The Impact of the 

Affordable Care Act 

on People with 

Disabilities:

A 2015 Status Report

National Council on Disability

January 26, 2016
Letter of Transmittal

January 26, 2016

President Barack Obama

The White House

1600 Pennsylvania Avenue, NW

Washington, DC 20500

Dear Mr. President:

The National Council on Disability (NCD) is pleased to submit the enclosed second report in a 

series of three regarding implementation of the Patient Protection and Affordable Care Act (ACA) of 

2008. The title of this report is The Impact of the Affordable Care Act on People with Disabilities: A 

2015 Status Report.

NCD is an independent federal agency, composed of nine members appointed by the President 

and the U.S. Congress. The purpose of NCD is to promote policies, programs, practices, and 

procedures that guarantee equal opportunity for all individuals with disabilities and to empower 

individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion 

and integration into all aspects of society.

This second report seeks to explore how changes to the country’s health care system are affecting 

people with disabilities by (1) examining and analyzing available literature, (2) conducting qualitative 

interviews of state-based disability rights leaders in ten states with diverse ACA implementation 

decisions, and (3) assembling summary tables of selected state policy choices. This report gathers 

and analyzes data that:

• Provides insight about the experiences of people living with a disability and/or closely associated with diverse functional categories of disability;

• Describes what we currently know about the impact of the ACA on people with disabilities 

based on available literature and qualitative interviews of disability leaders;

• Formulates recommendations for future research and tracking of effective results where 

appropriate; and

• Presents 50-state summary tables of information for stakeholders regarding:

❍ Medicaid Alternative Benefits in states with expanded eligibility;

❍ State eligible health benefits decisions about and coverage of habilitative services; and

❍ Eligible health benefits benchmark coverage of rehabilitative services and durable medical equipment.

For people with disabilities and their families, the quality of health care, risks, and even some 

unintended consequences of ineffective planning, programs, processes, and practices reach 

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.

1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004

202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov
beyond meeting medical needs, such as being empowered to pursue one’s training and/or employment 

goals. Appropriate health care for these individuals continues to be linked to access, discrimination, 

inclusion, disparities, employment impacts, and long-term services and supports. As we embark 

on a new calendar year, NCD is grateful for the opportunity to share this early snapshot on the 

implementation of the ACA.

Sincerely,

Clyde Terry

Chair

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate, the Speaker of the U.S. 

House of Representatives, and the Director of the Office of Management and Budget.)
National Council on Disability Members and Staff

Members

Clyde Terry, Chair

Katherine D. Seelman, Co-Vice Chair

Royal Walker, Jr., Co-Vice Chair

Gary Blumenthal

Bob Brown

Lt. Col. Daniel Gade

Janice Lehrer-Stein

Benro T. Ogunyipe

Neil Romano

Lynnae Ruttledge

Staff

Rebecca Cokley, Executive Director

Phoebe Ball, Legislative Affairs Specialist

Stacey S. Brown, Staff Assistant

Lawrence Carter-Long, Public Affairs Specialist

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Management Analyst

Geraldine-Drake Hawkins, Ph.D., Senior Policy Analyst

Amy Nicholas, Attorney Advisor

Anne Sommers, Director of Legislative Affairs & Outreach

Ana Torres-Davis, Attorney Advisor

Implementing the Affordable Care Act: A Roadmap for People with Disabilities
Acknowledgments

The National Council on Disability expresses appreciation to Stephan Lindner and Regan Considine 

from the Urban Institute as well as Melinda Davis, Ruth Rowland, and Margaret Spurlock from the 

Oregon Health and Science University (OHSU), who conducted the research and writing for this report. 

We also thank Stan Dorn, Pam Loprest, and Tim Waidmann of the Urban Institute for their comments 

on an earlier draft as well as Willi Horner-Johnson, Angela Weaver, and David Buckley of OHSU for their 

support in identifying key informants and conducting the interviews.

National Council on Disability
Acronym Glossary

ABA Applied behavioral analysis

ABP Medicaid alternative benefit plan

ACA Patient Protection and Affordable Care Act

ACO Accountable care organization

ACS American Community Survey

CDC Centers for Disease Control and Prevention

CFC Community First Choice

CMS Centers for Medicare and Medicaid Services

CPM Continuous passive motion

CPS ASEC Current Population Survey Annual Social and Economic Supplement

DME Durable medical equipment

EHB Essential health benefit

EHR Electronic health record

FPL Federal poverty level

HCBS Home- and community-based services

HIE Health information exchange

HIP Healthy Indiana Plan

HIT Health information technology

HRMS Health Reform Monitoring Survey

IDD Intellectual and developmental disabilities

IRB Institutional Review Board

LTSS Long-term services and supports

MEPS-HC Medical Expenditure Panel Survey–Household Component

MCOs Managed-care organizations

NHIS National Health Interview Survey

NORC National Opinion Research Center

PCO Primary care option

POWER Personal Wellness and Responsibility Account

QHP Qualified health plan

SIPP Survey of Income and Program Participation

SPA State plan amendment

SSDI Social Security Disability Insurance

SSI Supplemental Security Income

STS Sympathetic therapy stimulator

TENS Transcutaneous electrical nerve stimulation

TMJ Temporomandibular joint

T-MSIS Transformed Medicaid Statistical Information System

Implementing the Affordable Care Act: A Roadmap for People with Disabilities
National Council on Disability
Contents

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Chapter 1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Report Structure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Chapter 2. Literature Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Primary ACA Provisions for People with Disabilities . . . . . . . . . . . . . . . . .  1

Marketplaces and Medicaid Expansion . . . . . . . . . . . . . . . . . . . . . . . .  1

Long-Term Services and Supports: Selected Issues . . . . . . . . . . . . . .  1

Dependent Coverage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Chapter 3. Qualitative Research: Interviews with Key Informants from

the Disability Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Selection of States and Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Data Collection and Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Coverage Options . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Enrollment Processes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Benefits and Features of Newly Available Health Plans . . . . . . . . . . .  3

Postenrollment Access Barriers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Long-Term Services and Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Health System Reforms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Employment and Financial Impacts . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Engagement of People with Disabilities in Planning 

New Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Data Documenting the Experiences of People with Disabilities . . . .  4

Policy Recommendations Stemming from Key-Informant Interviews . . .  4

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 1
Chapter 4. Selected State Policy Choices Important for People with

Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Medicaid Expansion: Benefits for Low-Income Adults . . . . . . . . . . . . . . . .  4

Essential Health Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Chapter 5. Recommendations for Future Research . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Appendix Table 1. Medicaid Alternative Benefit Plans (ABPs). . . . . . . . . . 

Appendix Table 2. Essential Health Benefit (EHB) Coverage of

Habilitative Services and Devices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Appendix Table 3. Essential Health Benefit (EHB) Coverage of

Rehabilitative Services and Devices . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  7

Appendix Table 4. Essential Health Benefit (EHB) Coverage of

Durable Medical Equipment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  7

Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

2 National Council on Disability
Executive Summary

T

he Patient Protection and Affordable Care 

Act (ACA) is one of the most significant 

health-related pieces of legislation enacted 

in decades. The act is especially important to 

people with disabilities, who rely on a broad 

range of health care services and supports, and 

for whom the details of health coverage can have 

an immediate effect on employment options. This 

report analyzes what we know about the ACA’s 

impact on people with disabilities, using a formal 

literature review, interviews with key informants 

from disability organizations in ten diverse states, 

and a review of state policies involving key ACA 

provisions.

Literature review. Analyzing both peerreviewed published studies and unpublished 

studies from the “grey literature”—that is, 

information and research output produced by 

various type of organizations outside of academic 

publishing1

—we find little research showing how 

people with disabilities have been affected by the 

early stages of ACA implementation.2

 This lack of 

empirical evidence is partially because the most 

important ACA provisions were only recently 

implemented. Thus, public surveys, which are 

often made available with a considerable time 

lag, do not yet reflect most of these provisions. 

Moreover, most studies do not appear to identify 

people with disabilities as a unique subgroup 

warranting specific analysis.

A number of studies have examined the 

ACA’s dependent coverage provisions, which, 

starting in 2010, extended private coverage to 

dependents up to age 26. They found that young 

adults with disabilities and other young adults 

have experienced significant coverage gains 

because of this provision. Other studies showed 

that, starting in 2014, low- and moderate-income 

nonelderly adults, including both adults with 

chronic illnesses and other adults, experienced 

significant coverage gains. In some states and 

the District of Columbia, those gains resulted 

from Medicaid expansion to adults with incomes 

up to 138 percent of the federal poverty level. In 

all states and the District of Columbia, the gains 

resulted from subsidies for qualified health plans 

(QHPs) offered in health insurance Marketplaces 

combined with private insurance reforms, such 

as the prohibition of discrimination based on 

health status. Evaluations of the ACA’s provisions 

involving long-term services and supports (LTSS) 

are just getting underway, and preliminary 

results vary; some early findings indicate initial 

implementation challenges.

Interviews. We selected key informants from 

ten states across geographic regions that differed 

in terms of their Marketplace enrollment success 

as well as key ACA implementation decisions, 

such as type of Marketplace exchange system, 

(non)expansion of Medicaid, and adoption of 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 3
an LTSS provision. Interviewees were chosen 

to represent a broad range of disabilities and to 

offer insight into the experiences of people with 

disabilities with ACA implementation in their 

states.

New insurance affordability programs.

Interviewees almost universally described 

Medicaid as the “first resource” for people with 

disabilities because it provides benefits that 

are more comprehensive than those offered by 

private plans. According to the interviewees, 

expanded eligibility tended to serve adults with 

comparatively moderate disabilities. Whether 

the alternative benefit plans (ABPs) provided 

to newly eligible adults aligned with Medicaid 

benefits for other adults varied among states. In 

states that modeled ABPs on employer-based 

plans rather than on pre-ACA Medicaid coverage, 

interviewees reported service limitations that 

disadvantaged people with disabilities. Despite 

broad knowledge of ACA implementation, no 

interviewee was aware that newly eligible adults 

could transfer from ABPs to standard Medicaid 

benefits by demonstrating “medical frailty,” 

which suggests a gap in the information some 

states provide on coverage options. A number of 

interviewees expressed concerns that expanded 

Medicaid enrollment without an accompanying 

increase in the number of providers appeared 

to be limiting previous beneficiaries’ access to 

certain specialty providers.

The ACA’s subsidies for QHPs were helpful in 

reducing premium costs, according to informants. 

Despite those subsidies, high deductibles and 

other out-of-pocket cost-sharing (for example, 

prescription drugs) were access barriers to 

many people with disabilities, as were some 

QHPs’ limited provider networks. Many states’ 

decisions about essential health benefits (EHBs), 

apparently motivated by a desire to limit costs, 

excluded services that people with disabilities 

need. Some informants expressed concerns that 

the complexity of ACA implementation could let 

states and insurers avoid complying with federal 

legal requirements for EHBs.

Marketplace enrollment processes.

Interviewees described the enrollment process 

as complex and challenging for many people with 

disabilities, partially because some Marketplaces 

did not implement planned accessibility features 

as a result of budget constraints and other 

operational difficulties. Interviewees thought that 

Navigators, people trained to help consumers 

find health coverage options in the Marketplace, 

were helpful only when they had previous 

experience with health issues faced by people 

with disabilities. According to interviewees, 

many people with disabilities found it particularly 

hard to choose among available QHPs because 

the Marketplaces had limited information about 

important details of covered benefits and provider 

networks.

Long-term services and supports. With both 

demonstration projects that integrate Medicare 

and Medicaid coverage for dual eligibles and 

other uses of private managed-care plans to 

cover LTSS, key informants reported concerns 

about the plans’ incentives to limit services and 

lack of prior experience with LTSS. In states 

implementing the Community First Choice 

(CFC)3 option for Medicaid coverage of homeand community-based services (HCBS) for all 

eligible beneficiaries, informants expressed 

concerns about disruptions to previous 

arrangements that worked well for many people 

with disabilities. By contrast, informants in other 

states reported that disability organizations were 

advocating CFC implementation to address long 

4 National Council on Disability
waiting lists for HCBS offered through pre-ACA 

Medicaid waivers.

Employment and financial impacts. Though 

most interviewees did not perceive direct 

impacts of the ACA on people with disabilities’ 

employment prospects, some key informants 

asserted that access to coverage through the 

ACA decreased the pressure for people with 

disabilities to remain impoverished to qualify for 

Medicaid’s comprehensive benefits or to pursue a 

job solely for its health benefits. As a result, more 

people with disabilities could search for jobs that 

aligned with their skills. Community First Choice 

options can also be used to provide services that 

support an individual’s employment goals.4

State tables. Our summary of key state 

decisions involved (1) ABPs covered for newly 

eligible Medicaid adults and (2) state decisions 

about EHBs in the categories of habilitative 

services, rehabilitative services, and durable 

medical equipment. As of August 2015, 30 

states plus the District of Columbia had adopted 

legislation expanding their Medicaid program. 

Of these, 18 states plus the District of Columbia 

offered ABPs that were aligned with standard 

Medicaid benefits for adults; 11 states offered 

ABPs that were based on employer-based 

plans and that typically provide fewer benefits 

than standard Medicaid benefits; one state 

(Alaska) was scheduled to start its expansion 

September 1, 2015; and one state (Montana) was 

awaiting approval by the Federal Government.5

In terms of EHBs, many features of coverage 

did not vary significantly among states and the 

District of Columbia. Exceptions included autismrelated care and habilitative services. Habilitative 

services, which involve helping consumers 

keep, learn, or improve functions for daily living, 

is a newer benefit category for many private 

plans and is undergoing a lot of change. Major 

interstate differences included provider visit limits 

and included services. Rehabilitative services 

have been part of most commercial plans and 

have only been marginally affected by the ACA. 

Recent regulations establish a January 2017 due 

date after which state EHBs are barred from 

applying a single-visit limit to both habilitative and 

rehabilitative services; 11 states had not yet met 

this requirement by August 2015.

Recommendations for future research. On 

the basis of the above analysis, we make several 

recommendations for future research into the 

ACA’s effects on people with disabilities:

■ The most important near-term research goal 

involves ensuring that forthcoming surveybased research analyzes the coverage, 

access, and other effects of the ACA on 

people with disabilities, along with other 

important groups. Major national survey 

data will soon become available that show 

health coverage in 2014, the first year during 

which the ACA’s main provisions became 

effective. Both newly available data and 2014 

data already available under other national 

surveys contain information about people 

with disabilities.

■ Qualitative research involving focus 

groups and key-informant interviews could 

analyze the reasons that some people with 

disabilities have fared better than others in 

gaining improved coverage and access to 

health care. Such analysis could explore the 

relationship between state policy choices 

and health coverage and care of people with 

disabilities.

■ Similar qualitative research, combined 

with evaluation data, could analyze the 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 5
effects of expanded Medicaid managed 

care coverage of LTSS, including analyzing 

demonstration projects that integrate 

Medicare and Medicaid coverage for dual 

eligibles.

■ Researchers could analyze new sources 

of administrative data. Such administrative 

data include (1) information about a person’s 

disability status requested on national 

applications for QHP subsidies and (2) 

new, comprehensive Medicaid data that 

states and the District of Columbia are 

increasingly providing to the Centers for 

Medicare and Medicaid Services as part 

of the Transformed Medicaid Statistical 

Information System. Once all personally 

identifying information is removed, 

these administrative records could help 

researchers assess the coverage and care 

that QHPs and Medicaid furnish to people 

with disabilities.

6 National Council on Disability
Implementing the Affordable Care Act: A Roadmap for People with Disabilities 7
“[It impacts] every kid with a disability whose parents have a job—it’s 

huge. It gives them an option of not having to impoverish themselves 

immediately to get SSI.”—Interview Participant from Colorado [

8 National Council on Disability
Chapter 1. Introductio

Report Structure

We start this report by providing a 

topically organized overview of our 

findings; we then

■ summarize available literature that describes 

the impact of the Patient Protection and 

Affordable Care Act (ACA) on people with 

disabilities;

■ describe our qualitative interviews with key 

informants from the disability community in 

ten diverse states;

■ inventory and analyze key ACA 

implementation choices that states 

made; and

■ offer recommendations for future research 

to analyze the impact of the ACA on people 

with disabilities.

Overview

The ACA has the potential to deeply affect people 

with disabilities. Several provisions of the ACA 

stand out in their likely impact on the disability 

community:

■ The expansion of Medicaid eligibility to 

adults with incomes at or below 138 

percent of the federal poverty level (FPL), 

which went into effect in 2014 (States and 

the District of Columbia had the option 

to expand Medicaid as early as 2010, and 

some did.)6

■ Also starting in 2014: private insurance 

offerings through newly established 

health insurance Marketplaces (also 

called “exchanges”), supported by federal 

subsidies; marketwide prohibitions against 

insurance company discrimination; and 

essential benefit requirements that forbid 

certain overall limits on covered services

■ Beginning in 2010, options to improve 

Medicaid coverage of long-term services 

and support (LTSS), which include 

demonstration projects that integrate 

Medicare and Medicaid coverage for dually 

eligible individuals and the Community 

First Choice (CFC) option, which provides 

home- and community-based services 

(HCBS) to all Medicaid beneficiaries who 

qualify

■ Dependent coverage provisions, effective 

in 2010, that let young adults stay on their 

parents’ health insurance plans until age 26

The operation of these nationwide provisions 

is subject to implementation decisions by 

states (including the District of Columbia) and 

insurers. States can expand Medicaid and define 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 9
Medicaid services within federal parameters; as 

of August 2015, 30 states and DC have adopted 

such an expansion, 20 have not.7 Like most other 

forms of insurance, qualified health plans (QHPs) 

offered in Marketplaces need to cover essential 

health benefits (EHBs), but flexible federal 

guidelines have led to great variance between 

states and within some states, potentially leaving 

services important to people with disabilities 

uncovered.8 Thirteen states and DC run their own 

Marketplaces, ten states operate Marketplaces 

jointly with the Federal Government, and 

27 states have the Federal Government 

administer Marketplaces.9

This report synthesizes emerging evidence 

of the ACA’s impact on people with disabilities 

based on

■ a review of the available literature, both 

peer-reviewed and “grey”;

■ interviews with key informants from 

disability organizations in ten states with 

diverse ACA implementation approaches;10

and

■ a state-specific summary of selected 

implementation decisions involving 

Medicaid expansion and selected EHBs of 

particular interest to people with disabilities.

There is little published research addressing the 

impact of the ACA on consumers with health 

problems, much less those with disabilities. One 

contributing factor involves lengthy standard 

delays in the release of national survey data. For 

example, information about coverage in 2014, the 

first year to which the ACA’s central provisions 

applied, is not slated to become available until fall 

of 2015 for the two most widely used sources 

of health coverage data: the Current Population 

Survey Annual Social and Economic Supplement 

and the American Community Survey. One 

exception involves the ACA’s dependent coverage 

provisions, which became operative in 2010 

and that research suggests have significantly 

increased coverage for young adults with and 

without disabilities. Because of these data 

limitations, most of the findings discussed in this 

report are based on the perception of informants.

Medicaid expansion. Both interview results 

and available literature suggest that Medicaid 

expansion has helped people with disabilities. 

Informants described Medicaid as a “first 

resource” for people with disabilities, on 

the basis of benefits that are broader than 

coverage by private plans and go farther toward 

meeting the needs of people with disabilities. 

Evidence based on surveys, though scant, 

points toward important gains in coverage for 

people with disabilities because of the Medicaid 

expansion. One study found a stronger decrease 

Medicaid Expansion (as of 

August 2015)

■ 18 states plus the District of Columbia 

offered alternative benefit plans (ABPs) 

that were aligned with standard Medicaid 

benefits for adults;

■ 11 states offered ABPs that were based 

on employer-based plans and that typically 

provide fewer benefits than standard 

Medicaid benefits;

■ One state (Alaska) was scheduled to start its 

expansion September 1, 2015; and

■ One state (Montana) was awaiting approval 

by the Federal Government.

10 National Council on Disability
in the uninsured rate among chronically ill 

adults in Medicaid-expanding states versus 

nonexpanding-Medicaid states. According 

to another study, low-income people with 

health problems in Connecticut experienced 

the strongest uninsured rate decline of all 

demographic groups 

considered when 

the state expanded 

Medicaid early.

However, states 

expanding Medicaid 

provide newly eligible 

adults with an alternative 

benefit plan (ABP), 

which may not include 

all standard Medicaid 

benefits for adults. As 

of August 2015, 18 

states plus the District 

of Columbia offered 

ABPs that were aligned with standard Medicaid 

benefits for adults; 11 states offered ABPs that 

were based on employer-based plans and that 

typically provide fewer benefits than standard 

Medicaid benefits; one state (Alaska) was 

scheduled to start its expansion September 1, 

2015; and one state (Montana) was awaiting 

approval by the Federal Government.11 Informants 

from states that did not align their ABPs to 

their standard Medicaid benefits reported 

that service limitations result in benefits that 

are less favorable to people with disabilities. 

The ACA lets newly eligible adults who are 

“medically frail” switch from the ABP to standard 

Medicaid benefits for adults. However, no 

key informants were aware of this safeguard, 

suggesting that states may not have educated 

beneficiaries about this potentially important 

route for people with disabilities to obtain 

broader services. Some informants noted that 

increased demand for services resulting from 

expanded eligibility appeared to diminish access 

to some Medicaid specialty providers, such as 

those providing mental health care. According 

to informants, among 

people with disabilities, 

expanded eligibility 

mainly benefited 

those with moderate 

disabilities—individuals 

whose conditions did 

not meet the severity 

requirements for preACA disability-based 

Medicaid as well as 

those falling within 

the two-year waiting 

period before qualifying 

for disability-based 

Medicare. Some informants also mentioned as 

another advantage of the new eligibility category 

that its assets are not considered in qualifying 

for Medicaid, a situation that allows people with 

disabilities to accumulate resources and increase 

self-sufficiency.

