb.org/MSRB-Role-ABLE-Programs.]  [181:  Erin Vallely, “How ABLE Accounts Fail Disabled People,” Center for Disability Rights, https://cdrnys.org/blog/disability-dialogue/how-able-accounts-fail-disabled-people/.]  [182:  “Frequently Asked Questions,” New York Able, 2022, https://www.mynyable.org/home/what-is-ny-able/faqs.html.]  [183:  “Program Disclosure Booklet,” Maryland ABLE, December 1, 2021, https://www.marylandable.org/uploads/maryland-able/attachments/clf1kcs9w0wvu0jlpfz79cvsb-maryland-able-plan-disclosure-booklet.pdf.]  [184:  Boris Abbey and Lewis Hershey, “Does the ABLE Enable the Wealthy and Disable the Poor?” Journal of Financial Services Professionals 7, no. 2 (2016): 46–52, https://www.emich.edu/cob/documents/2016_does_the_able_act_enable_the_wealthy_and_disable_the_poor.pdf.] 

## ABLE Outreach and Education

Participant feedback from NCD Listening Sessions suggest that knowledge of ABLE accounts remains low among employers of people with disabilities, social safety net program provider staff, and people with disabilities, and these factors contribute to low program uptake. Of the eight million people with disabilities who currently qualify, only 137,000 have an ABLE account, with $1.25 billion in investments.[endnoteRef:185] ABLE accounts require knowledge of how to invest, which is knowledge that the average person with disability or financial and public benefits counselors may not possess. In addition, not all states offer plans that provide qualified financial advisors to support account holders in making investment decisions (or plans sold by financial advisors). To date, only Virginia has reported that it has both an ABLE plan and a “financial advisor sold plan” —ABLEAmerica.[endnoteRef:186] [185:  “Achieving a Better Life Experience (ABLE),” National Association of State Treasurers (NAST), last updated December 31, 2022, https://nast.org/able-advocacy/.]  [186:  “Americans with Disabilities Can Now Leverage the Experience of Financial Advisor to Open Their ABLE Account,” ABLEnow, July 30, 2018, https://www.globenewswire.com/news-release/2018/07/30/1544030/0/en/Americans-With-Disabilities-Can-Now-Leverage-the-Experience-of-a-Financial-Advisor-to-Open-Their-ABLE-Account.html] 

Studies have shown that trusted intermediaries are critical to supporting financial inclusion for people with disabilities, especially those with intersecting identities.[endnoteRef:187],[endnoteRef:188] Financial and public benefits counselors are important information intermediaries who support financial decision making for people with disabilities. NCD Listening Session participants underscored the importance of having a trusted system of information in helping people with disabilities navigate asset building and savings: [187:  George Okello et al., “Examining the Role of financial Intermediaries in Promoting Financial Literacy and Financial Inclusion Among the Poor in Developing Countries: Lessons from Rural Uganda,” Cogent Economics and Finance no. 8 (2020): 1761274, https://doi.org/10.1080/23322039.2020.1761274.]  [188:  U.S. Consumer Financial Protection Bureau, “Empowering Low Income and Economically Vulnerable Consumers. Report on a National Convening,” November 2013, https://files.consumerfinance.gov/f/201311_cfpb_report_empowering-economically-vulnerable-consumers.pdf.] 

The challenges that face persons of color [who have a disability] as it relates to asset limits is one, again, depending on their household and how they were raised, their family may not have the assets to begin with. So how are they accumulating it for them to hit an asset limit, and then resource restrictions? Well sometimes, the information is so muddled that individuals of color are just looking for any kind of safety net. So, they’re relying on word of mouth from church or, “I heard this from there.” And [with] those resource restrictions, they may just go into a complete spend down without knowing there are such things such as ABLE accounts or possibly a special needs trust that could help mitigate some of that. Or somebody’s aunt passes and the first thing that’s told to them is, “You can’t have a house.” Or, “That house is valued and will put you over the resource limit.” So, then they’re trying to find someone that pays cash for houses that will give them pennies on the dollar. And it’s because [...] they don’t have a trusted system to give them that information. 

—NCD Listening Session Participant

## Financial Capability Education

Financial capability education is an important strategy to address the lack of understanding among people with disabilities of how to manage their money and engage in financial behaviors that lead to economic independence. Financial education is an important aspect of financial inclusion that facilitates full participation in society and increases access to financial products. Studies have found that improving people’s ability to manage their finances or financial capability directly improves their well-being and indirectly improves their health.[endnoteRef:189],[endnoteRef:190] [189:  Peter Allmark and Katarzyna Machaczek, “Financial Capability, Health and Disability,” BMC Public Health 15, no. 1 (2015), https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-015-1589-5.]  [190:  Stephen McGarity et al., “Assessing Financial Capability Among People with Disabilities,” Journal of Social Work 20, no. 5 (2019): 657–672, https://doi.org/10.1177/1468017319860308.] 

Twenty-eight states, Puerto Rico, and the District of Columbia passed financial literacy legislation in 2021.[endnoteRef:191] Though there is an increased effort to advance financial education and capability at both state and federal levels, mainstream efforts are not targeted to youth and adults with disabilities and exclude important benefits education and career coaching components. Youth with disabilities are more likely to be employed and earn higher hourly wages after they receive work incentives and benefits counseling.[endnoteRef:192] Benefits counseling is therefore a necessary accompaniment to asset limit reform and a vital component for advancing financial inclusion for people with disabilities. The following states have enacted financial education legislation: [endnoteRef:193] [191:  National Association of State Legislatures, “Financial Literacy 2021 Legislation,” December 20, 2021, https://www.ncsl.org/financial-services/financial-literacy-2021-legislation.]  [192:  Kanako Iwanaga et al., “Evaluating the Effect of Work Incentives Benefits Counseling on Employment Outcomes of Transition-Age and Young Adult Supplemental Security Income Recipients with Intellectual Disabilities: A Case Control Study,” Journal of Occupational Rehabilitation 31, no. 3 (2021): 581–591, https://doi.org/10.1007/s10926-020-09950-7. ]  [193:  National Association of State Legislatures, “Financial Literacy 2021 Legislation,” December 20, 2021, https://www.ncsl.org/financial-services/financial-literacy-2021-legislation.] 

Michigan H.B. 5190, enacted December 2021, requires graduating high school seniors to take financial literacy courses, beginning at grade eight. The legislation mandates the Michigan Department of Education (MDE) to develop curriculum and modifies the Michigan Merit Curriculum (MMC) to include 0.5 credits of a personal finance course.

Oregon H.B. 2266, signed August 2021, directs the State Business Development Department to study the efficacy of economic development methods, including technical assistance and financial literacy services to underserved borrowers.

Oregon H.B. 2702 requires school districts to provide education on home ownership and H.B. 3232 established financial literacy as a high diploma requirement and directs its Department of Education to establish content standards and state assessment for financial literacy.

Virginia H.B. 1905 added financial literacy and economic education objectives, for middle and high school levels, pertaining to the benefits, protections, and long-term financial sustainability associated with various employment arrangements including full-time and part-time independent contract work and gig work.

For transition-age youth with disabilities in particular, vocational rehabilitation counselors and transition coordinators are often unaware of financial savings programs such as ABLE and are therefore ill equipped to offer education on how to participate in these programs. Differences in the administration of VR programs as well as disparities in state implementation of the Individuals with Disabilities Education Act (IDEA) 504 and Individualized Education Programs (IEPs) preclude a uniform approach to financial education and outreach. In addition, there is consensus in the field that IEPs are not traditionally written in a way that supports transitioning to life as an independent adult, economically and otherwise. 