Insurance reforms and EHBs. Informants 

noted the significant gains that people with 

disabilities received from the ACA’s elimination 

of preexisting condition exclusions and lifetime 

coverage limits. However, informants reported 

serious limitations with state EHB definitions that 

prevented people with disabilities from receiving 

necessary care, which in some cases were 

written to accommodate policymakers’ desires 

to control costs. Limitations of particular concern 

involved durable medical equipment (DME), 

habilitative and rehabilitative services, mental 

ACA lets newly eligible adults who 

are “medically frail” switch from 

the ABP to standard Medicaid 

benefits for adults. However, no

key informants were aware of 

this safeguard, suggesting that 

states may not have educated 

beneficiaries about this potentially 

important route for people with 

disabilities to obtain broader 

services

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 11
health care, and prescription drugs. Interviewees 

were also skeptical about state enforcement 

of applicable legal requirements, particularly as 

to coverage offered through federally facilitated 

Marketplaces.

Our analysis of EHBs in the 50 states and the 

District of Columbia suggests that, in terms of 

habilitative and rehabilitative care and DME, the 

broad parameters of covered benefits are similar 

across states, with some exceptions that involve 

habilitative services and autism care. Because 

rehabilitative services have been included in most 

commercial plans, they have been marginally 

affected by the ACA. However, habilitative care, 

which involves helping consumers keep, learn, 

or improve functions for daily living, is a newer 

benefit category for many private plans and 

is undergoing much change. Major interstate 

differences include which services are covered, 

such as maintenance therapy, and provider visit 

limits that vary among states from 20 to 90 visits 

a year. Recent regulations establish a January 

2017 due date after which state EHBs are 

barred from applying a single-visit limit to both 

habilitative and rehabilitative services; 11 states 

have not yet met this requirement.

Marketplace QHP offerings. Federal subsidies 

to purchase QHPs led to significant coverage 

gains. Among chronically ill adults in the income 

range qualifying for subsidies, the number 

without coverage fell 53 percent, according to 

one study.12 Key-informant interviews confirmed 

the importance of subsidies in making coverage 

more affordable. However, many informants 

reported that, despite subsidies, QHP costs were 

problematic for many people with disabilities. 

In particular, high deductibles and other out-ofpocket cost sharing have apparently reduced 

receipt of necessary services while imposing 

cost burdens on consumers with significant 

health care problems. Some informants 

described QHP provider networks as similar to 

networks in other Markets, sharing underlying 

limits in provider capacity. Other interviewed 

informants were concerned about narrow QHP 

networks that prevented people with disabilities 

from accessing necessary providers.

Marketplaces as enrollment portals.

Informants reported shortcomings in Marketplace 

accessibility to people with disabilities, which 

may have resulted from budget constraints 

and other initial operational challenges facing 

Marketplaces. Informants also expressed 

concerns about the limited training that 

Navigators received in meeting the needs of 

people with disabilities. These gaps were often 

filled by disability organizations that furnished 

assistance to people with disabilities. Harder 

to overcome were limitations in Marketplace 

information about features of QHPs that were 

particularly important to people with disabilities, 

such as the details of covered benefits and drug 

formularies. The federally facilitated Marketplace 

provided little or no information about Medicaid 

eligibility categories that serve some people with 

disabilities with incomes above 138 percent of 

the FPL, in the range of financial eligibility for 

QHP subsidies. However, informants reported 

an example of a state-based Marketplace that 

effectively provided information about these 

Medicaid eligibility categories, which offer people 

with disabilities more comprehensive services at 

significantly reduced cost.

Employment and financial impacts. Some 

informants noted that extended coverage 

decreased the pressure for people with 

disabilities to impoverish themselves to fall under 

Medicaid coverage or to pursue a job solely for 

12 National Council on Disability
its health benefits. As a result, more people with 

disabilities could search for jobs that aligned with 

their skills. Community First Choice options can 

also be used to provide services that support 

an individual’s employment goals (for example, 

Kennedy-Lizotte 2011).

LTSS. As of August 2014, 13 states had 

implemented demonstration projects that 

integrate Medicare and Medicaid services for 

people who are dually eligible; 10 of these 

states are using private, managed care plans. 

Both with these demonstration projects and 

other uses of private, 

managed care plans to 

cover LTSS, informants 

reported widespread 

concerns about state 

contracts with plans 

that lacked significant 

experience managing 

LTSS and incentives 

for plans to increase 

profits by limiting 

services. States 

with dual-eligibility 

demonstrations have evaluations underway, 

though they are far from completion. Preliminary 

results indicate some initial implementation 

challenges.

Seven states have implemented the CFC 

option by August 2014.13 Formal evaluation 

results are not yet available, but informants 

from other states reported a significant interest 

in pursuing this option to address long waiting 

lists for HCBS provided through pre-ACA 

waivers. In states implementing CFC, informants 

expressed concerns about disruptions to previous 

arrangements that worked well for many people 

with disabilities.

Recommendation for future research. As 

noted, ACA research to date has included 

little analysis of its effects on people with 

disabilities. Key informants likewise reported a 

disempowering absence of information about 

disability-based impacts. By fall 2015, health 

coverage and related data will be available from 

major federal surveys showing results from 

2014, the first year during which the ACA’s main 

provisions went into effect. Almost certainly, 

a wave of ACA-related research will ensue. If 

past trends hold true, this research will analyze 

data in terms of race 

and ethnicity, income, 

age, gender, state of 

residence, and chronic 

health conditions, but 

not disabilities. The most 

important near-term 

research goal for the 

disability community 

involves ensuring that 

forthcoming surveybased research analyzes 

the coverage, access, 

and other effects of the ACA on people with 

disabilities, along with other important groups. 

Other future research efforts could also prove 

important data:

■ Qualitative research, including focus groups 

and key-informant interviews, could analyze 

the factors associated with differential 

coverage and access gains that different 

groups of people with disabilities experience, 

including differences that involve state of 

residence (and associated policy choices), 

disability category, income, age, race and 

ethnicity, education level, and gender.

Some informants noted that 

extended coverage decreased the 

pressure for people with disabilities

to impoverish themselves to fall 

under Medicaid coverage or to 

pursue a job solely for its health 

benefits. As a result, more people

with disabilities could search for 

jobs that aligned with their skills

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 13
■ Similar qualitative research strategies 

could be combined with data gathered for 

evaluation purposes to analyze the impact of 

expanded Medicaid managed care coverage 

of LTSS, including through demonstration 

projects that combine Medicare and 

Medicaid coverage of dually eligible 

beneficiaries.

■ Researchers could examine new sources 

of administrative data to investigate the 

coverage and services that people with 

disabilities receive through the ACA’s 

insurance affordability programs. Such 

administrative data include information 

about disability status already provided on 

applications for QHP subsidies as well as 

comprehensive information state Medicaid 

programs are increasingly reporting to 

the Centers for Medicare and Medicaid 

Services as part of the Transformed 

Medicaid Statistical Information System, 

which is being phased in. This system 

includes data about enrollment, services, 

costs, demographic characteristics, and 

other factors. Once all personally identifying 

information is removed from these two 

sources of administrative data, they could 

help researchers assess the coverage and 

care that people with disabilities receive 

from QHPs and Medicaid.

■ Health services and public health 

researchers could be encouraged to 

routinely analyze data by disability status, 

along with other key variables.

14 National Council on Disability
Chapter 2. Literature Revie

I

n this chapter, we review studies examining the 

impact of the ACA on people with disabilities. 

The first part of the review discusses the state of 

evaluation studies for ACA provisions that are likely 

to be most important for people with disabilities: 

state health insurance exchanges (Marketplaces), 

Medicaid expansion, and LTSS. Only a few peerreviewed, published studies, or unpublished 

studies are available on these topics as of August 

2014.14 In the second part of the review, we 

discuss publications studying the impact of the 

ACA provision that allows adult dependents 26 

years or younger to remain on their parents’ health 

insurance plans. Much more research describes 

the effects of this provision, dating back to its 2010 

implementation. Although disability rates are much 

lower among younger adults, therefore affecting 

fewer people with disabilities than other ACA 

provisions,15 we include studies on this provision 

because some people with disabilities benefit 

from the dependent coverage requirement. Thus, 

analyzing this research yields important lessons 

that can shape future studies examining the impact 

on people with disabilities of other, more central 

ACA provisions.

Our review used tools such as Google Scholar 

to retrieve both published studies in peerreviewed journals and other articles and reports, 

often called “grey literature.”16 We also examined 

research described in these articles and reports 

and reviewed Web sites of relevant organizations 

(for example, Urban Institute’s Health Reform 

Monitoring Survey Web site and the Kaiser Family 

Foundation’s Health Reform Web site). We visited 

Web sites to find experts conducting research on 

the ACA and people with disabilities.17

Primary ACA Provisions for People 

with Disabilities

Marketplaces and Medicaid Expansion

Only a few studies have examined the effect 

of the ACA on people with disabilities as of 

August 2014. A number of studies report 

outcomes by health status, but that is not 

the same as an explicit focus on people with 

disabilities. Studies that report outcomes 

separately by health status typically use one 

health measure (for example, overall self-reported 

health status). From a disability perspective, this 

approach is simultaneously too narrow, because 

it captures only some people with disabilities, and 

too broad, because it includes many people with 

health problems that do not involve disability.

An important reason for the lack of research 

is the short time that has elapsed since many 

major ACA provisions became effective, with 

the most important coverage expansions and 

insurance reforms beginning in 2014. This short 

time period constricts the availability of data 

sources for analysis even though population 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 15
surveys do include information about disability 

status (as required by ACA Section 4302) and 

coverage. For example, the two primary data 

sources for state-level coverage estimates—the 

American Community Survey (ACS) and the 

Current Population Survey Annual Social and 

Economic Supplement (CPS ASEC)—will not 

provide information about 2014 coverage until 

September 2015 or later. As time passes, it will 

be important for health care researchers, public 

policy analysts, and the disability community 

to monitor whether studies are conducted and 

published that use available data to assess the 

impact of the ACA specifically on people with 

disabilities. To illustrate, National Health Interview 

Survey (NHIS) data about health coverage in 2014 

have become available.18 The NHIS questionnaire 

requests information about disability, but the 

authors are not aware of any published research 

that uses this data to assess the impact of the 

ACA on people with disabilities.19 Some published 

research uses NHIS data to examine issues 

involving people with disabilities, but even studies 

published as recently as June 2015, conference 

presentations scheduled for July 2015, and 

graduate-level theses slated for publication in 

August 2015 examine NHIS data only as late as 

2013.20 The Medical Expenditure Panel Survey–

Household Component (MEPS-HC) has likewise 

released data showing health coverage and other 

characteristics of households interviewed during 

the early part of 2014, including information 

about limitations that signal likely disabilities and 

several options for tracking respondents’ changes 

longitudinally. As far as the authors are aware, no 

studies or reports have analyzed these data to 

show the 2014 effects of the ACA on consumers, 

much less those with disabilities.

That said, the few studies that do report 

outcomes by health status or activity limitations 

that signal the possible presence of disability 

show initial positive impacts of the ACA on 

coverage for people both with and without health 

problems. A few studies also show that coverage 

obtained through the ACA increases access to 

care and, tentatively, health, but these studies do 

not report results by health status.21

Sommers, Kenney, and Epstein overcame 

the previously stated data limitations, finding 

that an early Medicaid expansion in Connecticut 

resulted in substantially greater coverage gains for 

adults whose health problems signaled potential 

disability than for other adults.22 Researchers 

examined coverage changes in Connecticut and 

the District of Columbia, where officials increased 

coverage in 2010 and implemented the ACA 

option to expand Medicaid eligibility before 2014. 

Using the 2008–2011 ACS, researchers compared 

coverage changes in Connecticut and the District 

of Columbia to changes in nearby states that did 

not implement early expansions.23 Their sample 

included people targeted by the expansion: 

childless adults ages 19 to 64 with family income 

below 56 and 200 percent of the poverty level for 

Connecticut and Washington, DC, respectively. 

Researchers reported coverage changes within 

the target group both for adults as a whole and 

for multiple subpopulations, including people with 

health-related limitations that signaled possible 

disability.24 Sommers and colleagues observed 

greater coverage gains in Washington, DC, than in 

the comparison state Virginia, but the ACS’s small 

sample size for the District of Columbia meant that 

this difference was not statistically significant under 

the authors’ metrics.25 By contrast, the Connecticut 

sample was large enough for researchers to detect 

statistically significant differences between that 

state’s coverage changes and those in nearby 

states. Among all Connecticut adults targeted 

by expansion, the proportion of uninsured fell by 

16 National Council on Disability
2.8 percentage points compared to changes in the 

uninsurance rate among similar adults in adjacent 

states. However, among adults within the target 

group who reported health-related limitations 

signaling possible disability, the expansion resulted 

in an 11.2 percentage point drop in the proportion 

of uninsured individuals, representing an almost 50 

percent reduction compared with pre-ACA levels. 

No other subpopulation experienced a comparable 

coverage gain.

Other researchers addressed the delayed 

release of national survey data by developing 

new data sources. For example, Shartzer, 

Kenney, and Zuckerman analyzed the ACA’s 

effects on coverage of adults with chronic illness 

by using data from the Urban Institute’s Health 

Reform Monitoring Survey (HRMS).26 HRMS is 

a quarterly survey that shows the ACA’s effects 

on nonelderly adults. Shartzer and colleagues 

examined changes between September 2013 

and March 2015 in the uninsurance rate of 

nonelderly adults with chronic physical or 

neurological health conditions.27 That rate fell by 

6.7 percentage points, which represented a 50 

percent decline relative to the uninsurance rate of 

13.2 percentage points in September 2013. This 

relative decline was somewhat larger than that 

of adults in general, for whom the uninsurance 

rate dropped by 42.5 percent relative to its 

September 2013 level.28 However, the reported 

difference between relative coverage gains for 

chronically ill adults and for adults in general 

was not statistically significant. Both among 

adults with chronic illness and other adults, 

coverage gains were particularly pronounced 

in states expanding Medicaid and for adults 

with incomes at or below 138 percent of FPL. 

Reductions in the uninsurance rate were also 

pronounced in the income range typically 

qualifying for QHP subsidies—namely, between 

138 and 400 percent FPL. Among adults with 

chronic conditions, the proportion of individuals 

without coverage fell by seven percentage points, 

representing a 53 percent relative decline. Similar 

results were observed for adults as a whole.

Long-Term Services and Supports: 

Selected Issues

It appears there are currently no findings 

of systematic, large-scale studies available 

that examine the impact of dual-eligibility 

demonstrations and the Community First Choice 

(CFC) option. The Centers for Medicare and 

Medicaid Services (CMS) have approved dualeligibility memoranda of understanding for 13 

states, including ten with private managed care 

plans by August 2014.29 The earliest enrollment 

of eligible beneficiaries took place in Washington 

and Massachusetts in the second half of 2013.30

California, which has by far the largest number of 

beneficiaries affected by such demonstrations, 

started enrollment in April 2014. RTI International 

is evaluating state demonstrations for CMS but 

has not yet released study results.31 State-based 

evaluations of dual-eligibility demonstrations in 

the form of enrollment analyses, focus group 

interviews, and key-informant interviews have 

begun. Some preliminary highlight general 

implementation challenges, such as managed 

care program staff with little or no prior LTSS 

experience (“steep learning curve”), concerns 

about the adequacy of provider networks, and 

other difficulties with transmission of accurate 

information,32 but evidence of people with 

disabilities’ experience with these LTSS services 

are generally not available.33 Both formal and 

informal reports suggest that in some states, 

efforts to educate consumers may be falling far 

short of goals. For example, beneficiaries have 

experienced significant confusion and sometimes 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 17
were unable to obtain care despite repeated 

attempts; managed care plans often could not 

reach enrollees to conduct assessments and 

develop care plans; and overall enrollment levels 

appeared to be falling short of projections.34

As of August 2014, CMS has approved 

state plan amendments (SPA) to implement 

the CFC option from seven states: California, 

Connecticut, Maryland, Montana, Oregon, Texas, 

and Washington. California was the first state 

to submit a SPA in December 2011, and it was 

approved by CMS in August 2012.35 We were 

able to find only one document related to an 

evaluation of the CFC option, the 2014 interim 

report by the Department of Health and Human 

Services to Congress.36 This report states, “[I]t is 

too early to assess the 

effectiveness of services 

provided under CFC in 

allowing individuals to 

live independently, the 

impact of such services 

on recipients’ physical 

and emotional health, 

and the comparative 

costs of CFC services and those provided 

under institutional care.”37 The National Opinion 

Research Center is currently conducting an 

extensive evaluation of this provision.38

Dependent Coverage

In this section, we review studies evaluating 

the ACA’s expansion of private dependent 

coverage for young adults, implemented in 

October 2010. Population surveys covering the 

post-implementation period have been available 

since 2012, resulting in a much larger body of 

literature than applies to the ACA provisions 

discussed previously. Here, we first summarize 

main findings for people with disabilities and 

then discuss what these studies can tell us about 

future research directions concerning the ACA’s 

impact on people with disabilities.

In terms of methodology, all studies reviewed 

here contrast outcomes before and after 

implementation for adults 19 to 25 years—the 

age group benefiting from this feature of the 

ACA. The studies then compare that change in 

outcomes with those experienced by certain 

adults over 26 years of age, who did not benefit 

from this policy change. Depending on the study, 

the precise definition of the latter comparison 

group varies between adults ages 27 to 29 and 

those ages 27 to 32.39 The goal of this approach 

is to isolate the causal effect of implementing 

the provision from other 

changes that occurred 

during that time that 

influenced outcomes for 

young adults targeted by 

the provision.

Studies show strong 

reported decreases in 

uninsurance rates. On 

average, the uninsurance rate decreased by 

about six percentage points across the various 

studies (see Table 1). Because the uninsurance 

rate among young adults was 30 percent before 

implementation of the provisions,40 this six 

percentage point decline amounts to a relative 

decrease in the uninsurance rate of about 20 

percent.41 However, estimates vary widely across 

studies. Studies that did not go beyond the 

year 2010 found smaller effects because they 

do not capture the full effect of the provision.42

Sommers and colleagues included data from 2011 

and reported a much higher overall decrease in 

the uninsurance rate during mid-2011 than during 

Among young adults with possible 

mental health care needs, the 

receipt of treatment increased by 

5.3 percentage points once the

dependent coverage provision went 

into effect

18 National Council on Disability
Illustrative Monitoring Questions

Table 1. Main Results of Studies of the Impact of the ACA Dependent Coverage Provision

Study Decrease in Uninsurance Rate Other Results

Studies that report effects separately by health status or disability

Antwi, Moriya, 

and Simon 

(2013)50

3.2 percentage points for all young adults. 

Men, older young adults, and young adults 

with less than excellent self-related health 

status experienced a higher decrease.

Decrease in hours worked 

and in probability of 

working full time.

Porterfield and 

Huang (2014)51

6.1 percentage points for young adults 

with dis-abilities and family income below 

200 percent FPL. 9.0 percentage points 

for young adults with dis-abilities and 

family income above 200 percent FPL. 6.0 

percentage points for young adults without 

dis-abilities and family income below 200 

percent FPL. 9.3 percentage points for 

young adults without dis-abilities and family 

income above 200 percent FPL.

Saloner and 

Lê Cook (2014)52

12.4 percentage points for patients with likely 

mental health issues. 6.5 percentage points 

for patients with likely substance abuse issues.

Increase in mental health 

treatment: 5.3 percentage 

points.

Sommers et al. 

(2013)53

4.7 percentage points for all young adults. 

Decrease is initially higher for those in fair or 

poor health.

Studies that focus on young adults admitted to hospitals

Antwi, Moriya, 

and Simon 

(2014)54

2.9 percentage points for young adults with 

all non–birth-related admissions to hospitals. 

1.3 percentage points for young adults with 

mental illness admissions.

Increase in non–birthrelated inpatient visits: 

3.5 percentage points 

(overall), 9.0 percentage 

points (mental illness–

related visits). No change 

in length of stay, number 

of procedures, and total 

charges.

Mulcahy et al. 

(2013)55

1.7 percentage points for young adults 

admitted to emergency departments.

Scott et al. 

(2015)56

3.4 percentage points for trauma patients. 

The decrease is higher for men, nonHispanic whites, those with relatively less 

severe injuries, and those admitted to 

nonteaching hospitals.

No significant change in 

mortality risk.

(Continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 19
Illustrative Monitoring Questions (continued)

Table 1. (continued)

Study Decrease in Uninsurance Rate Other Results

Other studies

Barbaresco, 

Courtemanche, 

and Qi (2014)57

6.2 percentage points for all young adults. Increase in having a 

primary care doctor: 

3.6 percentage points. 

Increase in excellent 

self-assessed health: 

2.2 percentage points. 

Decrease in medical care 

forgone because of costs: 

2.5 percentage points.

Busch, 

Golberstein, and 

Meara (2014)58

Decrease in annual 

out-of-pocket medical 

expenditures exceeding 

$1,500: 2.4 percentage 

points (57 percent relative 

change).

Cantor et al. 

(2012)59

3.5 percentage points for all young adults.

Carlson et al. 

(2014)60

Yes, but no percentage points reported. Increase in self-rated 

health.

Kotagal et al. 

(2014)61

7.7 percentage points for all young adults. Increase in likelihood of 

having a normal source 

of care: 2.8 percentage 

points.

O’Hara and 

Brault (2013)62

4.2 percentage points for all young adults.

Sommers and 

Kronick (2012)63

2.9 percentage points for all young adults.

earlier periods.43 Similarly, Antwi, Moriya, and 

Simon reported increased coverage gains as time 

since implementation passes.44

Young adults with significant, foreseeable 

health care needs are at least as likely to 

make coverage gains. Several studies reported 

results by disability or health status and 

generally found similar if not higher increases in 

coverage for young adults with health problems 

and foreseeable health care needs than increases 

20 National Council on Disability
for other adults as reported in these or other 

studies. Saloner and Lê Cook found that the 

uninsurance rate among young adults who 

may have mental health care needs and seek 

treatment declined by 12.4 percentage points 

because of the provision.45 No other study finds 

a similarly high decrease but this particular group 

might have an especially high incentive to obtain 

health insurance. One other study, by Porterfield 

and Huang, focused specifically on young adults 

with disabilities and is currently available only in 

the form of a conference presentation.46 They 

found that health care coverage among young 

adults was similar for those with and without 

disabilities. Specifically, coverage for young adults 

with a family income less than 200 percent of the 

FPL increased by 6.1 and 6.0 percentage points 

for those with and without disability, respectively. 