As of May 2023, 41 states had enacted or were in the process of passing legislation mandating financial literacy for high school students.[endnoteRef:194] However, for financial literacy programs to effectively meet the needs of transition-age youth with disabilities, curricula would need to provide specialized instruction on navigating benefits and financial incentive programs including ABLE, and other tax-advantaged savings trusts. This would also necessarily involve training for instructional staff, IEP teams, transition coaches, and vocational rehabilitation (VR) counselors. [194:  National Conference of State Legislatures, “Financial Literacy 2023 Legislation,” last updated May 2, 2023, https://www.ncsl.org/financial-services/financial-literacy-2023-legislation.] 

**RECOMMENDATIONS:**

The U.S. Department of the Treasury should fund research into the rate of ABLE account uptake nationally and measure knowledge or understanding of these accounts. States should subsequently implement strategic education and outreach campaigns to increase public awareness of and enrollment in ABLE programs. Campaigns would include enlisting current ABLE account holders or ABLE ambassadors to discuss their experiences with the program. These ambassadors would address important issues including navigating Social Security and other public benefits programs and dispel the myths and the fears associated with jeopardizing those benefits by enrolling in a “new” program such as ABLE.

States should fund education and training programs to advance opportunities for financial inclusion and economic opportunity through financial education, including retirement and investment education; small business and entrepreneurship navigator programs; and benefits education and increased access to financial services, including credit products and small business capital. This includes expanding financial training through state VR programs and other public service providers and partnering with financial establishments to reach a broader cross section of communities that include people with disabilities, particularly communities of color and transition-age youth. The U.S. Department of Education (ED) should fund National Technical Assistance Center (NTAC) programs to provide financial education as part of the academic enrichment opportunities for students with disabilities, and training to service providers and educators to increase understanding and uptake of savings programs.

## Administrative Burdens and Asset Limits

The PATH ACT (Section 303 of the Protecting Americans from Tax Hikes Act of 2015), amended Section 529A(b)(1) and removed the requirement that state ABLE programs can only be offered to residents of that state. Despite this, two state issues persist: (1) states continue to employ different approaches to administering ABLE programs, which yields disparate outcomes for individuals, and (2) little public education and awareness on ABLE accounts exist, which may lead to challenges with tax requirements.

State-established ABLE account limits range from $235,000 to $550,000. Notwithstanding, only $100,000 in contributions is exempt from the $2,000 SSI individual resource limit. Once ABLE accounts exceed $102,000, SSI cash benefits are suspended.[endnoteRef:195] These cash benefits help individuals maintain their standard of living. SSI is the second largest safety net program for people with disabilities, benefiting over 6.5 million in 2021 (federal and state payments).[endnoteRef:196] Losing SSI cash benefits can have dire consequences for individuals who already struggle to cope financially. For those who manage to maintain their social safety net benefits, the burden of record keeping is the responsibility of the account holder and/or employers. In 2019, proposed regulations confirmed that these individuals are solely responsible for ensuring that the requirements in section 529A(b)(2)(B)(ii) are met and for maintaining adequate records for that purpose. Though the Act allows ABLE programs to rely on self-certifications for contributions requirements, the reporting burden for account holders is significant. [195:  ABLE National Resource Center, “What Is ABLE?” 2023, https://www.ablenrc.org/employers/what-is-able/.]  [196:  U.S. Social Security Administration, “Annual Statistical Supplement 2022. Supplemental Security Income,” 2022, https://www.ssa.gov/policy/docs/statcomps/supplement/2022/7a.html.Notes: The statistics cited in this section refer exclusively to federal benefits. ] 

## ABLE and Retirement Savings

The ABLE to Work provision, passed as part of the Tax Cuts and Jobs Act of 2017, allows ABLE accounts owners who work and do not participate in an employer-sponsored retirement plan to contribute above the annual contribution limit.[endnoteRef:197] As of March 2022, ABLE to Work contributions exceeded $147 million.[endnoteRef:198] In 2023, contribution limits for ABLE to Work is $17,000 plus up to the lesser of their annual compensation or $13,590 (FPL for one-person household).[endnoteRef:199] Though rollovers and program-to-program transfers are not counted against ABLE annual contribution limits, an annual contribution of $30,590 may not be adequate for both retirement savings and qualified disability expenses, particularly for large asset purchases such as a car or home. Furthermore, a total asset disregard of $100,000 for an ABLE account plus the resource limit for SSI still applies, and this remains insufficient for retirement savings in the current economy. Of note, these provisions are set to expire at the end of 2025. [197:  ABLE National Resource Center, “Overview of ABLE to Work Act,” last updated January 2023, https://www.ablenrc.org/able-to-work-act/.]  [198:  “ABLE America 2022: Victories and Momentum for Change. An Update on Growth of ABLE Market,” AKF Consulting, April 2023, https://akfconsulting.com/wp-content/uploads/ABLE-Market-Report-2023-FINAL-as-of-2023-4-19-715pm.pdf.]  [199:  “2023 Instructions for Forms 1099-QA and 5498-QA,” U.S. Department of Treasury, Internal Revenue Services, 2023, https://www.irs.gov/pub/irs-pdf/i1099qa.pdf.] 

It is estimated that an additional six million people with disabilities could benefit from the adjustment in ABLE qualifying age of disability onset from before 26 years to before 46 years.[endnoteRef:200] This will take effect just about the same time as ABLE to Work contribution provisions are set to expire, which means a significant number of these individuals will not have the opportunity to take advantage of the program. In addition, current Saver’s Credit for ABLE to Work account owners is capped at a maximum of $2,000, including any distributions from the account. Allowing employer-match retirement contributions made via deferred contributions plans that do not count against asset and resource limits for social safety net programs or ABLE contribution limits would help improve the economic standing of working individuals. In addition, 529-Qualified Education Plan-to-ABLE rollover provisions should be made permanent (provisions are set to expire on January 1, 2026) and exemptions should be made for 529 rollovers from annual contribution limits to increase ABLE account deposits and decrease administrative burdens for families. [200:  National Disability Institute, “ABLE Age Adjustment Act,” November 9, 2022, https://www.nationaldisabilityinstitute.org/uncategorized/able-age-adjustment-act/.] 

Very few people who meet SSI’s resource criteria have substantial savings of any kind, including retirement savings.[endnoteRef:201] A positive consequence of eliminating SSI asset and resource limits altogether would be increased opportunities to work and earn, which increase the potential for low-income people and beneficiaries with disabilities who are farther from retirement age to save and acquire long-term assets such as purchasing their own home. [201:  Kathleen Romig, Luis Nunez, and Arloc Sherman, “The Case for Updating SSI Asset Limits,” Center on Budget and Policy Priorities, June 26, 2023, https://www.cbpp.org/research/social-security/the-case-for-updating-ssi-asset-limits#_ftn5.] 

**RECOMMENDATIONS:**

Congress and state governments should enact legislation to eliminate or modify asset caps and contribution limits across ABLE programs to enable higher levels of savings for immediate purchases, as well as for long-term savings and retirement. Make ABLE to Work permanent. Remove fees and penalties to allow ABLE account holders to maintain lower limits and balances. Update ABLE account contribution to disregard thresholds for SSI and other cash benefit programs. Allow higher employer-match contributions to ABLE accounts, and deferred compensation or donations to retirement plans by employers, comparable to a 403(b) or 401(k) plan. Provide a poverty incentive by increasing Saver’s Credit to a flat $2,000 for adjusted gross income below 300 percent FPL.

Congress should make 529-to-ABLE rollover provisions permanent (provisions are set to expire on January 1, 2026) and exempt 529 rollovers from annual contribution limits to increase ABLE account balances and decrease administrative burdens for families. 