For young adults with a family income above 

200 percent of the FPL, coverage increased by 

9.0 and 9.3 percentage points for those with and 

without disability, respectively.47

Two other studies report results by health 

status. Antwi, Moriya, and Simon found that 

the uninsurance rate decreased slightly more 

for young adults with less than excellent selfreported health than for other young adults, but 

that the difference is not statistically significant.48

Moreover, the former group includes those with 

self-reported “good” health status and is thus 

not limited to young adults with health problems, 

much less those with disabilities. Sommers 

and colleagues found that the uninsurance 

rate initially dropped more strongly for people 

in fair or poor health compared with people in 

good or excellent health but that those gains 

disappeared over time.49 That result is consistent 

with the expectation that people with significant 

health care needs have especially good reason 

to take advantage of new coverage options 

and so are likely to enroll more quickly than 

others are.

Three studies focus on young adults admitted 

to hospitals. Young adults tend not to have 

foreseeable health care needs and therefore no 

particularly strong incentives to obtain health 

insurance through their parents. Correspondingly, 

estimates of coverage change for this population 

group are relatively small. Specifically, the 

uninsurance rate for young adults with non–

birth-related hospital admissions dropped by 

2.9 percentage points.64 Young adults admitted to 

hospitals because of a mental illness experienced 

an even smaller decrease (1.3 percentage points). 

Mulcahy and colleagues reported that the 

uninsurance rate decreased by 1.7 percentage 

points among young adults with nondiscretionary 

visits to emergency departments.65 And Scott et 

al. found a 3.4 percentage point decrease in the 

uninsurance rate among trauma patients.66

Access and affordability of health care 

increases due to the provision. Among young 

adults with possible mental health care 

needs, the receipt of treatment increased by 

5.3 percentage points once the dependent 

coverage provision went into effect.67 Other 

studies found effects among young adults as a 

whole, without separate tabulations for those 

with health problems.68

The effect on health outcomes may be 

positive, but it is hard to detect. Only three 

studies examined health implications and none 

of them focused on people with disabilities. 

Barbaresco, Courtemanche, and Qi reported a 

small increase in excellent or good self-assessed 

health due to the provision.69 Carlson et al. also 

found a positive effect on health in some but 

not all of their analyses.70 Scott et al. could not 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 21
discern a decrease in mortality among young 

adults admitted to trauma centers.71 However, 

they did not include other health measures that 

might have changed because of implementation 

of the provision.

Only one study examines non–health-related 

outcomes. Antwi, Moriya, and Simon estimated 

that the provision decreased the number of hours 

worked and the probability of working full time.72

They argued that young adults may have gained 

more job flexibility because having a full-time job 

is no longer required to obtain health insurance.

Studies on dependent coverage not only 

provide some early evidence of the provision’s 

effect on young adults with disabilities or other 

health conditions, but also highlight trends in 

ACA research, including the type of outcomes 

researchers have focused on and the extent 

to which they have considered people with 

disabilities for their studies. These research 

design decisions may be informative for future 

research efforts on other ACA provisions central 

to people with disabilities, such as Marketplaces, 

Medicaid expansion and LTSS options. In the 

points that follow, we discuss such research 

design features of dependent coverage studies.

Most studies using population surveys 

do not report separate results for people 

with disabilities. Population studies include 

questions about disability, as required by ACA 

§4302. Despite availability of such information, 

studies on dependent coverage typically do 

not report separate results by disability status. 

It is conceivable that they do not include such 

estimates because few young adults have 

disabilities. However, as mentioned earlier, 

disability rates among adults in this age group 

are nonnegligible and Census surveys have 

sufficiently large sample sizes to analyze this 

population group. Moreover, young adults with 

disabilities are an important population group to 

study because of their high health care needs 

and costs. It is therefore unclear why some 

studies focus on various population groups but 

not on people with disabilities. For instance, 

O’Hara and Brault report coverage changes by 

sex, race, ethnicity, English-speaking ability, 

and other demographic categories—but not by 

disability status.73

No study has focused solely on people with 

disabilities. Even studies that report outcomes by 

health status do not provide detailed information 

about people with disabilities; instead, health 

status is just one of many demographic 

categories such as age or gender. It would be 

more useful to health care researchers, public 

policy analysts, and the disability community 

to provide results by various disability types, 

as outcomes may vary greatly among them. 

Shartzer, Kenney, and people with disabilities 

Zuckerman focused on adults with chronic 

physical or neurological illnesses, but they 

did not include other groups of people with 

disabilities, such as people with mental health 

problems.74

Most studies focus on coverage changes 

without investigating access to care and health 

status effects. Health insurance coverage is 

an important prerequisite for accessing health 

care services that improve health, but coverage 

does not guarantee adequate access to all 

services that people with disabilities need. One 

reason dependent coverage studies may focus 

on coverage is that health status effects may 

not become evident until several years after 

implementation.

Studies using general population surveys 

are restricted to the outcomes measured in 

22 National Council on Disability
these data sources. Census surveys such as 

CPS ASEC and ACS are attractive for studying 

the impact of ACA provisions on people with 

disabilities because they use large samples that 

enable analysis of both national and state-specific 

results. However, they have only a limited 

number of health-related questions because they 

cover a broad range of topics. For instance, we 

cannot learn from these surveys whether young 

adults with disabilities received help from their 

parents to obtain health care coverage. Unlike 

NHIS, CPS ASEC and ACS do not ask about 

access to health care.

This literature review has shown that we 

currently have very limited and tentative evidence 

of the ACA’s impact on people with disabilities. 

We next discuss results from our interviews 

with state-based community leaders of disability 

organizations who were familiar with ACA 

implementation in their state, shedding more 

light on how the various ACA provisions have 

affected people with disabilities.

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 23
24 National Council on Disability
Chapter 3. Qualitative Research: Interviews with Key

Informants from the Disability Community

I

n this chapter, we report the results of 

interviews conducted with 16 key informants 

from ten states between March and April 2015. 

The interviews were designed to explore the 

early effects of state-level ACA implementation 

choices on people with disabilities and to provide 

preliminary data to aid in the development of 

research questions, policies, and tracking of 

the ongoing impacts of the ACA on people with 

disabilities. At this stage in implementation, 

five years since the ACA was signed into law, 

our findings reflect only early impressions of 

the ACA’s impact on people with disabilities. 

Given the limited data on this topic, the keyinformant interviews offer valuable insights on 

the experiences of people with disabilities with 

QHPs, expanded Medicaid for low-income adults, 

health care coverage enrollment processes, 

changes to long-term services and supports, and 

other health systems changes.75

Selection of States and Participants

We selected participants from states with diverse 

ACA implementation approaches concerning 

Medicaid expansion, insurance Marketplaces, and 

state options specific to services for people with 

disabilities. First, we compiled information on 

state implementation approaches for all 50 states 

plus the District of Columbia and grouped them 

into broad categories (for example, states that 

expanded Medicaid versus those that have not 

expanded eligibility). Second, we identified states 

where research team members had knowledge 

of or existing connections with disability leaders 

or organizations. We then used this information 

to compile a list of 13 states, prioritized on the 

basis of maximum variation in implementation 

choices, availability of existing contacts, and 

distribution across geographic regions of the 

United States. After obtaining feedback on state 

selection from National Council on Disability 

members, we conducted outreach to contacts in 

each target state.

We interviewed participants from ten states; 

the ACA implementation characteristics for each 

participating state are summarized in Table 2. Half 

of the states (N=5) opted to expand Medicaid to 

cover low-income adults up to 138 percent of the 

FPL. Two of the states pursued a nontraditional 

Medicaid expansion plan using Section 1115 

waivers (for example, Medicaid funds used as 

premium assistance for newly eligible adults to 

purchase QHPs), and three of the states had 

not expanded Medicaid. We classified states’ 

success with Marketplace enrollment using 

table 1 in Blumberg et al., which defines “high,” 

“medium,” and “low” success rates, respectively, 

on the basis of enrollment of more than 25 

percent, from 15 percent to 25 percent, and 

under 15 percent of the state’s target population 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 25
Illustrative Monitoring Questions

Table 2. State ACA Implementation Characteristics of States Included in the Interviews 

at the Time of Interviewee Selection (January 2015)

State Medicaid 

Expansion

Enrollment 

Success*

States Options 

Relevant to 

People with 

Disabilities**

Exchange Type

Arkansas Yes, nontraditional Medium CFC*** State partnership

California Yes High CFC & DD State-based

Colorado Yes High DD State-based

Florida No High None Federally facilitated

Kansas No Medium None Federally facilitated

Montana No Medium CFC Federally facilitated

North 

Dakota

Yes Low None Federally facilitated

Oregon Yes Medium CFC & DD*** Federally supported 

state-based

Pennsylvania Yes, 

nontraditional****

Medium None Federally facilitated

New York Yes High DD State-based

Notes:

*Enrollment success is based on Blumberg et al., table 1.77 The original table shows each state’s 

current enrollment (as of April 2014) in the Marketplace as a percentage of the target population 

(defined as pre-reform non-group insurance enrollees and uninsured individuals who are ineligible for 

public insurance or affordable employer-based coverage). We have classified states into three broad 

categories of enrollment success using this percentage: low (below 15 percent), medium (15 percent 

to 25 percent), and high (above 25 percent).

**Community First Choice (CFC): States participating in the Section 1915(k) Community First Choice 

State Plan Option.78 Dual Demonstrations (DD): State participating in the State Demonstrations to 

Integrate Care for Dual Eligible Individuals.79

***Participants provided different information on implementation status.

****The state’s original proposal for Medicaid expansion involved a Section 1115 waiver. However, the 

state’s new governor now plans to implement a standard Medicaid expansion.

26 National Council on Disability
(defined as pre-reform non-group insurance 

enrollees and uninsured individuals who are 

ineligible for public insurance or affordable 

employer-based coverage).76

Most states had medium or high Marketplace 

enrollment success (N=5 and N=4, respectively); 

one state had low enrollment success. For 

LTSS options specific to services for people 

with disabilities, the CFC option was being 

implemented by four of the states shown in the 

table, and the State Demonstrations to Integrate 

Care for Dual Eligible Individuals, or “Duals 

Demonstration,” option was being implemented 

in four of the states shown in the table. The 

states also represented four Marketplace types: 

federally facilitated (N=5), state-based (N=3), 

state partnership (N=1), and federally supported, 

state-based Marketplaces (N=1).

Within each identified state, we purposely 

selected participants to provide broad 

perspectives on experiences with the ACA 

among people with disabilities. We targeted 

state-based community leaders (not employees 

of state agencies) who worked or volunteered 

for disability organizations and were familiar with 

ACA implementation in their state. In selecting 

our participant sample, we aimed to identify 

participants who have disabilities themselves 

and displayed diversity across functional 

categories of disability and demographic 

characteristics. We created an initial list of 

potential participants and organizational 

affiliations, then obtained feedback and additions 

from study partners and the National Council 

on Disability. In states where we did not have 

an individual identified who met the participant 

selection criteria, we identified and contacted 

individuals and organizations with knowledge 

of key disability stakeholders in the state to ask 

for recommendations for potential interviewees. 

Potential participants were then contacted by 

the project team by e-mail and phone and invited 

to participate. In total, we contacted more than 

60 individuals in the outreach process. Among 

state-based disability rights leaders who declined 

to participate and were themselves people with 

disabilities, limited knowledge of the ACA was a 

commonly cited reason.

Overall, we were able to identify 16 suitable 

interview participants for the ten state-based 

interviews. Four interviews had one interviewee 

each and the other six had two interviewees 

each. Table 3 displays characteristics of the 16 

interview participants. Half (N=8) of them had 

personal disability experience, either directly 

(N=5) or through an immediate family member 

(N=2) or other individual (N=1) for whom the 

participant was caring. Participants’ personal 

disability experience included physical (N=5), 

vision (N=1), hearing (N=1), developmental (N=1), 

and other (N=1) disabilities; two participants 

indicated two disability categories, and one 

participant with personal disability experience did 

not disclose a disability category. In most of the 

interviews—in eight out of ten states—at least 

half of the interviewees had a personal disability 

experience.

All 16 participants had rich professional 

experience working on behalf of people with 

disabilities. Participants were engaged in both 

direct services and advocacy as well as policy 

and systems changes to improve health care 

access for this population. Most participants 

worked or volunteered for a cross-disability 

organization (that is, organizations working 

for the benefit of all people with disabilities), 

and one participant worked for a disability 

organization that served individuals with 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 27
rights organizations, centers for independent 

living, legal aid, and disability and health 

programs. Most of these organizations (N=10) 

were accountable to people with disabilities 

through boards, advisory councils, and 

memberships in which people with disabilities 

and their caretakers constituted a majority. The 

majority of participants were involved in policy 

advocacy to improve health care for people with 

disabilities, both prior to the ACA and in recent 

years focusing on ACA implementation issues. 

Several participants had served on committees 

or provided input on state policy related to 

Medicaid reform and ACA implementation.

Five participants provided legal-based services 

related to access to health care for people with 

disabilities through their work for legal services 

organizations and state protection and advocacy 

organizations. Nearly half of participants (N=7) 

had a background in providing other direct 

services, including experience with centers for 

independent living, special education, habilitative 

and rehabilitative services, community mental 

health services, services for families of children 

with disabilities and special health care needs, 

peer support, and health coverage advocacy for 

people with disabilities. Four participants served 

as health care Navigators, assisting people with 

disabilities enrolling in coverage under the ACA; 

two of those who served as Navigators also held 

leadership roles in their respective Navigator 

programs.

Data Collection and Analysis

Between March and April 2015, we conducted 

ten state-based group interviews by phone 

following a semi-structured guide. Interviews 

included one to two key-informant participants 

and two to four research team members; during 

Participant Characteristics

Characteristic Number (Percent)

Gender

Male

Female

7 (44 percent)

9 (56 percent)

Age

Mean (Range) 53 years (32 years 

to 72 years)

Race/ethnicity

 Non-Hispanic 

White

 Non-Hispanic Black

 Asian

 No response

12 (75 percent)

1 (6 percent)

1 (6 percent)

2 (13 percent)

Personal disability experience*

 Physical

 Vision/Hearing

Developmental

Other

Unspecified

None

5 (31 percent)

2 (13 percent)

1 (6 percent)

1 (6 percent)

1 (6 percent)

8 (50 percent)

Organizational affiliation

 Cross-disability 

organization

 Other disability 

organization

15 (94 percent)

1 (6 percent)

Note: *Personal disability experience includes 

participants who have disabilities themselves 

or have an immediate family member or other 

individual for whom the participant was caring 

who has a disability.

physical, cognitive/intellectual, and mental 

health/psychiatric disabilities. Participants 

worked for or were affiliated with many 

organizational types, including disability 

28 National Council on Disability
each interview, one research team member 

facilitated the interview and other team members 

added follow-up and clarifying questions. 

The interview guide used broad, open-ended 

questions followed by more specific probes and 

covered the following domains: experiences 

of people with disabilities with QHPs offered 

through the insurance Marketplace, experiences 

of people with disabilities with expanded 

Medicaid for low-income adults, barriers and 

facilitators to enrollment in health care coverage 

for people with disabilities, changes to LTSS, 

employment impacts for people with disabilities, 

and other effects of health system changes on 

people with disabilities. Interviews were audio 

recorded and lasted 50 to 100 minutes, with an 

average length of 80 minutes. Members of the 

research team listened to the phone interview or 

recording for each interview, took detailed notes, 

and conducted a brief post-interview discussion 

to reflect on key emerging themes and areas 

warranting additional exploration in subsequent 

interviews.

Members of the transdisciplinary team (with 

expertise in the health of people with disabilities, 

social insurance policy, family medicine, public 

health, and qualitative methods) reviewed 

interview notes concurrent with data collection 

and used a thematic analysis approach to identify 

emergent themes.80 We developed a preliminary 

coding scheme using ACA implementation topics 

as a priori codes and early interview notes. After 

the first four interviews, an oversight group of 

investigators reviewed codes and discussed 

emergent results. For subsequent interviews, 

we used an iterative process to independently 

code interview notes, meeting in small groups 

to discuss codes and new findings. The 

emergent themes are reported here along with 

recommendations for potential areas of focus for 

future research and policy.

Results

Themes emerged in nine core areas: coverage 

options, enrollment processes, benefits and 

features of newly available health plans, postenrollment barriers, long-term services and 

supports, health system reforms, employment 

and financial impacts, engagement of people 

with disabilities in developing new programs, and 

data collection. These themes are described in 

this section with illustrative quotes.

Coverage Options

Medicaid. Across all interviews, participants 

identified Medicaid as the main coverage option 

accessed by people with disabilities. Participants 

described Medicaid as the “first resource” 

for people with disabilities because of more 

comprehensive benefit packages, long-term care 

coverage, and waiver programs providing access 

to additional services and supports. A participant 

from Colorado stated,

For people with significant disabilities, insurance just doesn’t work. Medicaid is really 

what you need.... Insurance doesn’t pay for 

what we need. It doesn’t pay for outdoor, 

heavy-duty wheelchairs; it doesn’t pay for 

personal assistance. I guess it pays for 

medications, doctor visits, that kind of stuff. 

But the big expenses are really what people 

consider long-term care. (Colorado)

Participants tended to work for organizations 

primarily serving people with disabilities with low 

incomes, thus a large share of their constituents 

were Medicaid beneficiaries. Although many 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 29
people with disabilities already qualified 

for Medicaid on the basis of their disability, 

participants discussed subpopulations of people 

with disabilities who may be experiencing more 

changes in coverage options as a result of the 

ACA. Specifically, Medicaid expansion was 

viewed as an important change for uninsured 

people with disabilities who had not previously 

qualified for Medicaid on the basis on their 

disability status or were in a waiting period before 

their disability benefits and Medicare coverage 

began. Participants 

in California provided 

several examples of 

groups that were likely 

to benefit, including 

“people who are deaf, 

who often do have 

lower-income jobs, 

but the sheer fact of 

deafness wouldn’t 

inherently qualify 

you for [Medicaid] ... people who are older 

immigrants [with functional limitations] who do 

not have Medicare.” In states that did not expand 

Medicaid, however, some uninsured people with 

disabilities with low incomes remain without 

coverage and access to appropriate care. People 

with family income below 100 percent of the FPL 

are not eligible for subsidies to help purchase 

insurance through the Marketplace, making 

QHPs unaffordable for them; therefore, in states 

that did not expand Medicaid, the individuals 

who do not qualify within pre-ACA Medicaid 

categories are de facto excluded from coverage.81

As one interviewee explained,

Florida didn’t expand Medicaid, so that 

leaves all individuals under 100 percent 

of the federal poverty level, who are our 

poorest and often our sickest individuals, 

who cannot get coverage. They can’t afford 

it. Yes, they’re exempt from the fee [for 

not having coverage], but that doesn’t help 

them because they can’t get coverage ... 

[A person with disability under 100 percent 

FPL] who may not have Social Security approval at this point or maybe doesn’t qualify 

per se for Social Security because they’re 

able to work in some ways, they are being 

left without treatment still. In fact, I had 

someone not long ago 

say to me, “Well, I’ll 

just continue to go to 

the hospital, like I always did.” (Florida)

Differences across state 

Medicaid programs preACA also influenced how 

options were evaluated 

under the ACA, as 

robustness of benefits for both traditional and 

expansion Medicaid coverage varied between 

states. Participants often used their state’s preACA Medicaid coverage as a point of reference 

for describing the merits of new coverage 

options. So variations in the generosity of 

covered benefits for adults’ pre-ACA affected 

interviewees’ analysis of benefits for newly 

eligible adults.

Qualified Health Plans. Participants saw 

the availability of QHPs through health 

insurance Marketplaces as having limited 

impact for people with disabilities, mainly 

helping those who had sufficient income to 

purchase private individual insurance but preACA were prevented from doing so because 

of preexisting condition exclusions. The end of 

preexisting condition exclusions and lifetime 

Families of children with disabilities 

who had previously accessed 

Medicaid as “back-up” or “wraparound” coverage to private 

employer-based or individual 

insurance could not continue 

this practice if they changed to 

purchasing QHPs with subsidies

30 National Council on Disability
spending caps was viewed as a “step forward,” 

especially for people with disabilities with high 

enough incomes to purchase private insurance. 

Participants in New York, a state that had had 

guaranteed issue and community rating for 

private insurance but no individual mandate 

before the ACA,82 emphasized the affordability 

of QHPs purchased through the Marketplace 

compared with the cost of private individual 

insurance before the ACA:

[The ACA affected 

people with disabilities] at any higher 

income who were 

priced out of the 

individual insurance 

market—because it 

was very expensive in 

New York—the prices 

of direct pay insurance 

were cut by 53 percent they said at the 

beginning, and that’s unsubsidized. Then 

add in the subsidies and people have much 

more affordable access to comprehensive 

health insurance. (New York)

Coverage options for people with “mild” 

disability. Although traditional Medicaid 

remained important for self-identified people 

with disabilities, participants saw QHPs and 

the Medicaid expansion as critical to another 

group of people with “mild” disabilities that 

are not severe enough to establish eligibility 

for most public benefit programs such as 

Social Security Disability Insurance (SSDI) or 

Supplemental Security Income (SSI). Individuals 

with a “mild” disability were described as 

more likely to experience changes in coverage 

under the ACA, but participants noted a lack 

of knowledge about this population’s health 

care experiences because of the group’s more 

limited engagement with disability programs 

and organizations.

The Medicaid expansion has, we think, 

admitted in a number of people with disabilities who are not going to be captured 

in terms of who they are and what their 

experience is but who inevitably are people with disabilities, who are within the 

income level that 

would make them 

eligible for the expansion, who are not on 

any other programs 

or roles. I have a 

general sense that 

that’s a benefit, a 

pretty strong benefit.

(California)

Participants indicated that this population may 

include individuals with chronic physical or 

mental health conditions that “rise to the level 

of impairment,” but these individuals may have 

fewer or less apparent limitations than those 

with “severe” disability. Participants noted 

that individuals in this population may not be 

recognized as people with disabilities because 

they do not self-identify as having a disability or 

because their disabilities are within the scope of 

the Americans with Disabilities Act definition of 

disability but not within more narrow definitions 

that would qualify them for receipt of certain 

disability services. As a participant from Colorado 

stated:

I think there are a whole lot of people out 

there with so-called mild disabilities, and 

Participants from states that did not 

expand Medicaid shared that it was 

common for working people with 

disabilities with incomes below 

100 percent of the federal poverty 

level to be surprised not to qualify 

for help purchasing coverage

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 31
they have a disability and it affects their 

lives but it’s not such a big part of their lives 

that they feel the need to join an organization. And those are probably the people that 

are using the exchange. Those are the people that have more traditional mainstream 

jobs that would be using the exchange. The 

kinds of people that join our organization 

tend to be the people with the most significant disabilities.

Benefits for families and young adult children.

Participants expressed positive views of the 

option for children to 

remain on their family’s 

insurance plan up to age 

26. A participant from 

Colorado explained the 

effect on the stability of 

families: “[It impacts] 

every kid with a disability 

whose parents have a 

job—it’s huge. It gives 

them an option of not having to impoverish 

themselves immediately to get SSI.”

Several interviewees emphasized the 

importance of this change to families with 

children who have autism or developmental 

disabilities. In New York, where coverage 

through parents’ insurance was already available 

up to age 29, participants noted that the ACA 

regulations provided a more affordable coverage 

option than the separate premium required under 

the existing state law.

Consequences to existing coverage options.

New coverage choices under the ACA have also 

affected some previously advantageous state 

and local programs and coverage options. A 

participant from Florida provided the example 

of a local health care district that ended an 

affordable health coverage program in response 

to subsidized QHPs being made available through 

the insurance Marketplace. Because Florida did 

not expand Medicaid, the end of this program 

left many individuals below 100 percent of the 

FPL ineligible for QHP subsidies and without 

coverage.

One issue involved the ACA’s denial of QHP 

subsidies when consumers receive other 

forms of comprehensive coverage, such as that 

typically furnished by Medicaid and the Veterans’ 

Administration (VA). Participants from North 

Dakota perceived this 

prohibition as a limitation 

that faced people with 

disabilities who change 

from private insurance 

plans to subsidized 

QHPs. Families of 

children with disabilities 

who had previously 

accessed Medicaid 

as “back-up” or “wrap-around” coverage to 

private employer-based or individual insurance 

could not continue this practice if they changed 

to purchasing QHPs with subsidies. Similarly, 

veterans with disabilities could use employerbased insurance as their primary coverage and 

VA health benefits as secondary coverage—a 

valuable option in a rural state where a veteran 

may need to travel a long distance to access VA 

health care. But veterans could not purchase 

QHPs using subsidies while retaining their VA 

health benefits.

Enrollment Processes

People with disabilities who enrolled in QHP 

or Medicaid coverage through insurance 

“Medicaid customer service is an 

hour on hold, and a lot of people 

with disabilities and low-income 

people have [prepaid cellphones 

with] 200 minutes a month, but 

they’re expected to sit on hold for 

an hour. That doesn’t work

32 National Council on Disability
Marketplaces faced significant barriers, and 

Navigators and disability organizations played an 

important role in facilitating access to health plan 

information and enrollment. Interviewees reported 

that people with disabilities experienced Medicaid 

enrollment backlogs and delays in QHP application 

processing. Participants from states that did not 

expand Medicaid shared that it was common for 

working people with disabilities with incomes 

below 100 percent of the federal poverty level 

to be surprised not to qualify for help purchasing 

coverage. A participant from Florida who had 

provided enrollment assistance stated, “The 

reaction was quite often disbelief, frustration, 

because they thought that everyone was entitled 

to insurance now ... The 

message was not as 

clearly communicated as 

it needed to be.”

Although these 

enrollment problems 

were not unique to 

people with disabilities, 

some participants shared concerns that 

the barriers were amplified for people with 

disabilities, who may have more complex health 

coverage issues. As a participant in Colorado 

noted, “Medicaid customer service is an hour on 

hold, and a lot of people with disabilities and lowincome people have [prepaid cellphones with] 

200 minutes a month, but they’re expected to sit 

on hold for an hour. That doesn’t work.”

Accessibility features of insurance 

Marketplaces. Most participants were not 

aware of any accessibility features to assist 

people with disabilities in their state in enrolling 

through the insurance Marketplace. A participant 

from North Dakota indicated there was a 1-800 

phone number available for hearing-impaired 

consumers. Participants in California noted that 

accessibility features were a point of advocacy 

for the disability community and considered for 

the state Marketplace but were ultimately not 

included in the Marketplace because the state 

Medicaid program lacked the capacity to respond 

to individuals who identified a need for alternate 

formats. Participants from other states described 

Navigators and disability advocates helping to 

bridge the gaps in accessibility. One participant 

who had served as a Navigator in New York 

provided specific examples of how the Web site 

was inaccessible for blind consumers and lacked 

accessible communications features for people 

who are deaf or hard of hearing. In New York, 

consumers who were 

deaf or hard of hearing 

faced an additional 

barrier if they lost their 

Marketplace login 

information, because 

a verbal statement via 

phone was required to 

regain account access; the only alternative was 

a burdensome process involving additional calls 

and faxed documents.

Navigators and enrollment assistance.

Participants consistently highlighted Navigator 

programs and advocacy provided by disability 

organizations as the main facilitators of people 

with disabilities’ enrollment in coverage. 

Specifically, participants described the 

effectiveness of disability organizations that were 

funded to provide Navigator services. Participants 

reported that standard Navigator training included 

only basic disability awareness information and 

did not adequately prepare most Navigators 

to address enrollment issues for people with 

disabilities. However, Navigators based at 

[Co]verage does not equate with 

access to care. Several barriers

obstructed access to care even for 

people with coverage to pay for it

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 33
disability organizations were able to draw on 

their existing knowledge to assist people with 

disabilities in the enrollment process:

[People with disabilities’ experiences were] 

a matter of what entry point they chose 

into the system. If it was a person with a 

disability who chose to go into the IL [independent living] center, where they had 

trained Navigators who also were already 

working with different disability populations and understood accommodations, 

then probably those needs 

were met. If they walked 

into their county library, then 

probably not. There were a 

lot of different access points 

... mostly county libraries 

and health departments, 

DHS offices ... [The Navigators] had basic information ... 

but it’s not like you can run 

someone through a one-day, 

two-day course and have them come out 

on the other side understanding the complexity of disability accommodation needs.

(Arkansas)

When ACA-funded Navigator programs were 

not adequate to meet the needs of people with 

disabilities, disability organizations and informal 

peer networks played an important role in 

assisting people with disabilities in the enrollment 

process. Participants in Pennsylvania and California 

provided examples of disability organizations that 

operated helplines, in one case using funding from 

a private foundation. Other participants noted 

the presence of application councilors in health 

centers as an important path for enrollment.

Availability of disability-relevant health plan 

information. Health plan information specific to 

the health care needs of people with disabilities 

was not easily accessible through state or 

federal insurance Marketplaces, necessitating 

considerable independent information gathering 

by people with disabilities and their advocates. 

Many participants noted that insurance plans and 

health care providers had to be contacted directly, 

generally with the assistance of Navigators or 

advocates, to 

obtain pertinent 

information:

It was a question of whether 

you could get 

on the phone 

and try to extract enough 

information 

from a plan to 

be useful.... 

[You try to] get 

an evidence of coverage document [with 

detailed descriptions of covered services] 

before you sign up for a plan, which is really 

the only thing that reveals the answers to 

some of the questions that people had, and 

that depends on whether states ... allow for 

those to be provided without actually signing 

up—some do and some don’t. It’s kind of a 

tangled web of problems and solutions that 

require a lot of individual tenacity and innovation, particularly on the part of the Navigators or whoever is assisting people to try to 

get the answers that they need. (California)

People with disabilities sought detailed 

information on covered services, including the 

“Now that you have coverage 

and you don’t know how to use it, 

someone needs to help you learn 

how to use that coverage .. li

Insurance 101 .. to think abo

the community at large, how many 

people have never had coverage

So they’re getting the coverage 

through the Affordable Care Act, but 

they don’t know what to do with it.

34 National Council on Disability
number of visits for certain therapies, specific 

equipment types, and specific providers. Drug 

formularies were another area of concern; 

plans provided comprehensive listings of 

covered prescription medications, but they were 

difficult to understand and sometimes required 

consumers to look in the footnotes to see that 

their prescription would be covered only after 

other medications were found to be ineffective 

for the patient (that is, “fail first”).

Availability of information on disabilityspecific Medicaid options. The majority 

of participants familiar with Marketplace 

enrollment indicated that in their states, 

people with disabilities with incomes above 

138 percent of the federal poverty level were 

not identified and provided with accurate 

information about their potential eligibility 

for unique Medicaid coverage options such 

as buy-in or medically needy spend-down. 

Several participants noted that Marketplace 

enrollment processes did not include adequate 

questions to identify people with disabilities. 

Not having questions about disability included 

in standard Navigator protocols made it difficult 

for Navigators in some states to match people 

they assisted with the best options to meet 

disability-related health care needs.

Unless the question gets asked through 

the Marketplace, we have no reason [to 

ask about disability]. Except sometimes 

when I’m working with a consumer I will 

ask them what their health needs are. 

Oftentimes that’s when they’ll disclose a 

health condition, but outside of that there 

really is no question to ask them outside 

of what kind of health care issue they have 

so we can help them choose a plan. (North 

Dakota)

Even if people with disabilities were identified, they 

were often not provided with information on their 

eligibility for disability-specific Medicaid options, 

and Navigators who received only standard training 

lacked knowledge of these options. Navigators 

from disability organizations, however, were able to 

draw on their existing knowledge of these Medicaid 

programs to address this gap:

[I]t’s background information we have 

being in the field of people with disabilities, we know those options. If I came off 

the street and was hired as a Navigator 

without having a background with people 

with disabilities, I don’t know where you’d 

get that information other than sending 

them to the state Medicaid office. (North 

Dakota)

In contrast to the experience in North 

Dakota, participants from New York described 

Marketplace enrollment questions about need 

for personal or long-term care and interest 

in the Medicaid buy-in program. In this case, 

the state insurance Marketplace “[made] the 

effort to identify people so that people don’t 

enroll in the wrong plan when they could get 

better coverage.” Participants in New York 

also noted that although their single eligibility 

system had not yet “achieved the ‘no wrong 

door,’” it was successfully identifying enrollees 

for other Medicaid programs. Differences 

across participant experiences also suggested 

that some state-based Marketplaces (New 

York, California) may be more successful than 

the federal Marketplace in linking Medicaid 

determination and enrollment with the insurance 

exchange. However, the success of state-based 

Marketplaces was not uniform, as Colorado’s 

state-based Marketplace was described as 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 35
lacking connectivity with Medicaid determination 

and enrollment.

Retention challenges. In addition to the 

initial enrollment process, several participants 

noted concerns about people with disabilities’ 

experiences with redetermination and continued 

coverage in future enrollment periods. In North 

Dakota, the point-in-time income evaluation used 

in Medicaid determination tended to result in 

disenrollment for low-income beneficiaries with 

incomes that fluctuate through the year. This 

practice may increase enrollment challenges 

and decrease continuity of coverage compared 

with evaluation that accounts for an individual’s 

income on an annual basis. Participants from 

Oregon anticipated challenges keeping newly 

covered people with disabilities engaged in 

future enrollment cycles, regardless of the 

state’s initial success enrolling previously 

uninsured individuals in coverage. Participants 

shared that many new enrollees face confusion 

about the reenrollment process but that fewer 

resources would be available for reenrollment 

assistance than were available for the initial 

enrollment effort.

Benefits and Features of Newly 

Available Health Plans

Participants who had served as Navigators or 

worked directly with people with disabilities to 

help evaluate and select coverage had more 

extensive knowledge of QHP benefits and 

features than did participants who had not served 

in these Navigator or direct advocate roles. 

However, even the participants who had served 

as Navigators had unanswered questions about 

QHP benefits, suggesting a knowledge gap 

around how well QHPs met the needs of people 

with disabilities. Participants from Colorado 

and Montana also mentioned the exemption of 

employer-sponsored self-funded health plans 

from many ACA requirements and the need for 

more information about the experience of people 

with disabilities with these benefits.

Alignment of benefits in Medicaid-expansion 

states. Participants from states that opted to 

expand Medicaid described mixed experiences 

in the alignment of existing Medicaid benefits 

and of benefits for the expansion population. 

Participants from California, Colorado, and 

Oregon noted that the Medicaid benefits for 

newly eligible low-income adults were the same 

package as existing Medicaid benefits. In North 

Dakota, participants indicated that the private 

managed care health plan selected as the 

alternative benefit plan (ABP) for the Medicaid 

expansion offered a less comprehensive benefit 

package and a more limited provider network 

for people with disabilities than had the state’s 

previous Medicaid coverage. None of the 

participants were knowledgeable of the medical 

frailty exemption process for opting out of ABPs. 

The lack of such knowledge in states with ABPs 

that differ from Medicaid benefits for other adults 

suggests limited use of this provision to date as 

well as limited or ineffective efforts to educate 

beneficiaries about this process, a situation that 

could have major implications for people with 

disabilities.

Alternative Medicaid expansion plans. States 

also had the option to craft their own Medicaid 

expansion plan using a Section 1115 waiver (socalled nontraditional Medicaid expansion), and 

two of the states represented in our sample 

pursued this option. Pennsylvania’s nontraditional 

Medicaid expansion plans were strongly opposed 

by the disability community. However, following 

the election of a new governor, the state was 

36 National Council on Disability
changing course to pursue a Medicaid expansion 

model that would extend the existing state 

Medicaid benefits to the expansion population. In 

Arkansas, the nontraditional Medicaid expansion 

used funds to provide premium assistance for 

the purchase of QHPs for newly eligible adults. 

This plan was described as a positive measure 

compared with the likely alternative of no 

Medicaid expansion in the state.

Qualified Health Plan features. Participants 

familiar with QHPs described significant 

limitations in states’ chosen packages for 

EHBs. Participants in North Dakota noted that 

habilitative, mental health, and equipment 

services became less accessible on private 

insurance plans because the state chose 

the “cheapest essential benefits, maybe not 

considering all the impacts for all consumers.” 

Although lifetime and annual benefit payment 

limits for EHBs are prohibited, EHBs restricted 

important services for people with disabilities in 

other ways:

Physical, occupational, and speech therapy: 

60 visits per condition, per lifetime. That’s it. 

And that is whether it’s rehabilitation, which 

is regaining function, or habilitation, which 

would be maintaining function. Home health 

care: 40 visits a year. Skilled nursing: 200 

days per year. Medical equipment: standard 

equipment only. Hearing aid: one single 

purchase every three years. One external 

prosthetic device per limb, per lifetime. God 

forbid you ever need a different prosthesis.

(New York)

Additionally, participants noted that people with 

disabilities across all states were encountering 

challenges with prescription medication coverage 

under QHPs’ preferred drug lists, often facing 

“fail first” policies that can interfere with 

complex drug regimens:

For a lot of people with disabilities, they 

have a number of different drugs that 

they take together, and it’s everything all 

together is what makes life work. If you pull 

away one, it may affect more than just that 

one thing that you’re addressing. So it’s really important to not mess with medications 

that work. (Colorado)

Impacts of cost sharing. Participants emphasized 

the financial burden on people with disabilities 

who enroll in QHPs, including both premiums and 

out-of-pocket costs. One participant described 

QHP cost-sharing as one of the “serious 

downsides” of the ACA:

There are people with disabilities in the 

pool who are purchasing private insurance 

through the Marketplace and then when 

they try to use it they’re discovering—as 

many other people are too— that the 

copays are keeping them from receiving 

health care services. (California)

Another participant from Florida said some QHPs 

were a “smoke screen” because the deductibles 

and premiums were so unaffordable for people 

with disabilities. Some participants noted that 

those copays have greater impacts on people 

with disabilities, who are likely to use more 

health care services. Participants from North 

Dakota, however, described largely positive 

response to the cost of QHPs, with subsidies 

that were perceived as making private coverage 

more affordable for people with disabilities. 

Participants in New York—a state where insurers 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 37
had to sell an insurance policy to any applicant 

and could not vary insurance premiums except by 

geography pre-ACA—highlighted the steep drop 

in premiums for private insurance plans with the 

advent of the ACA’s individual mandate, but they 

noted that people with disabilities can still face 

barriers with high deductibles and other forms of 

out-of-pocket cost-sharing.

Provider networks. Provider networks 

were often a determining factor in people 

with disabilities’ QHP selections. New York 

participants highlighted narrow provider networks 

as a key concern for people with disabilities; 

before April 2015, New York QHPs did not include 

options for out-of-network coverage (unlike 

state Marketplaces in which preferred provider 

organizations (PPOs) or tiered provider networks 

covered non network care, albeit with elevated 

cost-sharing).83 One New York participant stated, 

“[For] someone who sees a lot of doctors it’s 

going to be almost impossible to find a onesize-fits-all plan.” Participants in Pennsylvania 

described “sculpting and tiering” of networks 

that resulted in low QHP premiums but restricted 

access to health systems, for example, by 

covering primary care visits with relatively low 

copays only at federally qualified health centers. 

On the other hand, some participants from other 

states described QHPs’ limited provider networks 

as normal in rural regions, where it is common to 

have fewer choices of health plans and providers. 

We discuss rural health care access further in the 

section “Postenrollment Access Barriers.”

Coverage limitations for durable medical 

equipment, habilitative services, and mental 

health care. For both Medicaid and QHP benefits, 

participants raised the most concerns about 

the adequacy of coverage for durable medical 

equipment (DME), habilitative services, and 

mental health care. Two participants compared 

the limitations in DME coverage to Medicare 

guidelines, noting that current benefit problems 

are a continuation of covering only what is 

needed in the home instead of “what’s needed 

for life.” The inclusion of habilitative services in 

the EHB requirements was viewed as a positive 

step, but disability organizations now face the 

challenge of educating the broader health care 

community about habilitation. Several participants 

relayed that people outside the disability 

community don’t yet understand what habilitative 

services are and said that it is too early to assess 

people with disabilities’ experiences with these 

benefits. Mental health benefits were a concern 

for several participants who had heard of QHPs 

that provide coverage that does not follow 

ACA and other state and federal parity laws; 

one participant likened mental health benefits 

in Montana QHPs to “catastrophic insurance,” 

falling far short of adequate coverage.

Health plan compliance with benefit 

requirements. The degree to which health plans 

would cover the disability-specific services 

defined in the EHBs and the mechanisms for 

monitoring health plan compliance also were 

points of concern. Participants relayed skepticism 

that health plans would actually adhere to the 

new benefit requirements and might have to 

“get caught” before they comply. Given the 

complexity of the new requirements, participants 

conveyed uncertainty and confusion about the 

implementation of these provisions and how 

health plans would be held accountable for 

delivering benefits that are important to people 

with disabilities.

Participants in Pennsylvania noted concerns 

about the level of coverage that would be 

provided for habilitation and rehabilitation services 

38 National Council on Disability
and the lack of involvement of the state insurance 

department in the regulation of plans purchased 

through the federally facilitated Marketplace:

We think that the EHBs, specifically the category of habilitation and rehabilitation, really 

have a significant impact on persons with 

disabilities. [Some of the concerns might be 

expressed in questions about how] QHPs 

have put [their plans and guidance] together 

for their baseline in the first year. Also, what 

[is that] going to look like in future years, 

and what [is] the definition for medical necessity?... [What] is [used] for determining 

which plans are giving those [habilitation 

and rehabilitation] services in the way that 

they can or should be [beneficial] to people who need them]?.... We’re concerned 

[about] our state insurance department, 

which has been relatively hands off because 

it’s not their Marketplace—there’s questions 

about enforcement. (Pennsylvania)

Postenrollment Access Barriers

Advocates frequently focus on coverage as the 

end goal for insurance reform. Participants in this 

study, however, reminded us that coverage does 

not equate with access to care. Several barriers 

obstructed access to care even for people with 

coverage to pay for it.

Knowledge of how to use coverage. Many 

receiving coverage through Medicaid expansions 

or exchange QHPs had never had health 

insurance before and were unsure how to 

navigate the system to obtain care. A participant 

from Colorado said, “You get a Medicaid card, but 

no one tells you what to do with it.” Funding for 

Navigators typically ended at enrollment, so the 

newly covered were left alone to wrestle with 

Postenrollment Access Barriers

■ Knowledge of how to use coverage

■ System capacity and access problems

■ Rural access disparities

learning where to seek care and how to navigate 

copays, deductibles, and other complexities. 

These barriers were compounded for those 

patients with language barriers. Participants 

spoke of the need for postenrollment navigation 

and educational resources such as “coverage 

to care” classes to remove these barriers. A 

participant in Florida described the need to 

provide training in the community:

What does a copayment mean? What does 

it mean when it says co-insurance? Try to 

bridge those barriers.... Now that you have 

coverage and you don’t know how to use 

it, someone needs to help you learn how to 

use that coverage ... like Insurance 101 ... 

to think about the community at large, how 

many people have never had coverage. So 

they’re getting the coverage through the 

Affordable Care Act, but they don’t know 

what to do with it.

System capacity and access problems. In 

states expanding Medicaid, the flood of new 

enrollees overwhelmed already-taxed Medicaid 

provider networks. Participants in California 

and Colorado, two states experiencing vast 

Medicaid expansions, reported seeing long-time 

Medicaid members with disabilities crowded 

out by the flood of new enrollees. Shortages 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 39
of hearing interpreters exacerbated access for 

the deaf and hard of hearing in at least one 

state (North Dakota). Participants from Oregon, 

Colorado, and New York also noted the shortage 

of mental health providers as an access barrier 

for people with disabilities; in Colorado a 

patient may wait months before getting an 

appointment with a psychiatrist, especially with 

Medicaid.