## Special or Supplemental Needs Trust 

Special or Supplemental Needs Trusts are authorized and governed by the 1993 federal Omnibus Budget and Reconciliation Act (OBRA-93). SNTs do not have contribution limits, but are expensive to establish and complex to manage. Whereas ABLE accounts are useful for individuals whose public benefits offset their cost of living, SNTs are recommended for people with disabilities who are expected to live well into retirement, who have asset and wealth building goals that exceed the ABLE account holdings caps; who will have contributions in excess of applicable annual FPL-based contribution limits; or who will require extensive medical care that requires money in excess of public-funded disability benefits. Establishing a trust can range anywhere from $2,000 to $6,000, with additional costs to maintain it (up to 2% of the total funds).[endnoteRef:202] The unique financial and economic challenges faced by people with disabilities require clearly worded guidance for individuals and financial professionals to navigate ABLE accounts and SNT options. [202:  Annemarie Kelly and Lewis Hershey, “Coordinating an ABLE Account and a Special Needs Trust,” Journal of Financial Service Professionals 76, no.1 (January 2023): 47–57, https://www.emich.edu/cob/documents/jfsp-january2023-hershey.pdf. ] 

**RECOMMENDATION:** Congress and states should subsidize the cost of SNT planning by paying for and/or providing attorneys and trained financial service planners to support people with disabilities to establish trusts and ABLE accounts, and/or a combination of ABLE accounts, SNTs, and other savings programs.

## Individual Developmental Accounts

In 2021, only 13.5 percent of individuals below 100 percent FPL owned their own homes, and over 40 percent of that number lived in severely inadequate housing.[endnoteRef:203] In 2022, 9.5 percent of people with disabilities were self-employed (compared with 6.1 percent of people without disabilities).[endnoteRef:204] In 2021, 14.8 percent of households with members with disabilities were unbanked.[endnoteRef:205] IDAs support low-income individuals’ goals to save for home ownership, employment, small business ownership, or higher education and training, by matching their personal savings and offering financial counselling.  [203:  U.S. Census Bureau, “American Housing Survey, 2021 National Housing Quality,” 2021, https://www.census.gov/programs-surveys/ahs/data/interactive/ahstablecreator.html?s_areas=00000&s_year=2021&s_tablename=TABLE5&s_bygroup1=11&s_bygroup2=10&s_filtergroup1=2&s_filtergroup2=1.]  [204:  U.S. Bureau of Labor Statistics, “Persons with a Disability: Labor Force Characteristics – 2022,” 2022, https://www.bls.gov/news.release/pdf/disabl.pdf.]  [205:  “2021 FDIC National Survey of Unbanked and Underbanked Households – Executive Summary,” Federal Deposit Insurance Corporation, https://www.fdic.gov/analysis/household-survey/2021execsum.pdf.] 

The Assets for Independence Act (AFIA) – Public Law 105-285 (2015) IDA federal demonstrations grant program, authorized under the Assets for Independence Act of 1998, helped establish that low-income individuals can save if provided the means, incentives, and structure to do so. The IDA program saw a 52 percent increase in homeownership for individuals who were renting at enrollment, and a 53 percent increase in business ownership rates. In addition, there was a 25 percent reduction in material hardships experienced by program participants (utilities, health, housing), and fewer people used alternative financial services (47% decline) and high interest loans for major purchases (35% decline).[endnoteRef:206] Unfortunately, limited state funding has reduced the availability of IDAs in recent years. [206:  Caroline Ratcliffe et al., “From Savings to Ownership: Third-Year Impacts from the Assets for Independence Program Randomized Evaluation,” Urban Institute, November 15, 2019, https://www.urban.org/research/publication/savings-ownership-third-year-impacts-assets-independence-program-randomized-evaluation. ] 

IDA programs have proven successful on a small scale and have shown gains in assisting people to connect with financial services and engage in saving without jeopardizing Social Security disability benefits. The Administration for Children and Families (ACF) oversees the Temporary Assistance for Needy Families (TANF) and Demonstration Project IDA programs and matching money; the interest that goes into the IDA does not count as income or resources in determining SSI benefit eligibility.[endnoteRef:207] For people with disabilities who rely on Medicaid, however, asset limits are a challenge to IDA investments. This is because Section 415 of the AFIA statute permits states to count any funds deposited as well as accruing interest on those funds in determining eligibility for any federal or federally assisted needs-based program. Some state Medicaid agencies have opted not to count IDAs toward asset and resource limits. Though matching funds are disregarded for these purposes (e.g., deposits by a nonprofit organization, state, or local government), if there is no state plan in place, any income, including earnings deposited into an IDA account as well as any interest earned on these deposits, is still counted as income and/or a resource.[endnoteRef:208] [207:  U.S. Social Security Administration, “SSI Spotlight on Individual Development Accounts,” 2023, https://www.ssa.gov/ssi/spotlights/spot-individual-development.htm. ]  [208:  Centers for Medicare and Medicaid Services, “State Health Official Letter – IDAs under AFIA – 11/14/00 (medicaid.gov),” November 14, 2000, https://www.medicaid.gov/federal-policy-guidance/downloads/sho111400.pdf.] 

## Case Highlight: IDA Demonstration Randomized Evaluations

The Albuquerque, New Mexico Family Opportunity Act of 2006 provided $1.5 million to support asset building opportunities for low-income residents. The program is administered through the New Mexico Assets Consortium. IDA members are required to complete financial education. To date, the program has supported 1,463 families with $8.75 million in new savings deposits, 606 new and expanded local businesses, 330 homes with $57 million in new mortgages, 527 college degrees, and $5.1 million in increased earning potential per year.[endnoteRef:209] The Prosperity Kids Savings Initiative also supported families to open Child Savings Accounts (CSAs) and amass emergency savings with a secure line of credit, and provided financial capability and leadership education for children. [209:  “The Impact of IDAs in New Mexico,” Prosperity Works, accessed September 20, 2022, https://www.prosperityworks.net/impact.html.] 

**RECOMMENDATION:** The U.S. Department of the Treasury should commission research focused on understanding how asset-building programs such IDA and ABLE interact with, complement, and compare with other programs that would build valuable knowledge for policymakers and practitioners seeking to provide the most effective and efficient support for families with low incomes. Build rigorous evidence on newer innovations in incentivizing and supporting saving for families with low incomes. States should fund additional IDA pilot projects that allow 1-to-1 savings matching for low-income ABLE account holders for the specific purchase of homes, personal vehicles, funding for business capital, post-secondary education or training, or debt reduction. Support ABLE-IDA programs with 529A exemptions, benefits, and exclusions.

## Alternative Supports for Asset and Wealth Building

Establishing savings accounts and engaging in financial behaviors that support asset and wealth building are important to establishing economic independence for people with disabilities. Additional considerations to support wealth building opportunities for people with disabilities who live at or below the poverty threshold include tax code adjustments that would assist with the extra cost of living with a disability, guaranteed basic (GBI) income programs, and economic self-sufficiency programs for transition-age youth with disabilities.