Rural access disparities. The access barriers 

described were amplified for people with 

disabilities in rural states. Access to specialty 

providers such as psychiatrists and pediatricians 

was described as problematic to nonexistent 

in areas such as upstate New York and rural 

North Dakota. Getting Medicaid programs to 

cover care from specialists in adjacent states 

required “almost an act of Congress,” even in 

emergencies for people with disabilities in North 

Dakota. Participants noted that rural residents 

with disabilities were also more likely to face a 

“bootstraps mentality,” the attitude that they 

could manage conditions on their own, which 

made it hard for them to seek care even when 

coverage was available through the ACA.

Long-Term Services and Supports

Many states were undertaking multiple, 

significant changes in long-term services and 

supports, often making unclear what changes 

were the direct result of the ACA and what were 

the result of other initiatives. Participants noted 

a variety of changes in assessment processes, 

definitions for home and community-based 

versus institutional settings, and payment 

arrangements for employment of aides and 

family caregivers.

Dual demonstration option. In states that 

were testing models for integrating Medicaid 

and Medicare benefits for dually eligible 

beneficiaries, interviewees were ambivalent 

about the program’s impact on services and 

uncertain about People with disabilities’ 

experiences to date. Although participants 

saw coordination and integration of services 

as good “in theory,” they shared concerns 

that the managed care organizations being 

selected lacked experience delivering longterm care for people with disabilities and that 

the groups would have an incentive to reduce 

services under a capitated rate. California and 

New York had low enrollment in the program; 

this led New York to switch from an opt-in 

to an opt-out enrollment, adding a layer of 

challenges and confusion. New York participants 

described additional challenges with training 

health care providers and assisting people 

with disabilities with network issues such as 

identifying a managed care plan that will allow 

someone to retain a particular home health 

aide. Colorado’s adoption of a managed feefor-service model using primary care case 

management instead of managed care was 

viewed positively, but actual experiences of 

people with disabilities were unknown at this 

early stage. In Oregon that program was put on 

hold, and long-term care remained carved out 

of managed care, including in the new regional 

coordinated care organizations serving the 

Medicaid population.

Community First Choice option. Participants 

were also uncertain about the early impacts 

of the Community First Choice (CFC) option 

but described several implementation hurdles. 

As HCBS were added to California’s Medicaid 

plan, community-based providers experienced 

difficulties in contracting with managed care 

organizations and navigating a new business 

40 National Council on Disability
information exchange could improve information 

sharing and coordination between people with 

disabilities’ providers and care sites.

Patient-centered medical homes. Patientcentered medical home (PCMH) initiatives were 

underway in at least four states in our sample, 

and those programs also were regarded favorably 

for their case-management features, coordination 

between co-occurring physical and behavioral 

care needs, and patient-centered orientation. 

These changes in delivery of care were 

emphasized in several states where Medicaid 

expansion and other ACA provisions were not 

embraced; in the absence of expanded Medicaid 

programs, participants in Montana and Kansas 

described PCMH programs as a significant ACA 

outcome affecting people with disabilities in 

their states.

Managed care. In contrast, as discussed 

previously, participants were uniformly wary of 

systems reforms that aimed to move people 

with disabilities from traditional fee-for-service–

based programs into capitated managed-careorganizations (MCOs) or accountable care 

organizations (ACOs), regardless of whether the 

coverage was contracted via Medicaid alone 

or Medicaid/Medicare plans for dually eligible 

individuals. Participants doubted the capacity of 

most of these plans to provide continuity of care 

environment. A participant in Oregon described 

a divide between care for aged people with 

disabilities, for whom CFC changes have been 

“fairly tranquil,” and for the intellectual and 

developmental disabilities (IDD) system, which 

must “totally transform;” these accounts may 

involve CMS’s changes to HCBS, which apply 

nationwide. However, the IDD community has 

raised concerns that changes made for CFC 

purposes will undermine choice and personcentered planning that Oregon has worked to 

develop over time. Changes in Montana have 

been “problematic” for people with disabilities 

with self-directed care and have led to significant 

billing confusion for home health care providers. 

In some states where the CFC option has not 

been implemented, the disability community 

is currently advocating for it, citing long waiting 

lists for home and community-based waivers. 

Advocates in Colorado have found that the six 

percent increase in federal match tied to CFC 

has provided strong motivation for action in 

their state.

Health System Reforms

Most states had concurrent non-ACA system 

or payment reforms underway in addition to 

ACA-led changes. Some reforms were viewed 

as beneficial to people with disabilities; others 

less so.

Health information technology. Participants 

saw promise in programs to enhance health 

information technology to improve care 

coordination and access. Telemedicine and 

e-mail–based communication could allow patients 

to access providers without requiring travel to 

clinic sites, particularly useful for rural patients 

and those with transportation barriers. Improved 

electronic health record systems and health 

Health System Reforms

■ Health information technology

■ Patient-centered medical homes

■ Managed care

■ High-utilizer intervention programs

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 41
or appropriate providers to meet the specialized 

needs of people with disabilities, diminishing 

quality of care even if services were technically 

covered.

[In ACOs] we had more emergency room 

visits, more unnecessary testing ... the numbers are actually showing that we’re doing 

worse in the accountable care ... [the providers in ACOs] are not really geared toward 

people with disabilities. People with disabilities generally do best in small family practices where they have one doctor who really 

knows them, and maybe a receptionist and 

nurse who really know them, and going to a 

big clinic where they see different people all 

the time just does not work. (Colorado)

Advocates in several states noted a disappointing 

lack of transparency in contracting arrangements 

even for publicly funded plans. In New York, care 

reform had netted $6 billion in Medicaid savings, 

but disability advocates had no way of knowing 

how the savings had been produced and whether 

care for people with disabilities had suffered.

High-Utilizer Intervention Programs. 

“Hotspotting” or high-utilizer intervention 

programs also were ongoing in a couple of 

states, and Arkansas was experimenting with 

“incident-based” payments to primary care 

providers. These programs targeted patients with 

complex health care needs who have frequent 

emergency department visits or inpatient 

hospital stays; the programs implemented care 

coordination and other interventions to reduce 

unnecessary hospital utilization, to improve 

care, and to reduce health care spending for this 

population. Participants noted that people with 

disabilities who use more health care services 

than do other consumers might be more likely 

to be involved in these intervention programs. 

However, the impact of these measures on care 

for people with disabilities was yet to be seen.

Employment and Financial Impacts

The majority of participants did not perceive 

any direct impacts of the ACA on employment 

prospects for people with disabilities, but some 

noted that new coverage options might relieve 

insurance-related employment pressures. 

In several states, participants remarked that 

improving health care for people with disabilities 

is an important step, but many other employment 

barriers remain.

You have a population that has been told for 

decades, “You can’t work, you can’t work, 

you can’t work. The minute you work we’re 

taking away everything.” ... [F]or people 

who’ve been out of the workforce for all of 

this time, they aren’t going to be able to just 

jump right back in. (Colorado)

On the other hand, a participant from Montana 

described the positive impacts that the end 

of preexisting condition exclusions and newly 

available coverage options may have for working 

people with disabilities: “People are freer to 

choose employment that suits their skills and 

interest rather than shopping for employment 

based on insurance that can cover them.”

Medicaid buy-in coverage. Participants who 

were familiar with a Medicaid buy-in program 

for working people with disabilities in their state 

viewed the option positively but noted that it 

was generally underutilized. Participants in two 

states cited the availability and underutilization 

of Medicaid buy-in programs as evidence that 

employment barriers for people with disabilities 

extend beyond health care issues. Only one 

42 National Council on Disability
participant was aware of any recent changes 

in their states’ eligibility requirements for the 

Medicaid buy-in program; specifically, New York’s 

resource limits increased to $20,000 but do not 

include individual retirement accounts or other 

retirement savings.

Financial impact of asset limits. Medicaid 

expansion coverage for low-income adults 

and QHPs could have a positive financial 

impact for people with disabilities by allowing 

them to retain resources that are prohibited 

under the strict asset limits for people with 

disabilities receiving coverage based on SSI 

determination. These new coverage options 

were described as opening up opportunities 

for people with disabilities to improve their 

financial security. However, switching between 

the asset restrictions of one of these new 

coverage options and disability-related Medicaid 

eligibility can be challenging. “Some people 

get a taste of relief from expanded Medicaid, 

then find themselves under old rules again and 

have to make all of these adjustments,” said 

a participant from New York. Participants gave 

examples of this change in asset restrictions 

that affect people with disabilities who obtained 

Medicaid expansion or QHP coverage during 

the waiting period before their disability benefits 

and coverage began and for many individuals 

who become dual eligible beneficiaries at 

age 65.

Engagement of People with Disabilities 

in Planning New Programs

Stakeholder engagement processes. The 

degree to which people with disabilities and 

disability advocacy organizations were engaged 

in designing and planning new programs under 

the ACA varied across states. In Colorado, a 

participant described being actively involved in 

designing some of the changes in long-term 

services and supports programs. In other states, 

disability advocates were invited to participate 

in stakeholder meetings or to give input but did 

not see this as sufficient engagement of people 

with disabilities. A participant from California 

stated, “[There are] lots of opportunities to 

meet and talk; not as many opportunities to 

influence the outcome.” Participants in Oregon 

described the inclusion of Medicaid consumer 

members on the boards of directors and 

community advisory councils overseeing each of 

the regional coordinated care organizations, but 

they noted that although people with disabilities 

and advocates were present at meetings, their 

participation was not always facilitated effectively; 

instead, the meetings were “dominated by health 

professionals.”

Policy advocacy. In some states, 

implementation of the ACA has spurred advocacy 

within the disability community. In Arkansas, 

disability groups that have not historically worked 

closely with each other have come together to 

advocate for the adoption of the Community 

First Choice option. Participants in Montana, 

North Dakota, Kansas, and Pennsylvania 

described people with disabilities and their 

advocates’ involvement in the state legislative 

process related to ACA implementation. Each 

state’s disability community had to respond to a 

different political context, as a participant from 

Pennsylvania stated,

Because Pennsylvania not only didn’t embrace the ACA but really fought it, was one 

of the states that filed the law suit ... over 

these last couple years folks with disabilities and their advocates, organizations like 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 43
ours and lots of others ... [had] to put so 

much time and energy into ... trying to get 

the basics that could have—and we would 

say should have—been afforded under the 

ACA.... [T]here was just so much time and 

resources and energy focused on to trying 

to preserve what we have and trying to 

at least get the minimum of the Medicaid 

expansion. So we’ll never know what could 

have been had that not been the scenario, 

had we been a state where we were embracing the ACA.

Data Documenting the Experiences 

of People with Disabilities

Gaps in data collection showing the experiences 

of people with disabilities not only affect the 

current work but also future research. One 

indicator of the dearth of available information 

was how often participants asked the interview 

team for news from other states. Participants 

often noted that their interview responses 

were regrettably limited to anecdotal evidence. 

They described an informational landscape in 

which disability-related enrollment data were 

nonexistent or unobtainable.

Participants described the lack of disabilityrelated data as harmful to efforts to improve 

coverage options for people with disabilities; 

it was difficult and in some cases impossible 

to track the enrollment choices people with 

disabilities were making and their short- and 

long-term impacts on health. Although the federal 

exchange included a question on disability that 

most participants found adequate, advocacy 

organizations had been unsuccessful in accessing 

these data. Participants from Pennsylvania 

described state-specific enrollment data on 

people with disabilities as unavailable. One 

noted, “The state has not fully implemented 

the ACA the way that other states have.... Our 

[exchange] has always been federally operated ... 

so our state has been pretty hands-off in terms of 

that data.”

The development of state-based insurance 

Marketplaces was viewed as an opportunity for 

valuable data collection, but at least one state 

(California) with its own exchange had omitted 

disability-related questions from its enrollment 

process. A participant from California described 

the challenges in advocating for better data 

collection in the state-based exchange:

Because it’s a time of flux and of building 

and developing, the reality is it has been 

really hard to get attention and priority on 

issues that are of long-standing importance 

to us: issues around data collection.... [T]

here was a big coalition of language groups, 

consumer groups, health care groups, and 

we were in there all sort of making our 

pitches ... and wanting to gather demographic information. The whole IT team 

was under these intense pressures of having to be ready to go online for hundreds of 

thousands of people at a certain time.... [W]

hen they’re racing like that with set deadlines, getting sufficient attention to “Is the 

[Web site] accessible? Are you having questions about people with disabilities? Can 

you identify people with disabilities? Are 

you providing accessible formats?” It’s not 

getting [attention].

One interviewee serving on a federal advisory 

panel described how six disability-related 

questions were cut from a list of 107 being 

considered for a consumer survey on quality of 

44 National Council on Disability
QHPs, rendering disability-specific responses 

unidentifiable. Participants in Oregon also noted 

data gaps but pointed to recent state legislation 

that will create uniform data collection standards 

allowing for better identification of people with 

disabilities in the future.

Policy Recommendations Stemming 

from Key-Informant Interviews

Participants shared numerous challenges and 

successes for people with disabilities in the new 

ACA landscape. These early experiences across 

ten states with diverse ACA implementation 

choices suggest several future directions for 

policy:

Engage disability advocates as Navigators.

Many participants worked with disability 

advocacy groups that had received funds to train 

and serve as official ACA exchange Navigators. 

In their experiences, the combined value of 

disability-specific health systems knowledge and 

person-to-person contact (whether face to face or 

Policy Recommendations Stemming 

from Key-Informant Interviews

■ Engage disability advocates as Navigators.

■ Expand Navigator training.

■ Make marketplaces more accessible for 

people with disabilities.

■ Standardize marketplace information 

available to enrollees.

■ Provide health insurance education for new 

enrollees.

■ Address data collection gaps.

via phone) was immeasurable for helping clients 

with disabilities gain access to the best coverage 

options. Participants shared that Navigators 

without prior experience working for people 

with disabilities, while well-intended, would not 

have had the tools to recognize or appropriately 

advise clients with disability. Providing support for 

disability organizations to offer Navigator services 

could strengthen the effort to enroll people with 

disabilities in the coverage options that best 

meet their needs.

Expand Navigator training. Participants 

recognized that many people with disabilities 

receive enrollment assistance from Navigators 

that are not based at a disability organization, and 

these Navigators likely lack the information and 

training needed to provide adequate assistance 

to people with disabilities. Content could be 

added to the Navigator training program to help 

familiarize Navigators with some of the key 

health care issues that people with disabilities 

face and with strategies to help people with 

disabilities with important enrollment issues. 

This training could include equipping Navigators 

with a list of disability advocates in their region 

or state to whom they can connect clients with 

disability who face unusually complex enrollment 

questions. More experienced Navigators from 

disability advocacy groups also could train other 

Navigators.

Make Marketplaces more accessible for 

people with disabilities. Improvements in 

the accessibility features of state and federal 

Marketplaces could enhance enrollment 

success for people with disabilities. Participant 

descriptions of current Marketplace features 

indicate ample room for improvement in 

this area. Providing information and forms in 

accessible formats, ensuring that Web sites are 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 45
accessible, and offering chat features are a few 

changes that could be implemented by state 

and federal Marketplaces for future enrollment 

cycles.

Standardize Marketplace information available 

to enrollees. Participants frequently identified that 

people with disabilities often lacked information 

to make informed coverage decisions. Although 

some of this information applied to the general 

population as well (for example, learning whether 

a familiar provider would be covered under a 

given plan), other issues were unique to the 

disability community (for example, number of 

visits for certain therapies or coverage for specific 

equipment types). Making this information easily 

accessible through the Marketplace as well as 

presenting the information in a standardized and 

consistent format would facilitate the enrollment 

of people with disabilities in coverage. As a 

starting point, advocates helping people with 

disabilities enroll in coverage could formulate 

standard questions to be asked of plans and 

providers that would assist clients in assessing 

options, and could advocate for the inclusion of 

these standard items in information submitted 

by QHPs.

Provide health insurance education for new 

enrollees. Participants described a knowledge 

gap for new enrollees faced with understanding 

different plan features and the procedures for 

using insurance to obtain health care services. 

As suggested by one participant, “Insurance 

101” education could increase people with 

disabilities’ knowledge about private insurance 

options and cost sharing, helping them to make 

informed decisions when selecting a plan or 

using insurance for the first time. Trainings 

could address how and where to seek care and 

how to navigate copays, deductibles, and other 

complexities.

Address data collection gaps. We consistently 

heard participants emphasize the importance 

of capturing data to assess the impact of the 

ACA on people with disabilities. Participants 

highlighted the need for Marketplace enrollment 

data that allow for the identification of people 

with disabilities and thus the ability to monitor 

ACA impacts on this population. In particular, 

data related to the subpopulation of people with 

disabilities who were previously uninsured and 

gained access to coverage through Medicaid 

expansion may provide valuable insight on the 

composition and experiences of this group 

of people with disabilities who may not be 

engaged with disability services or otherwise 

identified.

46 National Council on Disability
Chapter 4. Selected State Policy Choices Important

for People with Disabilities

I

n this chapter, we describe state policy 

choices in two areas important to people with 

disabilities: Medicaid expansion, including 

decisions about ABPs, and the parameters of 

several EHBs that are particularly important to 

people with disabilities. We begin by explaining 

our methodology for developing this analysis of 

50 states and the District of Columbia and then 

discuss notable differences in policy choices 

between states. Tables showing policy choices by 

state are in the appendix.

Methodology

Appendix Table 1 shows the status of state 

Medicaid expansion decisions as of December 

2014. Information was drawn from an analysis by 

the National Academy for State Health Policy’s 

StateRefor(u)m project.84 The StateRefor(u)m 

table was missing some detailed information 

on certain states’ ABPs, and in those cases we 

referenced the CMS SPA approval letters, which 

provide detailed information on the base plan and 

the coverage of each EHB.85

Appendix Tables 2 through 4 show by state 

the amount, duration, and scope of EHBs 

that involve habilitative services, rehabilitative 

services, and DME. To analyze these benefits, 

we began with CMS’s online compilation of 

state-specific information about EHBs, including 

coverage offered by benchmark benefit plans. 

CMS developed tables for each state showing 

specific details about each EHB benefit category, 

including limits, exclusions, and explanations. 

Additionally, a CMS cover page for each state 

summarized plan information, including whether 

habilitative services were included in the 

benchmark plan’s coverage, whether the state 

defined habilitative services, and, if so, the 

state’s coverage definition. The cover page also 

provided the benchmark plan’s name, type, and 

issuer.

However, some states’ CMS tables provided 

no coverage details, or the information provided 

was insubstantial and missed many of the key 

points included in other state tables. In these 

cases, we referenced certificates of coverage, 

which set out the details of benchmark plans’ 

coverage.86 Carriers often do not provide 

certificates of coverage until after a customer 

subscribes to the plan, making these certificates 

difficult to obtain. We were able to access such 

certificates through StateRefor(u)m’s online 

compilation of certificates of coverage for 

benchmark plans, updated as of February 5, 2014. 

Though this access to coverage documents is a 

valuable resource, StateRefor(u)m has collected 

certificates of coverage for only 23 states and 

the District of Columbia. Our principal use 

of this collection involved information about 

rehabilitation services. When a state had little 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 47
or no information concerning rehabilitative 

services in its CMS table, we drew from the 

applicable certificate of coverage to provide the 

same level of basic information for each state. 

Using this two-fold method, we were able to 

gather complete information for all states except 

Minnesota, New Mexico, and South Dakota.

This approach had several limitations. 

Because regulations regarding EHB habilitative 

services changed in February 2015, some states 

have been shifting or will soon change their 

coverage to meet new criteria. However, the 

CMS summaries were originally prepared on 

the basis of 2012 plan designs. Some states 

have already changed their regulations, but the 

CMS summaries are undated so it is difficult 

to tell which of them reflect current state law. 

Additionally, there are some inconsistencies 

between the CMS cover sheets and tables; 

in some cases, the certificates of coverage 

contradicted information in the CMS documents. 

These discrepancies and our resolution of them 

are indicated in each table’s notes.

Medicaid Expansion: Benefits for 

Low-Income Adults

As originally enacted, the ACA required each 

state to expand Medicaid eligibility to all adults 

under age 65 with incomes at or below 138 

percent of the FPL. However, in June 2012 the 

U.S. Supreme Court ruled that states can opt out 

of Medicaid expansion, giving them the authority 

to accept or reject this aspect of the ACA. If a 

state expands eligibility, it can craft the terms of 

coverage within federally defined parameters.

Appendix Table 1 details the various 

approaches that states took to the expansion 

and ABP coverage. Although 20 states chose 

not to expand coverage as of the date of 

the StateRefor(u)m summary, 22 states and 

the District of Columbia opted for traditional 

expansion through SPAs. Six others have 

received demonstration waivers under Section 

1115 of the Social Security Act and are expanding 

via experimental, nontraditional systems. 

One state (Alaska) was scheduled to start its 

expansion September 1, 2015, and one state 

(Montana), has adopted the expansion and 

was awaiting federal waiver approval. Note that 

Alaska, Montana and the 20 states that did not 

expand are not listed in the table.

In states that chose to expand, newly eligible 

adults receive a package of benefits called the 

Alternative Benefit Plan (ABP). ABPs must meet 

EHB requirements, which include covering 

each of ten statutorily specified categories and 

providing parity in physical and mental health 

care coverage. The state can choose from 

several benchmark plans as the basis for ABPs. 

Some benchmark plans—for example, the 

most highly subscribed plan offered by small 

employers—are commercial, but a state can 

also opt for “secretarially approved” benchmark 

benefits, which can provide newly eligible 

adults with standard Medicaid benefits offered 

to other adults. If a state decides to align 

benefits for newly eligible adults with benefits 

for other Medicaid-eligible adults, it may need 

to adjust the latter benefits to meet EHB 

requirements.