## Tax Code Adjustments

A notable investment in preventative health care would involve adjustments in the tax code that help stem the extra cost of living with a disability. The high out-of-pocket cost for certain medical care means that many people with disabilities are unable to participate in basic wealth building activities, such as saving, saving for retirement, or purchasing a home. Current tax codes allow certain deductions that enable these individuals to better manage the extra costs associated with living with a disability. Pre-2010 deduction limits were set at 10 percent and were temporarily adjusted to 7.5 percent in 2010 and subsequently renewed in 2017 (Tax Cut and Jobs Act of 2017) and 2019 (Certainty and Disaster Relief Act of 2019). As of December 2020, however, the deduction limits were reset to 10 percent for tax years beginning before January 1, 2021.[endnoteRef:210] [210:  U.S. House of Representatives, “26 USC 213: Medical, Dental, etc., Expenses,” June 2013, House.gov, https://uscode.house.gov/view.xhtml?req=(title:26%20section:213%20edition:prelim)#sourcecredit. ] 

## Guaranteed Basic Income

While financial planning is necessary to address economic barriers and support wealth building, it cannot ensure economic independence. Economic independence involves empowering people with disabilities to manage their own resources and determine their own pathways to financial independence. Policies must support the growth of personal savings and provide the tools necessary for people with disabilities living in poverty to manage their money and resources. These policies include raising asset limits and removing limits on owning vehicles and property. State policy changes to TANF and SNAP, both means-tested programs, have demonstrated an increase in personal savings and a decrease in administrative costs without any meaningful change in the number of applicants for these programs.[endnoteRef:211] Cities such as Richmond and Alexandria in Virginia are experimenting with GBI pilot projects that support people with and without disabilities who are working, but not earning enough to “thrive.”[endnoteRef:212],[endnoteRef:213] Mayors of cities across the country have initiated guaranteed income programs that target low-income families; however, none is specifically targeted to support families with disabilities.[endnoteRef:214]  [211:  Caroline Ratcliffe et al., “Asset Limits, SNAP Participation, and Financial Stability,” Washington, DC: Urban Institute, June 2016.]  [212:  “Richmond Resilience Initiative,” City of Richmond, Virginia, 2021, https://www.rva.gov/community-wealth-building/richmond-resilience-initiative\.]  [213:  “Arise Guaranteed Income Pilot,” City of Alexandria, Virginia, accessed September 20, 2022, https://www.alexandriava.gov/ARISE.]  [214:  “The Stockton Economic Empowerment Demonstration (SEED),” Center for Guaranteed Income Research, accessed September 20, 2022, https://www.penncgir.org/research.] 

It is important to note that, depending on how the program is structured and who is funding it, income received under a GBI initiative may be countable as income (and if retained past the month of receipt, as a resource) under current SSI methodologies. States, however, have the option to disregard any such otherwise countable income. A pilot program for people with disabilities living in poverty to receive a GBI must not count the income under SSI methodologies, and it must be designed to protect the individual’s eligibility for Medicaid for the entire period of the pilot. An effective pilot program would also suspend any asset limits to allow the individual to attain assets and access resources needed to sustain wealth building after the program ends. 

The United States must provide a decent guaranteed annual income for all people regardless of [...] disability status. 

—NCD Listening Session Participant

**Alternative Paths to Economic Independence**

Youth face significant disincentives and access issues after high school. The proposed Transition to Economic Self-Sufficiency (TESS)[endnoteRef:215] scholarships are designed to support young people (18 to 24 years) who would qualify for SSI benefits and are not working to establish economic independence via education and employment. TESS scholarships are intended to increase the number of youth with disabilities who establish a career before age 30 by addressing some of the disincentives and access issues these individuals face. TESS is funded by private–public partnerships that leverage existing state programs.[endnoteRef:216] Benefits of the TESS program include education and a dedicated career counselor who assists each scholar to develop an individualized career plan (ICP), offers technical assistance to navigate their career, and identifies opportunities to gain work experience, get access to health care, and obtain long-term services and supports. [215:  David Stapleton, James Smith, and Tara Howe, “Transition to Economic Self-Sufficiency (TESS) Scholarships for Youth and Young Adults with Significant Disabilities,” U.S. Department of Labor, April 30, 2021, https://www.dol.gov/sites/dolgov/files/ODEP/pdf/SSI_Youth_Stapleton_Final_Proposal.pdf. ]  [216:  David Stapleton, James Smith, and Tara Howe, “Transition to Economic Self-Sufficiency (TESS) Scholarships for Youth and Young Adults with Significant Disabilities,” U.S. Department of Labor, April 30, 2021, https://www.dol.gov/sites/dolgov/files/ODEP/pdf/SSI_Youth_Stapleton_Final_Proposal.pdf.] 

Despite the value in program proposals such as TESS, asset limits prevent economic independence and opportunities for growth due to administrative burdens associated with means-tested benefits programs, limitations of ABLE to support long-term financial stability, the limited reach of IDAs and other state-sponsored programs that support savings and financial planning, and the complications of establishing and maintaining alternative tax-advantaged wealth building mechanisms, such as Special Needs Trusts.

**RECOMMENDATION:** State legislators and federal policy leaders should examine research on GBI pilots and fund additional pilot programs for guaranteed basic income targeted at people with disabilities who are receiving SSI and/or Medicaid and corresponding evaluations of these programs. These pilot programs must be designed in a way that protects the individual’s eligibility for Medicaid for the entire period of the pilot, suspends the SSI methodologies that would count GBI as income, and suspend asset limits to allow the individual to attain assets and access resources needed to sustain wealth building after the program ends.

# Recommendations

**SSI/Health:**

Congress should eliminate or index earned income limits, asset and resource limits for Medicaid and Supplemental Security Income to inflation rates to ensure that people with disabilities benefit from earnings increases without losing important benefits. Simultaneously, Congress should repeal Section 14(c) of the Fair Labor Standards Act permitting commensurate (subminimum) wages. 

The Centers for Medicare and Medicaid Services should work with the U.S. Department of Health and Human Services (DHHS), Federal Bureau of Prisons (BOP), and state departments of corrections to support economic independence for vulnerable populations with disabilities and those living at various intersections of marginalized identity (including poverty, gender, race/ethnicity, and sexual orientation) and those more likely to experience incarceration. Collaborations could include ensuring expedited reinstatement of benefits through agreements between agencies that administer benefits programs and corrections departments, including providing trained benefits navigators, allowing enhanced data sharing between public benefits systems, and offering corrections and state-funded pre-release programs. Additionally, the BOP and state corrections departments should regularly assess needs and establish connections with community providers, and state agencies and direct service providers should offer Medicaid-covered services to address unique community reintegration needs post-incarceration.

Congress should eliminate or modify Supplemental Security Income asset and resource rules, including allowing debts to counterbalance countable resources in determining program eligibility. Reduce the reporting burden for applicants and beneficiaries, and update overpayment waiver rules so they are less punitive and easier to navigate. Implement No Wrong Door (NWD) programs nationwide to facilitate the integration of social safety net program application and navigation processes.

Congress should amend the Affordable Care Act Section 1557, including the removal of asset and resource limits for Medicaid and Medicaid Buy-In (MBI) programs. Remove Medicaid asset limits, age limits, and marriage penalties to simplify the benefits process and facilitate economic independence for people with disabilities. Additional asset limit reforms to Medicaid programs should include allowing scalable premium contributions based on income, and funding further research into non-SSI pathways for Medicaid eligibility.

Congress should direct CMS to issue guidance on the range of options available for states to offer coverage to MBI for workers with disabilities. CMS should revise the State Plan Amendment Template (SPA) to clarify state options for adopting program flexibilities under current law.

Congress should authorize funding for CMS and states to improve outreach, assessment, and interagency coordination. This should include funding for CMS to establish a national technical assistance center to provide ongoing support to states and collaborate with the Social Security Administration (SSA) and other agencies to conduct outreach to beneficiaries and provide benefits counseling. Additionally, Congress should direct CMS to conduct data analysis and research to understand and improve health care and health insurance programs.

Congress should enact legislation for permanent continuous enrollment for Medicaid for individuals medically determined to have a lifelong disability, and for automatic enrollment of SSI beneficiaries in Medicaid. CMS should support states to provide continuous Medicaid enrollment and to work to permanently implement policies and processes that reduce burdens, such as using existing data sources to verify income, allowing self-attestation for asset verification, and minimizing the frequency of redeterminations.