The StateRefor(u)m analysis found that 

20 state plans drew their ABPs from the state’s 

Medicaid plan and 13 plans drew upon one 

of the qualifying commercial plans. Most of 

these plans had to be expanded to meet the 

new requirements introduced by ACA. To align 

Medicaid benefits for all adults, the ACA’s EHB 

standards required broadening benefits for 

48 National Council on Disability
Medicaid adults who had previously qualified. 

For ABPs, the most common method of meeting 

the law’s requirements was to supplement 

Medicaid with the services provided by the 

benchmark plan. However, in four state plans, 

Medicaid benefits were slightly cut back, as 

permitted by federal EHB guidelines. Many 

states explicitly mentioned that the adoption 

of Medicaid or the benchmark plan as the ABP 

was an intentional choice seeking to streamline 

the transition process when consumers moved 

between programs.

Essential Health Benefits

Another important ACA policy requires most 

individual and small-group plans87 to cover ten 

broad categories of benefits as EHBs. These 

ten categories are ambulatory patient services; 

emergency services; hospitalization; maternity 

and newborn care; mental health and substance 

use disorder services, including behavioral health 

treatment; prescription drugs; rehabilitative and 

habilitative services and devices; laboratory 

services; preventive and wellness services and 

chronic disease management; and pediatric 

services, including oral and vision care. In 

defining the details of coverage within each 

category, states can choose from among 

certain benefits packages offered by employers 

to workers and dependents. States have 

selected varying employer-based plans as their 

benchmarks, so states differ in the amount, 

duration, and scope of benefits that are required 

within broad EHB service categories.

Because many employer-based plans did 

not previously cover habilitative care, a unique 

process determines the benefits within this 

service category. In CMS’s original EHB 

regulations, if habilitative services were not 

included in the selected benchmark plan, the 

state was allowed to define the benefits provided 

in that category. If the state chose not to define 

the benefits, insurers could define the habilitative 

services they chose to cover. In February 2015, 

new regulations eliminated insurers’ ability to 

define habilitative services, instead creating a 

federal definition that applies unless the state 

issues its own definition. The federal standard 

defines habilitative services as “health care 

services that help you keep, learn, or improve 

skills and functioning for daily living.... [T]hese 

services may include physical and occupational 

therapy, speech-language pathology, and other 

services for people with disabilities in a variety 

of inpatient and/or outpatient settings.”88 New 

federal rules forbid operating habilitative services 

and rehabilitative services with a shared visit 

limit; instead, any such limits must apply 

separately to these two service categories. The 

requirement goes into effect in January 2017. The 

federal standard also requires habilitative services 

to be in parity with coverage of rehabilitative 

services. According to the information posted 

by CMS and supplemented by certificates of 

coverage as described in our earlier methodology 

Federal definition of habiltiative 

services

“health care services that help you keep, 

learn, or improve skills and functioning for 

daily living. . . . [T]hese services may include 

physical and occupational therapy, speechlanguage pathology, and other services 

for people with disabilities in a variety of 

inpatient and/or outpatient settings”

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 49
section, habilitative services are included in the 

benchmark plans of 34 states, are defined by the 

state in 11 states, and are defined exclusively by 

federal law in seven states.

Though the details of services within EHB 

categories are determined on a state-by-state 

basis, state and benchmark plans alike follow 

some general trends in habilitative, rehabilitative, 

and DME coverage. For habilitative services, 

limits range from 20 to 60 visits per year, though 

there is a wide variance as to whether the limit 

includes all types of 

therapy or is divided 

between specific 

categories. Most plans 

include, at minimum, 

physical, occupational, 

and speech therapies; 

however, Michigan 

and Oklahoma exclude 

speech therapy and 

South Carolina covers 

only physical therapy. 

The majority of states 

explicitly exclude 

vocational training, and 

nine states directly exclude maintenance therapy 

as well. The latter exclusion raises questions 

about compliance with the federal definition 

of habilitative services as including services 

that “help you keep ... skills and functioning” 

(emphasis added).

As noted earlier, 11 states do not yet comply 

with the prohibition on limits that combine 

habilitative and rehabilitative services, a 

prohibition that becomes effective on January 1, 

2017. The federally required separation of services 

is important for people with disabilities. Some 

states have apparently applied the same limits 

that previously applied to rehabilitative services 

to the new category of habilitative services, 

effectively doubling the total amount of coverage 

available within these two service categories.89

Even if the total volume of covered services does 

not increase, the new federal limit means that 

using services in one category will not diminish 

the total volume of services available in the other 

category.

Though states cover a relatively similar 

package of services, some benefit areas, including 

treatment of autism, have 

a wide variety of coverage 

structures. In Mississippi 

and North Dakota, 

autism therapies are 

explicitly excluded from 

benchmark coverage of 

habilitation, as is speech 

therapy related to autism 

in Rhode Island. Twenty 

other benchmark plans 

do not address autism at 

all. Twenty-eight states 

cover autism services 

in their benchmark plan, 

with 17 of those states listing it as a benefit 

category independent from habilitative care. 

Massachusetts and Nevada include autism 

services under habilitative services but apply 

a separate limit to the treatment of autism90

(Figure 1).

Unlike habilitative care, rehabilitation services 

have long been part of coverage plans, so the 

implementation of ACA has made less of a 

change in this service area. The US Department 

of Health and Human Services defines 

rehabilitation as “health care services that help 

a person keep, get back or improve skills and 

The majority of states explicitly 

exclude vocational training, 

and nine states directly exclude 

maintenance therapy as well. The

latter exclusion raises questions 

about compliance with the federal 

definition of habilitative services as 

including services that “help you 

keep... skills and functionin

(emphasis added)

50 National Council on Disability
functioning for daily living that have been lost 

or impaired because a person was sick, hurt or 

disabled. These services may include physical and 

occupational therapy, speech-language pathology 

and psychiatric rehabilitation services in a variety 

of inpatient and/or outpatient settings.”92

Rehabilitative coverage is similar among states 

and generally includes physical, occupational, 

and speech therapies and employs limits ranging 

from 20 to 60 visits per year. Many states also 

include pulmonary and cardiac rehabilitation in 

their benefits. To qualify for rehabilitative services 

coverage, patients in most states must have 

reasonable potential for improvement in their 

applicable conditions. Most states also end 

coverage of rehabilitative services when the 

patient regains a pre-injury or pre-illness level of 

functionality.

Other aspects of rehabilitative services 

coverage vary among states:

■ Some states require a hospital stay or 

surgery before consumers receive coverage 

of physical, pulmonary, and cardiac services.

■ Coverage may exclude certain kinds of 

rehabilitation work deemed nonessential, 

such as rehabilitation to enhance athletic or 

job-specific skills

■ In some states, new and less expansive 

limits apply to rehabilitative services when 

treatment moves from short- to long-term 

rehabilitation. Similarly, the rehabilitation 

performed postsurgery in the hospital may 

be subject to different limits than apply to 

outpatient rehabilitation, as they are listed in 

different benefit categories.

Figure 1. Number of States (including the District of Columbia) with EHBs That 

Cover Autism Services in Various Ways

a

Autism services

explicitly

excluded from

benchmark

plan, 2

Autism services

included in

habilitative 

limit, 11

Autism services

included as a

separate

benchmark

category, 17

Autism services

not mentioned

in benchmark

plan, 20

Source: Center for Consumer Information and Insurance Oversight.91

Note: Figure 1 depicts the number of states (including the District of Columbia) adopting each of four strategies 

regarding coverage of services related to autism: autism services explicitly excluded from benchmark plan (two 

states, four percent of all states), autism services included in habilitative limit (11 states, 22 percent), autism 

services included as a separate benchmark category (17 states, 34 percent), and autism not mentioned in 

benchmark plan (20 states, 40 percent).

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 51
■ Depending on the state, rehabilitative 

services coverage may exclude part of the 

three generally accepted phases of cardiac 

and pulmonary rehabilitation.93 Altogether, 

18 states completely exclude one or both of 

these therapies.

DME across states follows a pattern similar to 

that of rehabilitation, including the same general 

services with variations in the specific pieces of 

equipment covered and the frequency at which 

they will be replaced. Most states limit coverage 

to devices and supplies that are primarily for 

medical use, not useful in the absence of illness 

or injury, and able to withstand repeated use. 

DME coverage typically excludes anything above 

standard grade and does not cover replacements 

or upgrades due to technological advances. If an 

item can either be rented or purchased, insurers 

typically decide on a case-by-case basis which 

option is covered. While prosthetics are usually 

included, most orthotics are not. Glasses, dental 

braces, and anything that must be surgically 

implanted are covered by other benefit categories 

in most plans, but the coverage varies among 

states.

52 National Council on Disability
Chapter 5. Recommendations for Future Researc

T

he analysis in this report brings together 

early evidence of the ACA’s impact on 

people with disabilities by summarizing 

existing studies and reports, describing findings 

from interviews with key informants, and 

itemizing selected state policy choices. Perhaps 

equally important, this report also shows the 

tremendous need for research focused on people 

with disabilities’ experience with the ACA. In 

this chapter, we outline our recommendations 

for future research that follow from our analysis. 

Some questions can be readily addressed using 

national surveys that contain measures to identify 

people with disabilities; other future research 

questions require the collection of new data, for 

example, in the form of focus group interviews or 

small-scale, targeted surveys such as the HRMS.

We begin by noting that several major surveys 

that provide information about health coverage 

and include measures to identify people with 

disabilities already have or will make available 

data showing coverage in 2014, the first year 

that the major coverage expansion and insurance 

reform provisions of the ACA became effective. 

All of these surveys contain questions about 

disability, as required by ACA Section 4302 and 

summarized by Livermore et al, and about health 

insurance coverage.94 As mentioned, MEPS-HC 

2014 and early release NHIS data for 2014 are 

already available. The 2014 ACS is scheduled to 

be released on September 17, 2015 and the CPS 

ASEC for 2014 is likely to be realized in January 

2016, assuming the release date is similar to that 

of the 2013 CPS AHEC. Another national survey 

not mentioned thus far with measures of health 

coverage and disability is the Survey of Income 

and Program Participation.95 This survey’s data for 

2014 will be released by the end of 2015.96

The availability of surveys makes it feasible 

for researchers to prioritize two areas of work 

recently identified in a groundbreaking paper 

recognized by the CDC:97

■ Using “existing data sets to compare health 

outcomes and health differences across 

multiple data systems, and to disaggregate 

disability into different functional categories 

(for example, vision, hearing, mobility, 

problem solving or concentration)”; and

■ Having health service and public health 

researchers “routinely analyze their data by 

disability status to determine when disability 

is important as a demographic characteristic 

variable for the focus of their study.”98

The key point to emphasize is that health 

services researchers, who are accustomed 

to analyzing data with tabulations that involve 

income, gender, and race or ethnicity, need 

to incorporate into those analyses tabulations 

that address people with disabilities. A major 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 53
new wave of ACA-related research is almost 

certain to begin in the coming months. A key 

unresolved question is the extent to which 

that research will address the needs of people 

with disabilities. Health care researchers, 

public policy analysts, and the broader disability 

community need to ensure that research that 

focuses on people with disabilities is adequately 

represented in the emerging ACA research.

In what follows, we present major research 

topic for such a people with disabilities-centric 

research agenda.

Documentation of coverage changes for 

people with disabilities. Little academic research 

describes health insurance coverage gains for 

people with disabilities resulting from the ACA’s 

major provisions, including Medicaid expansion 

and Marketplaces. Future research should track 

the progress in people with disabilities’ coverage 

due to these provisions and examine differences 

in coverage gains for people with different types 

of disability. Possible research questions include

■ How has health insurance coverage 

increased for people with disabilities 

since the implementation of the Medicaid 

expansion and Marketplaces? How have 

different subgroups (for example, people 

with physical disabilities, vision limitations, 

hearing limitations, developmental or 

intellectual disabilities, and mental health 

disabilities) fared?

■ How have health insurance coverage 

increases for people with disabilities 

varied by

❍ Income relative to the FPL (for example, 

0 percent to 99 percent, 100 percent to 

138 percent, 139 to 400 percent, and 401 

percent plus) and

❍ Other demographic factors, including 

age, race or ethnicity, education level, 

and gender?

■ How have state decisions about ACA 

implementation (for example, whether to 

expand Medicaid) affected health insurance 

coverage increases for people with 

disabilities?

This type of research could be undertaken with 

data from Census surveys such as the ACS, NHIS, 

CPS ASEC, and MEPS-HC (and, if resources 

permit, targeted surveys such as HRMS).

Factors contributing to differential coverage 

gains. Other important research would address 

possible reasons that differential coverage gains 

have been realized by people with disabilities 

(compared with other consumers) and key 

subgroups of people with disabilities. Possible 

research questions involve the impact on 

enrollment of

■ Limited accessibility of Marketplace Web 

sites and other features of Marketplace 

administration, including

❍ Call centers and

❍ The provision of information particularly 

relevant to people with disabilities;

■ Different features of subsidized QHP 

coverage, including

❍ Benefit limitations,

❍ Premium costs,

❍ Deductibles and other out-of-pocket costsharing, and

❍ Limited provider networks;

■ Medicaid enrollment backlogs and other 

enrollment system “glitches”; and

54 National Council on Disability
■ The availability of Navigators and other 

application assisters, including

❍ The total supply of application assistance 

resources, include those focused at 

Medicaid as well as QHPs;

❍ The participation of disability groups in 

offering Navigators and other application 

assistance services; and

❍ Training for Navigators and other 

application assisters not affiliated with 

disability groups.

Focus groups with people with disabilities could 

help to address these questions, along with keyinformant interviews like those conducted for 

this report.99 Such additional qualitative research 

would not only broaden the experiential base of 

analysis, but it could also highlight developments 

later in the evolution of ACA implementation, 

compared with interviews for this project. Some 

of these issues could also be the focus of more 

targeted surveys.

Documentation of other changes for people 

with disabilities involving access to care.

National survey data sets include substantial 

information beyond coverage. Topics covered 

include financial barriers to care; whether survey 

respondents have delayed seeking or failed to 

receive necessary care and, if so, the financial 

and other factors underlying such choices; 

whether respondents have a regular source of 

care; utilization of various services, and so forth. 

All of these topics could become the subject of 

analysis, with researchers examining changes 

in 2014, including those affecting people with 

disabilities as a whole as well as the subsets of 

people with disabilities we have described.

Factors contributing to differential access 

gains among people with disabilities. Building 

on national survey results, qualitative research 

strategies could also be important in exploring 

people with disabilities’ experiences obtaining 

health care, addressing issues raised by the 

interviews conducted for this paper. Potential 

research questions involve the impact of the 

following on access to care:

■ Limitations on EHBs, including the impact 

on QHP coverage within benefit categories 

that include

❍ Habilitation and rehabilitation services,

❍ DME,

❍ Prescription drugs, and

❍ Treatment of mental health and 

substance use disorders;

■ Out-of-pocket cost-sharing amounts charged 

by QHPs and nontraditional Medicaid 

expansions;

■ State decisions about Medicaid ABPs, 

including the scope of covered services and 

consumer information about medical frailty 

exemptions;

■ Public education strategies involving health 

insurance literacy and “coverage to care” 

initiatives; and

■ The previously noted subgroups of people 

with disabilities, including variations by 

disability type, income, education level, and 

state policy choices.

In addition to focus groups and key-informant 

interviews, future researchers could explore 

these questions with targeted surveys.

Evaluation of LTSS options. Many people 

with disabilities are affected by LTSS changes, 

including those involving dual demonstrations, 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 55
CFC, and, above all, increased use of private, 

managed-care plans to furnish LTSS. Important 

questions for these options include:

■ How did health care services provided 

to people with disabilities change after 

implementation of these options? What 

services were furnished? How robust were 

provider networks, taking into account 

expertise in people with disabilities as 

well as all dimensions of accessibility? Did 

performance on quality of care metrics 

change? Were there important differences in 

services provided across states?

■ Were changes observed in beneficiaries’ 

use of “checks and balances,” such as 

appeals, grievances, and complaints?

■ How did spending on LTSS change?

■ How many people with disabilities were 

affected by these changes? What were 

their characteristics? How did people with 

disabilities experience these changes? 

What were the gains and losses? Were 

people with disabilities with certain types of 

disabilities particularly affected?

Focus group interviews with people with 

disabilities and key-informant interviews might be 

useful data sources to address these questions. 

In addition, researchers could analyze data 

gathered by states and health plans, including 

information about services furnished and quality 

of care.

Analysis of administrative data involving 

people with disabilities. Consumers who apply 

for QHP subsidies must answer, on national 

application forms (but not forms in all state 

Marketplaces) questions about limitations 

they experience that may signal the presence 

of disabilities. Researchers could use those 

answers to analyze people with disabilities’ 

enrollment into QHPs and insurance affordability 

programs. Moreover, CMS is now phasing in a 

new Transformed Medicaid Statistical Information 

System, which includes comprehensive data 

about Medicaid enrollees, their eligibility, 

services, costs, and characteristics, including an 

identification of people with disabilities within 

all eligibility categories. This system could prove 

a rich source of data that researchers could use 

to explore Medicaid coverage of people with 

disabilities in the future.

56 National Council on Disability
Appendix

Appendix Table 1. Medicaid Alternative Benefit Plans (ABPs)

State

Type of 

Expansion

Type of plan on which ABP is 

based

Commercial Plan Name Medicaid Commercial

Arizona Traditional Yes No N/AArkansas Waiver Yes No N/ACalifornia Traditional No Yes Standard Blue Cross/Blue Shield Preferred Provider 

Option-FEHBP

Colorado (two options offered)

Traditional Yes Yes Kaiser Foundation Health Plan of Colorado Deductible 

HMO 1200D

Connecticut Traditional Yes No N/ADistrict of Columbia Traditional Yes No N/ADelaware Traditional Yes No N/AHawaii Traditional Yes No N/AIllinois* Traditional No Yes Blue Cross Blue Shield BlueAdvantage EntrepreneurIndiana (1)** Proposed Waiver No Yes Advantage 1001Indiana (2)*** Proposed waiver No Yes Advantage 1001Iowa (1) Waiver No Yes Iowa Wellness PlanIowa (2) Waiver No Yes Iowa Marketplace Choice PlanKentucky Traditional Yes No N/AMaryland Traditional Yes No N/AMassachusetts (1)  Traditional Yes No N/AMassachusetts (2)** *** Traditional Yes No N/AMichigan Waiver No Yes Priority Health HMOMinnesota Traditional Yes No N/ANevada Traditional Yes No N/A

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 57
Appendix Table 1. (continued)

State

Type of 

Expansion

Type of plan on which ABP is 

based Commercial Plan Name

New Hampshire Waiver No Yes Matthew Thornton Blue Health PlanNew Jersey Traditional Yes No N/ANew Mexico Traditional No Yes Expansion Alternative Benefit PlanNew York Traditional No Yes Standard Blue Cross Blue Shield Federal EmployeeNorth Dakota Traditional No Yes Sanford Health PlanOhio Traditional Yes No N/AOregon Traditional Yes No N/APennsylvania Waiver No Yes Plans vary by region******Rhode Island Traditional Yes No N/AVermont Traditional Yes No N/AWashington Traditional Yes No N/AWest Virginia Traditional Yes No N/A

Notes: In Illinois, the state benchmark plan is used as the ABP. However, any services provided by the benchmark plan that are not covered by Medicaid are excluded from coverage. **Health Indiana Plan (HIP) Basic Plan; ***HIP Plus Plan. Enrollment in HIP Plus is dependent on enrollees’ monthly contributions to their Personal Wellness and Responsibility (POWER) account. If they contribute, they remain eligible for HIP Plus, which offers extended services and fewer copays. If not, coverage is reduced to HIP Basic;  MassHealth Standard Plan; ** ***MassHealth Care Plus, which is a limited version of Medicaid, available only to people over age 21; ******Under the waiver, Pennsylvania has been divided into nine regions, each of which has at least two Primary Care Options (PCOs), which newly eligible adults can choose between. However, Pennsylvania’s current governor has announced plans to transition to a traditional Medicaid expansion.

58 National Council on Disability
Appendix Table 2. Essential Health Benefit (EHB) Coverage of Habilitative Services and Devices

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

Alabama Benchmark 30 visits per year for habilitative and rehabilitative services combined. Includes physical 

therapy, speech therapy, and occupational therapy.

Yes

Alaska Benchmark 45 visits per year for habilitative and rehabilitative services combined. Excludes 

recreational, vocational, or educational therapy, exercise, or maintenance-level programs; social or cultural therapy; treatment that is not actively engaged in by the ill, injured, or impaired member; gym or swim therapy; custodial care. Applicable deductible and coinsurance apply.

Yes

Arizona Federal Federally defined coverage NoArkansas State Defined by the state as services provided for a person to attain and maintain a 

skill or function that was never learned or acquired and is necessary due to a disabling condition. Coverage includes physical, occupational, and speech therapies, developmental services and durable medical equipment for developmental delay, developmental disability, developmental speech or language disorder, developmental coordination disorder and mixed developmental disorder. Autism spectrum disorders are included under this coverage.

No

California Benchmark 

and State

Defined by the state as medically necessary health care services and health care devices that assist an individual in partially or fully acquiring or improving the skills and functioning that are necessary to address a health condition, to the maximum extent practical. These services address the skills and abilities needed for functioning in interaction with an individual’s environment. Excludes respite care, day care, recreational care, residential treatment, social services, custodial care, or education services of any kind, including, but not limited to, vocational training. Certain limitations on types of caregivers for behavioral health treatment as described in H&S Code section 1374.73. Coverage includes treatment for behavioral health treatment for autism and related disorders. Habilitative services shall be covered under the same terms and conditions applied to rehabilitative services under the policy.

No

Colorado State 20 visits per year for each physical, occupational, and speech therapies. Defined by the 

state as services that help a person retain, learn, or improve skills and functioning for daily living that are offered in parity with, and in addition to, any rehabilitative services offered in Colorado’s EHB benchmark plan. Parity in this context means of like type and substantially equivalent in scope, amount, and duration.

No

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 59
Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

Connecticut* Benchmark Services addressing habilitation needs caused by autism are covered under “Autism 

Services” and not “Habilitation Services.”

No

Delaware*** State 30 visits per year for physical and occupational therapy combined. A separate 30 visits 

per year for speech therapy. Delaware requires that coverage for habilitative services be on parity with those for rehabilitative services.