Congress should instruct the U.S. Department of Commerce to establish and maintain comprehensive data collection on the economic standing of people with disabilities. Improve the collection, analysis, and interpretation of data on the lived experiences of people with intersecting identities across national data sets, including net worth indicators. Establish measures of accountability, including indicators of success for people being served by various programs and comprehensive data on unwinding of state health care programs. Fund research into the funding mechanisms and how various appropriations are being expended. 

CMS should increase funding levels for Medicaid home and community-based services (HCBS) and remove the institutional bias necessitating HCBS to be provided as a “waiver” of the institutional setting requirement for long-term services and supports (LTSS). Require automatic eligibility screening of HCBS waivers for all Medicaid recipients to reduce the number of people on waiting lists and increase access to critical services that allow individuals to move and work across state lines.

States should fund the expansion of health and medical provider networks, including the direct care workforce, by providing incentives for participation in disability services networks and integrated health care systems.

**Employment:**

Federal Workplace Innovation Opportunity Act (WIOA) funding should support the U.S. Departments of Labor and Education to conduct a comprehensive review of state plans, determine strategies that may be evaluated and replicated, and fund evaluation of promising state strategies. Establish accountability metrics for serving people with disabilities across all agencies, not just vocational rehabilitation. This should include a comprehensive review of changes across state plans and an evaluation of the impact of those plans to determine in what ways and which strategies have been most effective in increasing coordination and collaboration, and how those changes have led to improved outcomes and for which participants.

State vocational rehabilitation (VR) agencies should establish data-sharing agreements as part of their memoranda of understanding (MOUs) and, with data security procedures in place, establish databases that communicate common data elements with core WIOA partners. Existing state longitudinal data systems (SLDS) may serve as a starting point for developing shared data across agencies that house the six core WIOA partners.

The U.S. Department of Labor (DOL) should monitor and ensure that all American Job Centers (AJCs) are fully accessible to people with disabilities. DOL should move beyond compliance to build capacity among provider agencies including disability awareness, Americans with Disabilities Act of 1990 (ADA) rights and responsibilities, and effective practices to support employees with disabilities (new and returning). Provide training to workforce development providers on disability awareness and best practices for recruiting, hiring, and supporting workers with disabilities.

Federal WIOA Departments of Labor and Education should invest in rigorous research and evaluate practices that are successful in transitioning youth with disabilities into careers. Ensure that state departments of education and VR are collaborating with parents and youth (including out-of-school youth) on efforts to improve transition outcomes with an emphasis on building advocacy and self-advocacy skills in the workplace for students with disabilities, ensuring provision of benefits advisement services and financial planning.

State legislatures should enact Employment First legislation to support competitive integrated employment (CIE) for all residents. Conduct cost–benefit analyses that estimate the increase in taxable wages resulting from increased CIE.

The DOL and corresponding state departments should require a proportion of Registered Apprenticeship (RA) positions to be filled by people with disabilities commensurate with the percentage of working-age adults with disabilities in each state. DOL’s Office of Apprenticeship (OA) and State Apprenticeship Agencies (SAAs) should ensure that disability inclusion is part of the technical assistance provided to program sponsors and provide incentives to increase the proportion of people with disabilities in RAs.

State vocational rehabilitation agencies should reach out to employers through employer networks and Workforce Investment Boards/Workforce Development Boards to offer disability awareness and ADA training, to share resources for employers to better support employees, and to emphasize the value of hiring people with disabilities.

States should invest in national public service announcement (PSA) campaigns to change the conversation about people with disabilities as valuable members of society and contributors to their communities. Highlight workers with disabilities and help to normalize the conversation about disability in the U.S. workforce.

Federal agencies, including the Departments of Labor and Commerce, should create incentives for technology companies to engage with and hire people with disabilities in their research and development programs. Establish policies that require disability inclusion and analysis of artificial intelligence (AI) with a disability inclusion lens to prevent discrimination, and to enforce ethical use of AI in support of advancing an inclusive workforce.

The U.S. Department of Labor and the Social Security Administration should support the expansion or replication of stay-at-work/return-to work programs across states while improving these programs based on evidence about how they are used most effectively. Examine outcomes from the work of pilot states and disseminate findings with state agencies. Leverage national associations for workforce development, employers, and health care to disseminate findings and increase the reach of these programs to potential partners in states.

The Social Security Administration should engage researchers and stakeholders to design pilot programs that address barriers to work due to SSI benefits limitations and conduct formative assessments to generate approaches for changing the system.

State vocational rehabilitation agencies should expand financial training for people with disabilities through existing public service providers and partner with financial establishments to reach a broader cross section of communities that include people with disabilities, particularly communities of color. More funding should be allocated to Work Incentive Planning and Assistance to ensure access to timely benefits advisement services that encourage people with disabilities to work to their fullest abilities.

Congress should revise the definition of Substantial Gainful Activity to account for additional costs of living with a disability alongside the current national average wage index and geographically adjusted cost of living. Congress should also propose and pass legislation to expand SSA benefits offset for people with disabilities transitioning to substantial gainful activity with earnings above the income threshold to prevent abrupt termination of benefits and possibly sharp reductions in total income at the end of the trial work period.

**Asset Building and Wealth Protection:**

The U.S. Department of the Treasury should fund research into the rate of ABLE account uptake nationally and measure knowledge or understanding of these accounts. States should subsequently implement strategic education and outreach campaigns to increase public awareness of and increase enrollment in ABLE programs. Campaigns would include enlisting current ABLE account holders or ABLE ambassadors to discuss their experiences with the program. These ambassadors would address important issues including navigating Social Security and other public benefits programs and dispel the myths and the fears associated with jeopardizing those benefits by enrolling in a “new” program such as ABLE.

States should fund education and training programs to advance opportunities for financial inclusion and economic opportunity through financial education, including retirement and investment education; small business and entrepreneurship navigator programs; and benefits education and increased access to financial services, including credit products and small business capital. This includes expanding financial training through state VR programs and other public service providers and partnering with financial establishments to reach a broader cross section of communities that includes people with disabilities, particularly communities of color and transition-age youth. The U.S. ED should fund NTAC programs to provide financial education as part of the academic enrichment opportunities for students with disabilities, and training to service providers and educators to increase understanding and uptake of savings programs.

 State legislators and federal policy leaders should examine research on GBI pilots and fund additional pilot programs for guaranteed basic income targeted at people with disabilities who are receiving SSI and/or Medicaid and corresponding evaluations of these programs. These pilot programs must be designed in a way that protects the individual’s eligibility for Medicaid for the entire period of the pilot, suspends the SSI methodologies that would count GBI as income, and suspend asset limits to allow the individual to attain assets and access resources needed to sustain wealth building after the program ends.

Congress and state governments should enact legislation to eliminate or modify asset caps and contribution limits across ABLE programs to enable higher levels of savings for immediate purchases, as well as for long-term savings and retirement. Make ABLE to Work permanent. Remove fees and penalties to allow ABLE account holders to maintain lower limits and balances. Update ABLE account contributions to disregard thresholds for SSI and other cash benefit programs. Allow higher employer-match contributions to ABLE accounts, and deferred compensation or donations to retirement plans by employers, comparable to a 403(b) or 401(k) plan. Provide a poverty incentive by increasing Saver’s Credit to a flat $2,000 for adjusted gross income below 300 percent FPL.

Congress should make 529-to-ABLE rollover provisions permanent (provisions are set to expire on January 1, 2026) and exempt 529 rollovers from annual contribution limits to increase ABLE account balances and decrease administrative burdens for families. 

Congress and states should subsidize the cost of SNT planning by paying for and/or providing attorneys and trained financial service planners to support people with disabilities to establish trusts and ABLE accounts, and/or a combination of ABLE accounts, SNTs, and other savings programs.

The U.S. Department of the Treasury should commission research focused on understanding how asset-building programs such as IDAs and ABLE accounts interact with, complement, and compare with other programs, which would build valuable knowledge for policymakers and practitioners seeking to provide the most effective and efficient support for families with low incomes. Build rigorous evidence on newer innovations in incentivizing and supporting saving for families with low incomes. States should fund additional IDA pilot projects that allow 1-to-1 savings matching for low-income ABLE account holders, for the specific purchase of homes, personal vehicles, funding for business capital, post-secondary education or training, or debt reduction. Support ABLE-IDA programs with 529A exemptions, benefits, and exclusions.

# Appendices

## Appendix A: A Look Back at the National Council on Disability’s 25-year Americans with Disabilities Act of 1990 Anniversary Recommendations

The National Council on Disability (NCD) 2015 report included recommendations that addressed the performance of coordinated health care delivery systems and opportunities to expand and enhance employment for people with disabilities. This report discusses the impact of post-pandemic removal of financial supports and the surprising increase in employment for some people with disabilities through remote work in addition to recommendations to increase asset and wealth building through policy and systems change. The following is a view of the 2015 Progress Report Recommendations and movement toward achieving those goals seven years later. 

## Health Care 

NCD is unassailable in its vision for health equity as pivotal to economic independence for people with disabilities. The health and economic impact of COVID-19 pandemic reinforced the need for strong health care supports for vulnerable populations such as people living with disabilities, and those who live at the intersection of race/ethnicity, and poverty, and are especially vulnerable to financial shocks due to national economic fallout.

Nearly 660,000 people with disabilities remain on waiting lists for public social safety net programs. Benefits waiting lists have grown exponentially due to staffing shortages, lack of funding and myriad issues, 50 percent of whom are waiting for home and community-based services (HCBS) that support day-to-day living and employment.[endnoteRef:217] Unwinding of pandemic-era provisions leaves many vulnerable to benefits loss and increases the administrative burden for redetermination processes. In tandem, four million people are experiencing work disability due to long-COVID.[endnoteRef:218]  [217:  Alice Burns, Molly O’Malley Watts, and Meghana Ammula, “A Look at Waiting lists for Home and Community-Based Services from 2016 to 2021,” Kaiser Family Foundation, November 28, 2022, https://www.kff.org/medicaid/issue-brief/a-look-at-waiting-lists-for-home-and-community-based-services-from-2016-to-2021/.]  [218:  Katie Bach, “New Data Shows Long COVID Is Keeping as Many as 4 Million People Out of Work,” Brookings Institution, August 24, 2022, https://www.brookings.edu/research/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/. ] 

**2015: People with disabilities will realize health equity goals currently promised under the Americans with Disabilities Act of 1990 (ADA).**

**2023:** Tax code deductions are beneficial for people with disabilities. However, a return to pre-pandemic deduction limits of 10 percent, in a time when inflation continues to increase (consumer price index up 5.3 percent over June 2022 to June 2023),[endnoteRef:219] does not bode well for economic and health care equity and the extra cost of living with a disability. In addition, work requirements for Medicaid-funded services continue to erode people’s ability to participate in competitive integrated employment (CIE) and maintain critical health care benefits. Work remains for the Centers for Medicare and Medicaid Services (CMS) and states to do to simplify the application and verification processes, including automatic qualification and enrollment of Supplemental Security Income (SSI) beneficiaries for Medicaid; as well as in providing for automatic exemptions for work requirements for people with disabilities. [219:  U.S. Bureau of Labor Statistics, “Schedule of Releases for the Consumer Price Index,” June 13, 2023, https://www.bls.gov/schedule/news_release/cpi.htm.] 

**2015: The holistic needs of people with disabilities will be an integral part of the health care delivery system.**

**2023:** Medicaid expansion and Medicaid Buy-In (MBI) have expanded care services for workers with disabilities in 41 states (including the District of Columbia).[endnoteRef:220] In states where Medicaid has not been expanded, however, individuals often face coverage gaps. Income limits vary by state and sliding scale premiums make programs less attractive than Section 1619(b) alternatives. In tandem, health care systems remain largely siloed and uncoordinated. Investment in systems coordination, data sharing, and health care training is needed. The current direct service provider shortage, particularly for the mental health and behavioral workforce,[endnoteRef:221] is detrimental to the well-being and workplace performance of people with disabilities. [220:  Kaiser Family Foundation, “Status of State Medicaid Expansion Decisions: Interactive Map,” May 24, 2023, https://www.kff.org/medicaid/issue-brief/status-of-state-medicaid-expansion-decisions-interactive-map/.]  [221:  Sophia Yager, “Supporting Workers with Disabilities by Addressing the Mental and Behavioral Health Workforce Shortage,” National Governors Association, October 13, 2022, https://www.nga.org/news/commentary/supporting-workers-with-disabilities-by-addressing-the-mental-and-behavioral-health-workforce-shortage/. ] 

**2015: People with disabilities will benefit from stronger consumer protections with health insurance and throughout the health care delivery process.**

**2023:** Though strides have been made to ensure preventative health care through health insurance reforms to cover preventative services, with no or little out-of-pocket costs, most of these are not tailored to meet the unique health care needs of people with disabilities. Part of the reason for this ongoing issue involves the lack of investment in data systems that capture the health and economic standing of people with disabilities. Coordinating health care systems, in addition to developing assessment models and tools that capture the lived realities of people with disabilities, is needed to establish the real extent of their needs and gaps in current programs and services and to measure the financial impact of exclusion and lack of access to effective health care and economic participation.

## Employment 

NCD remains determined in its vision for equal opportunities for fully integrated employment leading to increased financial independence for people with disabilities. As of May 2023, the employment-to-population ratio for people with disabilities was 36.9 percent compared with 75.0 percent for people without disabilities.[endnoteRef:222] Labor force participation rates are similarly disparate, with half the rate of people with disabilities actively seeking work compared with those without disabilities (40.2% and 77.6%, respectively).[endnoteRef:223] Employment for people with disabilities reached its highest rate as the COVID-19 pandemic receded, yet these rates remain far too low. High rates of unemployment and underemployment of people with disabilities are a reflection of the work that remains to shift perceptions and increase opportunities to engage a willing and able section of the workforce. The national focus on diversity, equity, and inclusion is laudable, but often misses the mark by leaving out the inclusion of people with disabilities. The following examples present an update to NCD’s 2015 vision for the future in the area of employment. Seven years later, more action is needed to attain this vision. [222:  Institute on Disability, “nTIDE May 2023 Jobs Report: Job Numbers Rebound Bringing People with Disabilities Close to Previous High In Employment,” Center for Research on Disability, University of New Hampshire, and Kessler Foundation, June 2, 2023, https://www.researchondisability.org/season-8-episode-6-622023#ntidereport. ]  [223:  Institute on Disability, “nTIDE May 2023 Jobs Report: Job Numbers Rebound Bringing People with Disabilities Close to Previous High In Employment,” Center for Research on Disability, University of New Hampshire, and Kessler Foundation, June 2, 2023, https://www.researchondisability.org/season-8-episode-6-622023#ntidereport.] 

****

**2015: Work incentive programs for SSI/Social Security Disability Insurance (SSDI) beneficiaries, such as the Ticket-to-Work (TTW) program, will receive the support necessary to enhance their effectiveness.**

**2023:** TTW remains a useful but underutilized opportunity for people with disabilities who are seeking work or changes to their employment status. The program is not well known or well understood by workforce agencies or people with disabilities who might benefit from the opportunity to increase earnings without losing their benefits. Two strategies can help change current underutilization of TTW: first, significantly increase the cap on asset limits and tie them to changing economic indicators (or remove asset limits entirely); second, increase training for workforce agency staff across the country to increase awareness and deepen understanding of how and when to offer this option to job seekers with disabilities. 