No

DC Benchmark Defined in DC Code Section 31–3272, health insurers must provide children 21 and 

under with habilitative services not more restrictive than coverage provided for any other illness, condition, or disorder for purposes of determining deductibles, benefit year or lifetime durational limits, benefit year or lifetime dollar limits, lifetime episodes or treatment limits, copayment and coinsurance factors, and benefit year maximum for deductibles and copayments and coinsurance factors. Includes occupational therapy, physical therapy, and speech therapy for the treatment of a child with a congenital or genetic birth defect to enhance the child’s ability to function.

No

Florida Federal Federally defined coverage NoGeorgia Benchmark 20 visits per year for physical and occupational therapies combined. A separate 20 

visits per year for speech therapy. Benefit limits are shared between rehabilitation and habilitation services. Excludes hypnotherapy, vestibular rehabilitation, primal therapy, chelation therapy, rolfing, psychodrama, megavitamin therapy, purging, bioenergetic therapy, cognitive therapy, electromagnetic therapy, orthoptics, salabrasion; chemosurgery and other such skin abrasion procedures associated with the removal of scars, tattoos, actinic changes for acne treatment; smoking cessation programs, services, and supplies, treatment of nicotine addiction; self-help, biofeedback, recreational, educational or sleep therapy or other forms of self-care or self-help training and any related diagnostic testing. Includes treatment for autism spectrum disorders.

Yes

Hawaii* Benchmark Coverage not detailed. No

60 National Council on Disability
(continued)

Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

Idaho Benchmark 20 visits per year for habilitative and rehabilitative services combined. Habilitation 

services payment is limited to physical, speech, and occupational therapy services related to developmental and rehabilitative care, with reasonable expectation that the services will produce measurable improvement in the Insured’s condition in a reasonable period of time. Services are for the purpose of restoring certain functional losses due to disease, illness or injury only and do not include maintenance services.

Yes

Illinois Benchmark Habilitative services apply only to treatments for congenital, genetic, or early acquired 

disorders. Applicable only if a physician has diagnosed the congenital, genetic, or early acquired disorder; the treatment is administered by a licensed speech-language pathologist, audiologist, occupational therapist, physical therapist, physician, licensed nurse, optometrist, licensed nutritionist, clinical social worker, or psychologist with a physician referral; and the treatment is medically necessary and therapeutic and benefits are the same as those for any other condition. Excludes services that are solely educational in nature.

No

Indiana Benchmark 20 visits per year for habilitative and rehabilitative services combined. Separate 

20-visit limits for each physical therapy, occupational therapy, and speech therapy. Excludes maintenance therapy to delay or minimize muscular deterioration in patients suffering from a chronic disease or illness; repetitive exercise to improve movement, maintain strength, and increase endurance (including assistance with walking for weak or unstable patients); range of motion and passive exercises that are not related to restoration of a specific loss of function but are for maintaining a range of motion in paralyzed extremities; general exercise programs; diathermy, ultrasound, and heat treatments for pulmonary conditions; diapulse; work hardening; diversional, recreational, vocational therapies (e.g., hobbies and crafts); therapy to improve or restore functions that could be expected to improve as the patient resumes normal activities again; general exercises to promote overall fitness and flexibility; therapy to improve motivation; suction therapy for newborns (feeding machines); soft tissue mobilization (visceral manipulation or visceral soft tissue manipulation), augmented soft tissue mobilization, myofascial; adaptions to the home such as rampways, door widening, automobile adaptors, kitchen adaptation, and other types of similar equipment; home programs and ongoing conditioning and maintenance for cardiac rehab; pulmonary rehabilitation in the acute inpatient rehabilitation setting; admission to a hospital mainly for physical therapy; long-term rehabilitation in an inpatient setting.

Yes

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 61
Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

Iowa Benchmark Includes services for congenital disorders and developmental delays. Excludes therapies 

rendered primarily for job training and therapy services related to general conditioning of the patient. Any habilitation not related to developmental delay is not covered.

No

Kansas State 90 visits per year, including speech, occupational, and physical therapy. Parity with 

rehabilitative services.

No

Kentucky Benchmark 20 visits per year for each physical, occupational, and speech therapy. Limits are shared 

between habilitation and rehabilitation services.

Yes

Louisiana** Benchmark Rehabilitative care benefits will be available for services provided on an inpatient or 

outpatient basis, including services for occupational therapy, physical therapy, speechlanguage pathology therapy, and chiropractic services. The member must be able to tolerate a minimum of three hours of active therapy per day. An inpatient rehabilitation admission must be authorized before the admission and must begin within 72 hours following the discharge from an inpatient hospital for the same or similar condition. Day rehabilitation programs for rehabilitative care may be authorized in place of inpatient stays for rehabilitation. Day rehabilitation programs must be authorized before beginning the program and must begin within 72 hours following discharge from an inpatient admission for the same or similar condition. Excludes visual therapy, lifestyle or habit changing clinics or programs, recreational therapy, therapy primarily to enhance athletic abilities, inpatient pain rehabilitation and pain control programs.

No

Maine Benchmark 60 visits per year for speech, occupational, and physical therapies combined. Limits are 

shared between habilitation and rehabilitation. Includes respiratory therapy and cardiac rehabilitation. Excludes health club and health spa memberships, exercise equipment, physical fitness instructor or personal trainer, charges for activities, equipment, or facilities used for developing or maintaining physical fitness, even if ordered by a physician; treatments such as massage therapy, paraffin baths, hot packs, whirlpools, or moist or dry heat applications unless in conjunction with an active course of treatment; maintenance services, treatments or therapy; speech therapy benefits for deficiencies resulting from mental retardation and/or dysfunctions that are self-correcting, such as language treatment for young children with natural dysfluency or developmental articulation errors; vision therapy, including treatment such as vision training, orthoptics, eye training, or eye exercises.

Yes

62 National Council on Disability
Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

Maryland Benchmark 30 visits per year for each physical, speech, and occupational therapies for age 19 

and above. Covers members age 19 and above in parity with benefits covered for rehabilitative services.For members from birth to age 19, habilitative services means services, including occupational, physical, and speech therapies, orthodontics, oral surgery, otologic and audiological therapy for the treatment of children with congenital and genetic birth defects to enhance the child’s ability to function.

No

Massachusetts Benchmark 60 visits per year. Includes outpatient physical and occupational therapy. No limit applies 

to autism, home health care, and speech/hearing disorders

No

Michigan State Defined by the state as health care services that help a person keep, learn, or improve 

skills and functioning for daily living. Examples include therapy for a child who isn’t walking or talking at the expected age. Includes physical and occupational therapy, speech-language pathology, and other services for people with disabilities. Habilitative services encompass many types of services, including but not limited to applied behavioral analysis (ABA) for the treatment of autism spectrum disorder. ABA includes the design, implementation, and evaluation of environmental modifications, using behavioral stimuli and consequences, to produce significant improvement in human behavior, including the use of direct observation, measurement, and functional analysis of the relationship between environment and behavior.

No

Minnesota Benchmark Coverage not detailed. NoMississippi Benchmark 20 visits per year for physical and occupational therapy combined, a separate 20 visits 

for speech therapy. Covered as defined by Rehabilitation Services, which includes the coordinated use of medical, social, educational, or vocational services beyond the acute care stage of disease or injury for the purpose of upgrading the physical functional ability of a patient so that the patient may independently carry out ordinary daily activities. Excludes job training therapies; pulmonary rehabilitation; speech therapy for learning disabilities and developmental problems.

No

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 63
Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

Missouri Benchmark 20 visits per year for each physical, occupational, and speech therapy. Limits are shared 

between habilitation and rehabilitation services. Excludes maintenance therapy to delay or minimize muscular deterioration in patients suffering from a chronic disease or illness; repetitive exercise to improve movement, maintain strength, and increase endurance (including assistance with walking for weak or unstable patients); range of motion and passive exercises that are not related to restoration of a specific loss of function but are for maintaining a range of motion in paralyzed extremities; general exercise programs; diathermy, ultrasound and heat treatments for pulmonary conditions; diapulse; work hardening; activity supplies (looms, ceramic tiles, leather, utensils); therapy to improve or restore functions that could be expected to improve as the patient resumes normal activities again; general exercises to promote overall fitness and flexibility; therapy to improve motivation; suction therapy for newborns (feeding machines); soft tissue mobilization (visceral manipulation or visceral soft tissue manipulation), augmented soft tissue mobilization, myofascial; adaptions to the home such as rampways, door widening, automobile adaptors, kitchen adaptation ,and other types of similar equipment; admission to a hospital mainly for physical therapy; long-term rehabilitation in an inpatient setting; services, supplies, and equipment for gastric electrical stimulation, hippotherapy, intestinal rehabilitation therapy, prolotherapy, recreational therapy, and sensory integration therapy.

Yes

Montana** Benchmark $50,000 for ABA services for members 0 through eight years of age and $20,000 for 

ABA services for members nine through 18 years of age. Includes specialized, intense, and comprehensive therapy programs and treatment services including but not limited to physical, occupational, and speech therapy provided by a multidisciplinary team for treatment of an injury or physical deficit. A Rehabilitation Therapy program is provided by a rehabilitation facility in an inpatient care or outpatient setting; provided under the direction of a qualified physician and according to a formal written treatment plan with specific goals; designed to restore the patient’s maximum function and independence; and medically necessary to improve or restore bodily function, and the member must continue to show measurable progress. For Autism Spectrum Disorders, 

64 National Council on Disability
Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

covered services include professional counseling and guidance services and treatment programs; ABA (discrete trail training, pivotal response training, intensive intervention programs, and early intensive behavioral intervention); medications; psychiatric or psychological care; and therapeutic care provided by a speech-language pathologist, audiologist, occupational therapist, or physical therapist. Excludes custodial care, diagnostic admissions, maintenance, nonmedical self-help, or vocational educational therapy, social or cultural rehabilitation, learning and developmental disabilities, and visual, speech, or auditory disorders because of learning and developmental disabilities.

No

Nebraska Benchmark Excludes therapies rendered primarily for job training. NoNevada State $36,000 per year for coverage of autism spectrum disorders, 60 visits per year for 

outpatient habilitation services.

No

New Hampshire

Benchmark 20 visits per year. Limit is shared between habilitation and rehabilitation services. 

A separate 20 visits per year applies to physical, occupational, and speech therapy. Excludes ongoing or lifelong exercise and education programs intended to maintain fitness, including voice fitness, or to reinforce lifestyle changes, including lifestyle changes affecting the voice; voice therapy and vocal retraining; preventive therapy; therapy provided in a group setting; educational reasons; therapy for developmental disabilities, except for “early intervention services”; sport, recreational, or occupational reasons and for health club or spa memberships, exercise equipment, physical fitness instructor or personal trainer, or any other charges for activities, equipment, or facilities used for developing or maintaining physical fitness, even if ordered by a physician; physical therapy for TMJ disorders; rehabilitation services primarily intended to improve the level of physical functioning for enhancement of job, athletic, or recreational performance; work hardening programs and programs for general physical conditioning.

Yes

New Jersey Benchmark 30 visits per year for physical and occupational therapy combined. A separate 30 visits 

per year for speech, physical, and occupational therapy due to autism or developmental disabilities. Habilitation services are subject to the limits applicable to rehabilitation services, other therapies, services, and supplies. Habilitations as provided through rehabilitation services are covered. Includes hearing aids as prescribed by a physician for patients 15 years of age and younger; speech, physical, and occupational therapy treatment of diagnosis of autism or developmental disability including ABA (need not be restorative) Therapy received through early intervention services does not count toward annual limit.

No

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 65
Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

New Mexico Benchmark Coverage not detailed. NoNew York State 60 visits per condition per lifetime combined. Includes physical, speech, and 

occupational therapies. Habilitative services are at parity with the rehabilitative benefit in the outpatient setting only. New York does not consider the post hospitalization and postsurgical requirements for rehabilitative services to be requirements for habilitative services.

No

North Carolina Federal Federally defined coverage NoNorth Dakota* Benchmark 30 treatments per year. NoOhio**** State 20 visits per year of each speech and occupational therapy, 30 visits per year of mental 

or behavioral health services for patients diagnosed on the Autism Spectrum who are under the age of 21. Habilitative services benefits are determined by individual plans and must include, but are not limited to, habilitative services to children from birth to age 21 diagnosed on the Autism Spectrum, which at a minimum includes speech and language therapy; clinical therapeutic intervention defined as therapies supported by empirical evidence such as ABA, provided by or under the supervision of a professional who is licensed, certified, or registered by an appropriate agency of this state to perform the services in accordance with a treatment plan, 20 hours per week; and mental or behavioral health outpatient services performed by a licensed psychologist, psychiatrist, or physician to provide consultation, assessment, development, and oversight of treatment plans.

No

Oklahoma Benchmark 25 visits per year combined with rehabilitative physical, occupational, and manipulative 

therapy.

No

Oregon  State Defined by the state to require eligibility, medical necessity, preauthorization, provider 

credentialing and accreditation standards, subject to carrier-specific requirements. When medically necessary for maintaining, learning, or improving skills and function for daily living, benefits include services provided by a licensed physical or occupational therapist, speech-language pathologist, physician, or other practitioner licensed to provide physical, occupational, or speech therapy. Services must be prescribed in writing by a licensed

66 National Council on Disability
Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

physician, dentist, podiatrist, nurse practitioner, or physician assistant and include site, modality, duration, and frequency of treatment. Only treatment of neurologic conditions (e.g., stroke, spinal cord injury, head injury, pediatric neurodevelopmental problems, and other problems associated with pervasive developmental disorders for which rehabilitative services would be appropriate for children under 18 years of age) may be considered for additional benefits, not to exceed 30 visits per condition, when criteria for supplemental services are met. Speech therapy only allowed to correct stuttering, hearing loss, peripheral speech mechanism problems, and deficits due to neurological disease or injury. 30 visits per year for speech therapy. Excludes functional capacity evaluations, work hardening programs, vocational habilitation, community reintegration services, driving evaluations and training programs, motion analysis including videotaping and 3-D kinematics, dynamic surface and fine wire electromyography, including physician review.

No

Pennsylvania Federal Federally defined coverage NoRhode Island State Required by the state to be comprehensive and measured as per member per month 

cost of rehabilitation services covered under the plan. Issuer is required to attach an exhibit that identifies the habilitative services covered by the plan, an actuarial memorandum estimating the per member per month cost of the habilitative and rehabilitative services covered, and includes in the actuarial memo the calculation and analysis used to develop the identified cost. Excludes maintenance therapy.

No

South Carolina Federal 30 visits per year for physical therapy. Includes only physical therapy. NoSouth Dakota Benchmark Coverage not detailed. No

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 67
Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

Tennessee**  Benchmark 20 visits per year. Includes outpatient, home health, or office therapeutic and 

rehabilitative services that are expected to result in significant and measurable improvement in your condition resulting from an acute disease, injury, autism in children under age 12, or cleft palate. Services must be performed by or under the direct supervision of a licensed therapist, upon written authorization of the treating practitioner. Therapeutic/rehabilitative services include physical therapy, speech therapy for restoration of speech, occupational therapy, manipulative therapy, and cardiac and pulmonary rehabilitative services. Speech therapy is covered only for disorders of articulation and swallowing resulting from acute illness, injury, stroke, autism in children under age 12, or cleft palate. The limit on the number of visits for therapy applies to all visits for that therapy, whether received in a practitioner’s office, outpatient facility, or home health setting; services received during an inpatient hospital, skilled nursing, or rehabilitative facility stay are not subject to the therapy visit limits. Excludes treatment beyond what can reasonably be expected to significantly improve health, including therapeutic treatments for ongoing maintenance or palliative care; enhancement therapy that is designed to improve your physical status beyond pre-injury or -illness state; complementary and alternative therapeutic services; modalities that do not require the attendance or supervision of a licensed therapist; duplicate therapy; behavioral therapy, play therapy, communication therapy, and therapy for self-correcting language dysfunctions as part of speech, physical, or occupational therapy programs. Behavioral therapy and play therapy for behavioral health diagnoses may be covered under the Behavioral Health Rider (if applicable).

No

Texas Benchmark 35 visits per year, in parity with rehabilitation services. NoUtah Benchmark 20 visits per year. Limit is shared between habilitation and rehabilitation services. 

Includes physical, speech, occupational therapy, and habilitative services.

Yes

Vermont* Benchmark Includes autism coverage from birth to age 6 years per Vermont state mandate. No

68 National Council on Disability
Appendix Table 2. (continued)

State

Source of 

definition Details of Coverage

Limit Combines 

Habilitative and 

Rehabilitative 

Services?

Virginia Benchmark 30 visits per year for physical and occupational therapy combined. Limit shared between 

habilitative and rehabilitative services. Includes physical, occupational, and speech therapy, respiratory therapy and cardiac rehabilitation. Excludes physical or occupational therapy to maintain or preserve current function if there is no chance or improvement or reversal; group or individual exercise classes or personal training sessions; recreational therapy including but not limited to sleep, dance, arts, crafts, aquatic, gambling, and nature therapy.

Yes

Washington Benchmark 25 visits per year for physical, occupational, and speech therapies combined. In parity 

with rehabilitative services.

No

West Virginia Federal Federally defined coverage NoWisconsin* Benchmark Coverage not detailed NoWyoming Federal Federally defined coverage No

Notes*These states’ benefit summaries indicate that habilitative care is covered by their benchmark plans. However, the cover sheet provided by CMS states that habilitative services are neither included in the benchmark nor defined by the state.**The habilitative benefits descriptions for these states contain language that seems to address rehabilitation, not habilitation. It appears that they simply copied language from the rehabilitative services category. Such copying may have been intended to provide parity with rehabilitation coverage.***This state’s benefit summary indicates that habilitative care is not covered. However, the CMS cover sheet states that habilitative services are covered by either the Benchmark plan or state definition.****The benefit summaries reference pre-February 2015 statutes allowing insurance companies to define habilitative services if not defined by the benchmark plan or the state.

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 69
Appendix Table 3. Essential Health Benefit (EHB) Coverage of Rehabilitative Services and Devices

State Details of Coverage

Alabama* 30 visits per year for physical, speech, and occupational therapies combined. Limit shared between habilitative and 

rehabilitative services.

Alaska 45 visits per year. Limit is shared between habilitative and rehabilitative services. Excludes recreational, vocational, or 

educational therapy, exercise, or maintenance-level programs; social or cultural therapy; treatment that isn’t actively engaged in by the ill, injured, or impaired member; gym or swim therapy; and custodial care. Applicable deductible & coinsurance apply.

Arizona 60 visits per year of physical, occupational, speech, chiropractic, pulmonary, and cardiac therapies combined.Arkansas 60 visits per year of physical, occupational, speech, and chiropractic therapies combined. Cardiac rehabilitation sessions 

are limited to 36 visits per year. Pulmonary rehabilitation therapy is also covered.

California Includes physical, occupational, and speech therapies; pulmonary and cardiac therapies are also covered.Colorado 20 visits per year of each physical, occupational, and speech therapies. Pulmonary therapy is also covered.Connecticut 40 visits per year for physical, speech, and occupational therapies combined. Pulmonary and cardiac therapies are 

covered under separate benefit categories. Includes short-term physical, occupational, and speech therapy necessary to restore a function lost through or to eliminate an abnormal function that has developed due to injury or illness; postoperative physical therapy for temporomandibular joint (TMJ) dysfunction surgery is covered when the TMJ surgery is covered under this plan, is obtained during the 90-day period beginning on the date of the covered TMJ surgery, and preauthorized as part of the surgical procedure. Excludes speech therapy for developmental speech delays, stuttering, lisps, and other non–injury- or non–illness-related speech impediments. These are not covered, except as provided in the “Autism Services” or “Birth To Three Program (early intervention services)” provisions of “Other Outpatient Services” subsection (c); medically necessary short-term outpatient rehabilitative therapy, including those services rendered at a day program facility and in an office.

Delaware 30 visits per year for physical and occupational therapies combined, 30 visits per year for speech therapy, 30 consecutive 

days per year for cognitive therapy, and three sessions per week for three months for cardiac therapy.

DC Includes occupational, physical, speech, pulmonary, and cardiac therapies.Florida 35 visits per year. Includes speech therapy for child cleft lip and cleft palate; outpatient cardiac, occupational, physical, 

speech, and massage therapies in the home health care, hospital, and skilled nursing facility setting.

Georgia 20 visits per year for physical and occupational therapies combined. Separate 20 visits for speech therapy. Separate 

20 visits for respiratory therapy. Limits are shared between habilitation and rehabilitation services. Includes physical, occupational, speech, and respiratory therapy, and cardiac rehabilitation. Excludes hypnotherapy, vestibular rehabilitation, primal therapy, chelation therapy, rolfing, psychodrama, megavitamin therapy, purging, bioenergetics therapy, cognitive

70 National Council on Disability
Appendix Table 3. (continued)

State Details of Coverage

therapy, electromagnetic therapy, orthoptics, salabrasion, chemosurgery and other such skin abrasion procedures associated with the removal of scars, tattoos, actinic changes or which are performed as a treatment for acne; services and supplies for smoking cessation programs and treatment of nicotine addiction, and carbon dioxide, self-help, biofeedback, recreational, educational, or sleep therapy or other forms of self-care or self-help training and any related diagnostic testing.

Hawaii Includes physical, occupational, speech, and pulmonary therapies. Excludes maintenance therapy, which is defined as 

activities that preserve present functional level and prevent regression; cardiac rehabilitation.

Idaho 20 visits per year for physical, occupational, and speech therapies combined. Respiratory therapy is covered under a 

separate benefit category.

Illinois Includes physical, occupational, speech, pulmonary, and cardiac therapies. 36 outpatient treatments every six months 

are allowed for cardiac therapy. Cardiac rehabilitation services are only provided in Blue Cross and Blue Shield approved programs, if you have a history of any of the following: acute myocardial infarction, coronary artery bypass graft surgery, percutaneous transluminal coronary angioplasty, heart valve surgery, heart transplantation, stable angina pectoris, compensated heart failure, or transmyocardial revascularization.