**2015: The promise of the Workforce Innovation and Opportunity Act (WIOA) will be fulfilled, leading to greater collaboration among local, state, and federal employment services and enhanced opportunities for integrated, competitive employment for people with disabilities.**

**2023:**By 2017, state agencies were fully implementing WIOA requirements, including development of WIOA Unified State Plans. In some states, these plans have served as an opportunity to collaborate and share information about how to best serve job seekers, including people with disabilities. However, work remains for states to fully integrate services in a seamless way for the ultimate customer – people with a disability seeking employment or and other services to achieve a competitive, integrated employment outcome. Many states would benefit from the development of a shared intake form, shared data systems, and continued learning about each other’s services to better support residents. Staff across agencies would benefit from training and development to build or enhance their understanding of how to support job seekers with disabilities, and how to apply successful strategies to achieve CIE. 

**2015: Discrimination against people with disabilities during hiring, job assignment, promotion, and retention will end. These decisions will be based solely on the qualifications and performance of the individual.**

**2023:** While employment rates for people with disabilities increased toward the end of the COVID-19 pandemic, the disparity in job attainment rates between people with and without disabilities remains striking. A generation has grown up with the ADA yet employees with disabilities refrain from disclosing their disability in the workplace. Organizations like the Society for Human Resource Management (SHRM) have developed training for employers and hiring managers on their responsibilities under the law, and federally funded technical assistance centers provide information to employers to guide recruitment, hiring, retention, and promotion of people with disabilities. Society has not reached a tipping point in which disability inclusion at work is a norm. Along with greater social inclusion, people with disabilities must be seen in positions of leadership and recognized for their talents. This requires a comprehensive approach that impacts all levels of society; government has a role to play in leading the way toward greater inclusion in policy and in practice. 

**2015: The subminimum wage provisions of the Fair Labor Standards Act of 1938 (FLSA) will be eliminated, guaranteeing competitive wages for all people with disabilities.**

**2023:** As described in NCD’s 2020 report *Policies from the Past in a Modern Era: The Unintended Consequences of the AbilityOne Program & Section 14(c)*, and its earlier 2012 report, *Subminimum Wage and Supported Employment*, subminimum wage and sheltered workshops are relics of the past. The FLSA should be revised to end the practice of subminimum wage employment. Funds should be dedicated to assisting both employers and employees with the transition to CIE as smoothly and quickly as possible. More than a dozen states have already removed or acted to phase out 14(c) waivers, and there is a trend away from subminimum wage employment; the federal government should follow suit. Ending this practice is not sufficient, however, to transition people with complex disabilities into CIE—direct services providers in State Vocational Rehabilitation Agencies (SVRAs) require ongoing training to work with consumers and their families to shift expectations and provide wraparound supports to achieve the employment goals of individuals. 

**2015: Workplace accessibility, reasonable accommodations will be extended to people with disabilities who work remotely.**

**2023:** The unintended “remote work experiment” that occurred during the COVID-19 pandemic is credited at least partially with the increase in employment for some people with disabilities. Employers including federal and state governments should remain flexible with offering remote work options to all employees, which will help to normalize remote work and provide flexibility to current and potential workers with disabilities. Remote work is a reasonable accommodation and allows people who become disabled while working to continue with little interruption when remote work is an option. The nation learned during the pandemic that providing home workspaces was affordable even without tax credits. However, the NCD recommendation to offer tax credits to employers to reduce the cost of modifications in home offices may support the continued use of remote work across industries. 

**2015: Employers will become partners in disability employment, working in collaboration with the individual, support providers, disability advocacy groups, and state agencies to develop competitive employment opportunities for all people with disabilities.**

**2023:** Engaging employers in the valuable hiring and promotion of people with disabilities continues to be a challenge for workforce providers across the country. Employers focus on their bottom line and profits, and they adhere to legal requirements to meet compliance requirements. There has been a shift in many workplaces toward diversity, equity, and inclusion (DEI) initiatives that include employees with disabilities to raise awareness, celebrate diversity, and identify potential challenges to success in the workplace. Research has pointed to the lack of people with disabilities in management roles—managers are key to influencing and implementing organizational vision and they have decision making authority in hiring and promoting staff.[endnoteRef:224] In 2021, the U.S. Department of Education, Rehabilitation Services Administration (RSA) awarded nine demonstration program grants to SVRAs to innovate services and improve advanced employment outcomes for people with disabilities.[endnoteRef:225] More efforts are needed at the federal, state, and local levels to create leadership opportunities for people with disabilities within their agencies and to highlight existing business owners and organizational leaders with disabilities across industries. Additionally, the U.S. Department of Labor should require that state and local Workforce Development Boards include people with disabilities.  [224:  Michelle Yin, Dina Shaewitz, and Mahlet Megra, “Leading the Way or Falling Behind? What the Data Tell Us About Disability Pay Equity and Opportunity in Boston and Other Top Metropolitan Areas,” Washington, DC: American Institutes for Research and Institute for Educational Leadership, July 2020.]  [225:  U.S. Rehabilitation Services Administration, “Disability Innovation Fund – Career Advancement,” U.S. Department of Education, https://rsa.ed.gov/about/programs/disability-innovation-fund-career-advancement-initiative-model-demonstration-project.] 

# Appendix B: Methodology

Research activities included three (3) virtual listening sessions with individuals across the national disability community and a rapid systematic review methodology, employing the Cochrane Rapid Review (RR) method was used to examine a sample of health care, Supplemental Security Income (SSI), employment, and associated asset limit policies at federal and state levels (sample states were the Commonwealth of Massachusetts, Michigan, Mississippi, Oregon, and the Commonwealth of Virginia). Reflexive thematic analysis was applied to listening session data transcripts and to the review of the policy documents.

Three (3) virtual listening session were hosted with individuals across the national disability community, including policymakers, service providers, people with disabilities and family members of people with disabilities, youth with disabilities, and small business owners and self-employed people with disabilities. Three (3) stakeholder groupings participated in separate sessions: (1) policymakers and advocates at the federal and state levels, (2) service providers and advocates, and (3) people with disabilities, including family members and transitioning youth. Listening session participants engaged in open dialogue regarding the relevant factors related to the structural and systemic barriers associated with the cycle of dependency on social safety net programs, as well as the policy and other barriers to economic security for people with disabilities. Sessions were audio recorded, and data transcribed and analyzed via reflexive thematic qualitative analysis. Reflexive thematic analysis is appropriate for understanding the lived experiences, thoughts, and behaviors of participants across data sets, through a deductive six (6) step process.[endnoteRef:226] Themes identified in research literature helped frame the thematic inquiry and helped illuminate the context of participants’ experiences. Two independent researchers coded and analyzed the data using NVivo data analysis software. Listening session findings framed the policy analysis. [226:  Michelle Kiger and Lara Varpio, “Thematic Analysis of Qualitative Data: AMEE Guide No. 131,” Medical Teacher 42, no. 8 (August 2020): 846–854, https://doi.org/10.1080/0142159X.2020.1755030.] 

In lieu of a systematic review, this study employed a Rapid Systematic Review using the RR method to streamline policy data and produce findings in a resource-efficient manner.[endnoteRef:227] Studies and data were identified via predetermined inclusion criteria. Findings were synthesized and presented in a descriptive summary format, supported by literature consensus, along with an overview of select quantitative measures that best illuminate the problem of dependency on asset limited safety net income for people with disabilities. [227:  Chantelle Garritty et al., “Cochrane Rapid Reviews Methods Group Offers Evidence-Informed Guidance to Conduct Rapid Reviews,” Journal of Clinical Epidemiology 130 (2021): 13–22, https://doi.org/10.1016/j.jclinepi.2020.10.007. ] 

The policy review includes a look at state examples across five state heath and employment policies, along with recommendations from the National Council on Disability 2015 Report and Recommendations. A systematic review protocol was completed, delineated by search methods, types of studies, types of participants, types of articles, types of comparisons, outcome measures, and research sources. Policies were identified based on criteria outlined in Table A. The RR employed reflexive thematic analysis of policy documents via inductive coding and with the assistance of NVivo qualitative data analysis software.

Table A. Policy Review Inclusion and Exclusion Criteria

Five states were identified for the case sample review—Massachusetts, Mississippi, Michigan, Oregon, and Virginia. States were selected based on diverse criteria including the following: large Medicaid program or beneficiary contingent; reports on Asset Limited, Income Constrained, Employed (ALICE) representation available for 2020 or later; geographic spread of Northeast, South, Southwest, West, and Midwest; high disability (upwards of 13%, which is the national average) and high poverty populations (upwards of 17% of people with disabilities that are below 100% of the federal poverty level [FPL]); one state (Mississippi) that has definitively rejected Medicaid expansion; states determine Medicaid eligibility using 1634 (uses SSI criteria used to determine categorical eligibility); one state that does participate in the “medically needy” program for the aged, blind, and people with disabilities; [endnoteRef:228] one 209(b) state[endnoteRef:229] (Virginia); one SSI Criteria State [endnoteRef:230] (Oregon); and state(s) with progressive safety net program policies (such as Massachusetts). [228:  U.S. Social Security Administration, “Programs Operations Manual System: SI 01715.010 – Medicaid and the Supplemental Security Income (SSI) Program – 10/02/2017,” last updated August 2, 2016, https://secure.ssa.gov/poms.nsf/lnx/0501715020.]  [229:  U.S. Social Security Administration, “Programs Operations Manual System: SI 01715.010 – Medicaid and the Supplemental Security Income (SSI) Program – 10/02/2017,” last updated August 2, 2016, https://secure.ssa.gov/poms.nsf/lnx/0501715020.]  [230:  U.S. Social Security Administration, “Programs Operations Manual System: SI 01715.010 – Medicaid and the Supplemental Security Income (SSI) Program – 10/02/2017,” last updated August 2, 2016, https://secure.ssa.gov/poms.nsf/lnx/0501715020.] 

Table B. Disability Population and Poverty Levels Across Sample States

Source: US Census Bureau, American Community Survey, 2021 1-Year Estimates – Tables S1810 and S1811.

Table C. Medicaid Enrollment and Eligibility Criteria Across Sample States

Source: U.S. Centers for Medicare and Medicaid Services, Medicaid & CHIP: Monthly Application and Eligibility Reports, last updated November 28, 2022.

+ Figures represent total Medicaid and Children’s Health Insurance Program (CHIP) enrollment as of August 2022.

Source: *MACStats Medicaid and CHIP Databook 2021*. “State eligibility and poverty level represents levels as a percentage of FPL for People over Age 65 and People with Disabilities.:

# Appendix C: Agenda and Attendance for Virtual Stakeholder Meeting

The Relationship Between Social SafetyNet Program Asset Limits and Economic Independence for People with Disabilities

Virtual Listening Sessions Hosted by the National Disability Institute

Funded by the National Council on Disability

Agenda

Opening and Introductions (20 minutes)

1. Introductions (6 minutes)

1. National Council on Disability introduction to the study goals and background (3 minutes)

1. National Disability Institute introduction to the research team

1. Presentation of the report and session overview and group discussion goals (2 minutes)

i.	Research questions, methods, and report timeline

ii.	Policy areas of focus and discussion

1. Announcements and discussion protocols

1. Listening Session poll of brief demographic questions (5 minutes)

1. Instructions on how to respond within breakout rooms, including alternative response formats; and recording advisory

Breakout Room Discussions (1 hour)

1. Introductions within breakout rooms

8. Obtaining feedback on key aspects of the study

a.	How current asset limits for social/public safety net programs for health and employment (such as Medicaid, Supplemental Security Income [SSI]) support or prevent economic independence for people with disabilities

b.	How the Workforce Innovation and Opportunity Act is being fulfilled to support competitive integrated employment and economic independence for people with disabilities

c.	How income and resource limit policies impact asset and wealth protection for people with disabilities 

d.	Recommendations for asset limit reform at federal and state levels

Post-session directives, thanks, instructions, and next steps for the study and report (3 minutes)

Attendance: All three sessions were hosted at 2:30 p.m. to 4:00 p.m. EST

# Appendix D: Discussion Guide for Policymakers and Advocates 

Session #1: Thursday, March 2, 2023 | 2:30 p.m. to 4:00 p.m. EST

Discussion Questions*

Safety Net Program Asset Limits 

1. What does economic independence mean for people living with disabilities?

How have social safety policies impacted the economic independence of people with disabilities? 

Are asset limits still necessary for the proper functioning of social/ public safety net programs such as Medicaid and Supplemental Security Income (SSI)? If yes, why? If not, why not?

What are some examples in your state or federal demonstrations where revised asset limits have improved financial outcomes for people with disabilities?

Health Care 

The Medicaid Buy-In program allows workers with disabilities access to Medicaid community-based services not available through other insurers. Workers with disabilities may enroll in Medicaid to supplement Medicare and/or private medical insurance. What policies and practices have you found at the state or local level that have led to improved health, employment, and financial outcomes for people with disabilities? (e.g., Medicaid/ Medicaid Buy-in and home and community-based services [HCBS] Waivers)

Section 1557 of the Affordable Care Act (ACA) is a nondiscrimination provision that prohibits discrimination based on disability and has provisions for financial assistance and debt collection policies to help people manage their medical cost obligations. How have ACA and other federal consumer protection policies impacted health and financial outcomes for people with disabilities? (e.g., prohibiting discrimination in the health care space, alleviating medical debt, providing protections for medical insurance) 

a.	What are your recommendations for expanding these policies to meet the needs of individuals for whom coverage is currently unavailable or unaffordable? 

Employment**

The Workforce Innovation and Opportunity Act (WIOA) created greater integration of services that specifically support people with disabilities (including youth and adults) to enter competitive integrated employment (CIE) or to return to work after acquiring a disability. How has the WIOA been effective in helping people with disabilities acquire and maintain competitive integrated employment? (e.g., via American Job Center, Employment First, job coaching/counselling, benefits coaching/ counselling, workplace accessibility and accommodations and individual tax credits)

a.	Where has WIOA failed to sufficiently support CIE and stay at work/return to work outcomes? 

b.	What recommendations do you have to improve competitive integrated employment outcomes? 

Stay-at-work/return-to-work programs succeed by returning injured and ill workers to productive work as soon as medically possible during their recovery process and often provide interim transition work and accommodations as necessary. What policies and practices have you found at the state or local level that have led to improved outcomes for stay-at-work/return-to-work?

Asset and Wealth Protection

There are several asset and wealth protection policies and initiatives that have been implemented to help people with disabilities build wealth and assets while maintaining employment and public benefits. (These include supplemental needs trusts, Achieving a Better Life Experience (ABLE)/ABLE Age Adjustment Act and associated tax-protected ABLE accounts, individual development accounts [IDAs], etc.) How have asset and wealth protection policies been effective in helping people with disabilities and their families (including caretakers) establish and maintain assets? (e.g., savings and retirement, homeownership, small-business ownership)

a.	What polices have been ineffective in protecting assets and wealth for people with disabilities (e.g., Spend-down policies, income restrictions)?

Recommendations

In the context of promoting economic independence, what are your recommendations for policy reforms that would best support greater levels of financial inclusion for people with disabilities? (e.g., greater access to credit, retirement products, and small business/self-employment loans, programs, and opportunities)

**Variations of these questions were discussed across sessions, accommodating differences in language requirements, skill level, and experiences across the stakeholder segments.*

# Endnotes

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