Indiana 20 visits per year for each physical, occupational, pulmonary, and speech therapies. 36 visits per year for cardiac rehab. 

Limits are shared between rehabilitation and habilitation services. Excludes maintenance therapy to delay or minimize muscular deterioration in patients suffering from a chronic disease or illness; repetitive exercise to improve movement, maintain strength, and increase endurance (including assistance with walking for weak or unstable patients); range of motion and passive exercises that are not related to restoration of a specific loss of function but are for maintaining a range of motion in paralyzed extremities; general exercise programs; diathermy, ultrasound, and heat treatments for pulmonary conditions; diapulse; work hardening; diversional, recreational, vocational therapies and supplies (e.g., hobbies and crafts); therapy to improve or restore functions that could be expected to improve as the patient resumes normal activities again; general exercises to promote overall fitness and flexibility; therapy to improve motivation; suction therapy for newborns (feeding machines); soft tissue mobilization (visceral manipulation or visceral soft tissue manipulation), augmented soft tissue mobilization, myofascial; adaptions to the home such as rampways, door widening, automobile adaptors, kitchen adaptation, and other types of similar equipment; home programs and ongoing conditioning and maintenance for cardiac rehab; pulmonary rehabilitation in the acute inpatient rehabilitation setting; admission to a hospital mainly for physical therapy; long-term rehabilitation in an inpatient setting.

Iowa Includes cardiac rehabilitation, services to treat the upper extremities (arms from the shoulders to the fingers), and rehabilitative 

speech therapy when related to a specific illness, injury, or impairment, and occupational and pulmonary therapies. Excludes occupational therapy supplies and occupational therapy provided as an inpatient in the absence of a separate medical condition that requires hospitalization; speech therapy services not provided by a licensed or certified speech pathologist; speech therapy to treat certain developmental, learning, or communication disorders such as stuttering and stammering; physical therapy as provided as an inpatient in the absence of a separate medical condition that requires hospitalization.

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 71
Appendix Table 3. (continued)

State Details of Coverage

Kansas Includes physical, occupational, speech, respiratory, neuropsychological, cardiac, and pulmonary therapies. Excludes 

vocational rehabilitation and cognitive therapies.

Kentucky 20 visits per year for each physical, occupational, pulmonary, and speech therapies. 36 visits per year for cardiac rehab. 

Limits are shared between rehabilitation and habilitation services. Excludes maintenance therapy to delay or minimize muscular deterioration in patients suffering from a chronic disease or illness; repetitive exercise to improve movement, maintain strength, and increase endurance (including assistance with walking for weak or unstable patients); range of motion and passive exercises that are not related to restoration of a specific loss of function but are for maintaining a range of motion in paralyzed extremities; general exercise programs; diathermy, ultrasound, and heat treatments for pulmonary conditions; diapulse; work hardening; supplies (looms, ceramic tiles, leather, utensils); therapy to improve or restore functions that could be expected to improve as the patient resumes normal activities again; general exercises to promote overall fitness and flexibility; therapy to improve motivation; suction therapy for newborns (feeding machines); soft tissue mobilization (visceral manipulation or visceral soft tissue manipulation), augmented soft tissue mobilization, myofascial; adaptions to the home such as rampways, door widening, automobile adaptors, kitchen adaptation, and other types of similar equipment; home programs, ongoing conditioning and maintenance for cardiac rehab; pulmonary rehabilitation in acute inpatient rehabilitation; admission to a hospital mainly for physical therapy; long-term rehabilitation in an inpatient setting.

Louisiana Occupational, physical, speech-language, and chiropractic therapies. Rehabilitative care benefits are available for services 

provided on an inpatient or outpatient basis. The member must be able to tolerate a minimum of three hours of active therapy per day. An inpatient rehabilitation admission must be authorized prior to the admission and must begin within 72 hours following the discharge from an inpatient hospital for the same or similar condition. Day rehabilitation programs may be authorized in place of inpatient stays for rehabilitation but must be authorized prior to beginning the program and must begin within 72 hours following discharge from an inpatient admission for the same or similar condition. Excludes visual therapy; lifestyle or habit changing clinics or programs; recreational therapy; therapy primarily to enhance athletic abilities; and inpatient pain rehabilitation and pain control programs.

Maine 60 visits per year physical, occupational, and speech therapies combined. Respiratory therapy and cardiac rehabilitation 

are not included in the above limit but are covered. Limits are shared between rehabilitation and habilitation services. Excludes health club and spa memberships, exercise equipment, charges from a physical fitness instructor or personal trainer, or any other charges for activities, equipment, or facilities used for developing or maintaining physical fitness, even if ordered by a physician; massage therapy, paraffin baths, hot packs, whirlpools, or moist or dry heat applications unless in conjunction with an active course of treatment; maintenance services, treatments or therapy; speech therapy benefits for deficiencies resulting from mental retardation or dysfunctions that are self-correcting, such as language treatment for young children with natural dysfluency or developmental articulation errors; vision therapy, including treatment such as vision training, orthoptics, eye training, or eye exercises.

72 National Council on Disability
Appendix Table 3. (continued)

State Details of Coverage

Maryland 30 visits per year for each physical, speech, and occupational therapies. Pulmonary therapy is covered under a separate 

category and is limited to one program per lifetime for those who have been diagnosed with significant pulmonary disease or surgery, and visit limit for each type of therapy is increased to 90 per year when in parity with cardiac rehabilitation.

Massachusetts Includes physical, occupational, cardiac, and speech therapies.Michigan 30 visits apply to all rehabilitation services, including physical, occupational, chiropractic, speech, pulmonary, cardiac, and 

biofeedback therapies.

Minnesota Coverage not detailed.Mississippi 20 visits per year for physical and occupational therapies combined. Separate 20-visit limit for speech therapy. 36-visit 

limit for cardiac rehabilitation. Benefits are for the coordinated use of medical, social, educational, or vocational services, beyond the acute care stage of disease or injury, for the purpose of upgrading the physical functional ability of a patient disabled by disease or injury so that the patient may independently carry out ordinary daily activities. Excludes therapy services related to general conditioning of the patient; therapies rendered primarily for job training; pulmonary rehabilitation; speech therapy for learning disabilities and developmental problems.

Missouri 20 visits per year for physical, occupational, and pulmonary therapies combined. 36 visits per year for cardiac rehab. Also 

covers speech therapy. Limits are shared between rehabilitation and habilitation services. Excludes maintenance therapy to delay or minimize muscular deterioration in patients suffering from a chronic disease or illness; repetitive exercise to improve movement, maintain strength and increase endurance (including assistance with walking for weak or unstable patients); range of motion and passive exercises that are not related to restoration of a specific loss of function but are for maintaining a range of motion in paralyzed extremities; general exercise programs; diathermy, ultrasound, and heat treatments for pulmonary conditions; diapulse; work hardening; supplies (looms, ceramic tiles, leather, utensils); therapy to improve or restore functions that could be expected to improve as the patient resumes normal activities again; general exercises to promote overall fitness and flexibility; therapy to improve motivation; suction therapy for newborns (feeding machines); soft tissue mobilization (visceral manipulation or visceral soft tissue manipulation), augmented soft tissue mobilization, myofascial; adaptions to the home such as rampways, door widening, automobile adaptors, kitchen adaptation, and other types of similar equipment; home programs and ongoing conditioning and maintenance for cardiac rehab; pulmonary rehabilitation in the acute inpatient rehabilitation setting; admission to a hospital mainly for physical therapy; long-term rehabilitation in an inpatient setting; services, supplies, and equipment for gastric electrical stimulation, hippotherapy, intestinal rehabilitation therapy, prolotherapy, recreational therapy, and sensory integration therapy.

Montana Includes physical, occupational, cardiac, and speech therapies.Nebraska Quantitative limit units apply. Includes physical, occupational, cardiac, pulmonary, and speech therapies. Excludes 

therapies rendered primarily for job training.

Nevada 60 visits per year combined with inpatient rehab, includes physical, occupational, and speech therapies.

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 73
Appendix Table 3. (continued)

State Details of Coverage

New Hampshire

20 visits per year respiratory therapy and cardiac rehabilitation combined. Separate 20 visits per year for physical, occupational, and speech therapy. Limits are shared between rehabilitation and habilitation services. Excludes ongoing or lifelong exercise and education programs intended to maintain fitness, including voice fitness, or to reinforce lifestyle changes, including lifestyle changes affecting the voice; voice therapy, vocal retraining, preventive therapy, or therapy provided in a group setting; educational reasons or for developmental disabilities, except for “early intervention services”; sport, recreational or occupational reasons; physical therapy for TMJ; health club and spa memberships, exercise equipment, charges from a physical fitness instructor or personal trainer, or any other charges for activities, equipment, or facilities used for developing or maintaining physical fitness, even if ordered by a physician; rehabilitation services primarily intended to improve the level of physical functioning for enhancement of job, athletic, or recreational performance; work hardening programs and programs for general physical conditioning.

New Jersey 30 visits per year. Preapproval required. Separate from services provided through home health care benefits. Includes 

physical, occupational, speech, and respiratory therapies.

New Mexico Coverage not detailed.New York 60 visits per condition per lifetime combined. Covers physical, speech, and occupational therapies. Speech and physical 

therapy are covered only following a hospital stay or surgery.

North Carolina 30 visits per year for physical, occupational, and chiropractic therapies combined. Separate 30 visits for speech therapy, 

not including treatments for stuttering. Separate 30 visits per year for cardiac therapy with the option to expand the initial allotment if medically necessary. One course of treatment per year for pulmonary rehab, excluding group classes. Excludes cognitive therapy.

North Dakota 30 treatments per year. Includes physical, occupational, speech, cardiac, and water therapies. Excludes services provided 

in the members’ home for convenience; that are not expected to make measurable or sustainable improvement within a reasonable period of time including therapy for chronic or recurring symptoms including but not limited to arthritis, back pain, and fibromyalgia; hot or cold pack therapy, including polar ice therapy and water circulating devices; speech therapy for the purpose of correcting speech impediments (stuttering or lisps) or assisting the initial development of verbal facility or clarity; voice training and voice therapy.

Ohio 20 visits per year. Separate 20 visits per year for each physical, occupational, pulmonary, and speech therapies. Separate 

36-visit limit for cardiac rehab. Excludes maintenance therapy to delay or minimize muscular deterioration in patients suffering from a chronic disease or illness; repetitive exercise to improve movement, maintain strength, and increase endurance (including assistance with walking for weak or unstable patients); range of motion and passive exercises that are not related to restoration of a specific loss of function but are for maintaining a range of motion in paralyzed extremities; general exercise programs; diathermy, ultrasound, and heat treatments for pulmonary conditions; diapulse;

74 National Council on Disability
Appendix Table 3. (continued)

State Details of Coverage

work hardening; diversional, recreational, and vocational therapies (e.g., hobbies, arts and crafts) and their supplies; therapy to improve or restore functions that could be expected to improve as the patient resumes normal activities again; general exercises to promote overall fitness and flexibility; therapy to improve motivation; suction therapy for newborns (feeding machines); soft tissue mobilization (visceral manipulation or visceral soft tissue manipulation), augmented soft tissue mobilization, myofascial; adaptions to the home such as rampways, door widening, automobile adaptors, kitchen adaptation, and other types of similar equipment; home programs, ongoing conditioning and maintenance in cardiac rehab; pulmonary rehabilitation in the acute inpatient rehabilitation setting; admission to a hospital mainly for physical therapy; long-term rehabilitation in an inpatient setting.

Oklahoma 25 visits per year of physical, occupational, and manipulative therapies combined.Oregon 30 visits per year. Covers services provided by a licensed physical therapist, occupational therapist, speech-language 

pathologist, physician, or other practitioner licensed to provide physical, occupational, or speech therapy. Services must be prescribed in writing by a licensed physician, dentist, podiatrist, nurse practitioner, or physician assistant. The prescription must include site, modality, duration, and frequency of treatment. Only treatment of neurologic conditions (e.g., stroke, spinal cord injury, head injury, pediatric neurodevelopmental problems, and other problems associated with pervasive developmental disorders for which rehabilitative services would be appropriate for children under 18 years of age) may be considered for additional benefits, not to exceed 30 visits per condition, when criteria for supplemental services are met. Includes pulmonary therapy and speech therapy only when needed to correct stuttering, hearing loss, peripheral speech mechanism problems, and deficits due to neurological disease or injury. Cardiac therapy is covered by a separate benefit category.

Pennsylvania 30 visits per year for physical and occupational therapies combined. Separate 30 visits per year of speech therapy.Rhode Island Includes physical, occupational, and speech therapies. 18 weeks (or 36 visits, whichever occurs first) per covered episode 

of cardiac rehab. Respiratory therapy is covered under a separate benefit category. Excludes maintenance therapy.

South Carolina Includes physical therapy and pulmonary therapy when in conjunction with a lung transplant.South Dakota Coverage not detailed.

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 75
Appendix Table 3. (continued)

State Details of Coverage

Tennessee 20 visits per year. Outpatient, home health, or office therapeutic and rehabilitative services that are expected to result in 

significant and measurable improvement in a condition resulting from an acute disease, injury, autism in children under age 12, or cleft palate. The services must be performed by or under the direct supervision of a licensed therapist, upon written authorization of the treating practitioner. Includes physical, occupational, manipulative, pulmonary, and cardiac therapies and speech therapy for restoration of speech. Speech therapy is covered only for disorders of articulation and swallowing resulting from acute illness, injury, stroke, autism in children under age 12, or cleft palate. The limit on the number of visits for therapy applies to all visits for that therapy, whether received in a practitioner’s office, outpatient facility, or home health setting. Excludes treatment beyond what can reasonably be expected to significantly improve health, including therapeutic treatments for ongoing maintenance or palliative care; enhancement therapy that is designed to improve physical status beyond preinjury or pre-illness state; complementary and alternative therapeutic services; modalities that do not require the attendance or supervision of a licensed therapist; duplicate therapy; behavioral therapy, play therapy, communication therapy, and therapy for self-correcting language dysfunctions as part of speech therapy, physical therapy, or occupational therapy programs. Behavioral therapy and play therapy for behavioral health diagnoses may be covered under the Behavioral Health Rider (if applicable).

Texas 35 visits per year of physical, occupational, and speech therapies combined. Limit shared with habilitation and chiropractic 

services.

Utah 20 visits per year of physical, occupational, and speech therapies combined. Limit shared with habilitative services. 

Separate five visits per year combined of phase 2 cardiac rehabilitation following heart attack, cardiac surgery, severe angina, and phase 2 pulmonary rehabilitation resulting from chronic pulmonary disease or surgery.

Vermont* 30 outpatient sessions per year of physical, occupational, and speech therapy but may also include radiation therapy, 

chemotherapy, dialysis, and infusion therapy. Cardiac rehabilitation is covered up to 36 visits per cardiac event. Three supervised exercise sessions per week up to total of 36 sessions for cardiac and pulmonary rehab programs.

Virginia 30 visits per year for physical and occupational therapies combined. Separate 30 visits per year for each speech, 

respiratory, and cardiac therapies. Limit shared between rehabilitation and habilitation services. Excludes physical or occupational therapy to maintain or preserve current function if there is no chance of improvement or reversal; group or individual exercise classes or personal training sessions; recreational therapy including but not limited to sleep, dance, arts, crafts, aquatic, gambling, and nature therapy.

Washington 25 visits per year. Benefits cover physical, occupational, and speech therapies.

76 National Council on Disability
Appendix Table 3. (continued)

State Details of Coverage

West Virginia Includes treatment for stroke, spinal cord injury, congenital deformity, amputation, major multiple traumas, fracture 

of femur, brain injury, polyarthritis, including rheumatoid arthritis, neurological disorders, cardiac disorders, and burns when there is a reasonable likelihood services will restore optimal physical, medical, psychological, social, emotional, vocational, and economic status. Excludes services associated with mental conditions, chemical dependency, vocational rehabilitation, long-term maintenance, and custodial services. All covered services must be medically necessary unless otherwise specified.

Wisconsin 25 visits per year for each physical, occupational, speech, and pulmonary therapies. 36 visits per year for cardiac rehab. 30 

visits per year for post-cochlear implant therapy. Includes speech therapy only for the treatment of disorders of speech, language, voice, communication, and auditory processing resulting from injury, stroke, cancer, congenital anomaly, or autism spectrum disorders.

Wyoming 60 visits per year of physical and occupational therapies combined. A separate 20-visit limit for speech therapy. 

Rehabilitative care provides coverage for an accidental or medical injury. The intent is to return patients to their physical status (as much as possible) prior to the injury. Excludes hypnosis, cardiac, and pulmonary rehabilitation, biofeedback, or pain treatment.

* These states’ benchmark plan summary tables include, as outpatient rehabilitation services, physical, occupational, and speech therapies. However, in more detailed tables that separately list individual categories of rehabilitative speech therapy, rehabilitative occupational therapy, and rehabilitative physical therapy, they are described as not covered.

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 77
Appendix Table 4. Essential Health Benefit (EHB) Coverage of Durable Medical Equipment

State Details of Coverage

Alabama Covers services, supplies, equipment, accessories, or other items that can be purchased at retail establishments or 

otherwise over the counter without a doctor’s prescription. Excludes hot and cold packs, including circulating devices and pumps; standard batteries used to power medical or durable medical equipment; solutions used to clean or prepare skin or minor wounds, including alcohol solution or wipes, povidone-iodine solution or wipes, hydrogen peroxide, and adhesive remover; standard dressing supplies and bandages used to protect minor wounds such as Band-Aids, 4 x 4 gauze pads, tape, compression bandages, eye patches; elimination and incontinence supplies such as urinals, diapers, and bed pans, and blood pressure cuffs, sphygmometers, stethoscopes, and thermometers; sleep studies performed outside of a health care facility, such as home sleep studies, whether or not supervised or attended; transcutaneous electrical nerve stimulation (TENS) equipment and all related supplies, including TENS units, conductive garments, application of electrodes, leads, electrodes, batteries, and skin preparation solutions; services for personal hygiene, comfort or convenience items such as air-conditioners, humidifiers, whirlpool baths, and physical fitness or exercise apparel; exercise equipment including shoes, weights, exercise bicycles or tracks, weights or variable resistance machinery, and equipment producing isolated muscle evaluations and strengthening; treatment programs, the use of equipment to strengthen muscles according to preset rules, and related services performed during the same therapy session.

Alaska Excludes supplies or equipment not primarily intended for medical use; special or extra-cost convenience features; 

exercise equipment and weights; orthopedic appliances prescribed primarily for use during participation in sports, recreation, or similar activities; penile prostheses; whirlpools, whirlpool baths, portable whirlpool pumps, sauna baths, and massage devices; overbed tables, elevators, vision aids, and telephone alert systems; structural modifications to your home or personal vehicle; eyeglasses, contact lenses, and other vision hardware for conditions not listed as a covered medical condition, including routine eye care; prosthetics, intraocular lenses, appliances, or devices requiring surgical implantation; hypodermic needles, syringes, lancets, test strips, testing agents, and alcohol swabs used for selfadministered medications. Applicable deductible and coinsurance apply.

Arizona Excludes DME due to misuse, damage, or replacement when lost.Arkansas Durable Medical Equipment is equipment that can withstand repeated use, is primarily and customarily used to serve 

a medical purpose, generally is not useful to a person in the absence of an illness or injury, and is appropriate for use in the home. DME delivery or set up charges are included in the allowance. A single acquisition of eyeglasses or contact lenses within the first six months following cataract surgery is covered. With respect to such eyeglasses or contact lenses, tinting or anti-reflective coating and progressive lenses are not covered. Frames are subject to a $50 maximum allowance. Replacement of DME is covered only when necessitated by normal growth or when it exceeds its useful life; maintenance and repairs resulting from misuse or abuse of DME are the responsibility of the member. When it is more cost-effective, Health Advantage in its discretion will purchase rather than lease equipment. In making such purchase, Health Advantage may deduct previous rental payments from its purchase allowance. Coverage for supplies used in connection with DME is limited to a 90-day supply per purchase.

78 National Council on Disability
Appendix Table 4. (continued)

State Details of Coverage

California Prior authorization required.Colorado Coverage not detailed.Connecticut DME, including prosthetics, consists of nondisposable equipment that is primarily used to serve a medical purpose that 

is generally not useful to a person in the absence of illness or injury and is appropriate for use in the home, including breast prosthetics following a mastectomy. DME benefits also include DME for the treatment of insulin-dependent diabetes, insulin-using diabetes, gestational diabetes, and noninsulin-using diabetes, and craniofacial disorders, hearing aids for a member age 12 and under, and wigs for a member suffering hair loss as a result of chemotherapy or radiation therapy when the wig is prescribed by an oncologist. Includes DME that does not duplicate the function of any previously obtained equipment; DME for the treatment of craniofacial disorders; hearing aids for a member age 12 and under up to a maximum of $1,000 every 24 months. Excludes hearing aids, except as noted; medical supplies or equipment that are not considered to be durable medical equipment or disposable medical supplies or that are not on our covered list of such equipment or supplies; nondurable equipment such as orthopedic or prosthetic shoes, foot orthotics, and prophylactic antiembolism stockings (jobst stockings) without a history of deep vein thrombosis and varicose veins. To be covered, DME must be prescribed by a physician, preauthorized (as required), and provided by a DME supplier that is a participating provider. However, if the participating provider does not carry the covered DME, it may be purchased at a store that is a nonparticipating provider as long as the DME is both prescribed and preauthorized. Having a prescription for DME from a physician is not a guarantee the DME is covered. Preauthorization only will be required for insulin pumps, wound vacs, real-time continuous blood glucose monitors, customized wheelchairs and scooters, and osteogenic stimulators (including spinal, non-spinal, and ultrasound). DME may be authorized for rental or purchase on the basis of the expected length of medical need and the cost-benefit of a purchase or rental. We will decide whether DME is to be rented or purchased. If a rental item is converted to a purchase, the coinsurance the member pays for the purchase will be based on only the balance remaining to be paid to purchase the equipment.

Delaware Coverage not detailed.DC Coverage not detailed.Florida Excludes DME which is primarily for convenience or comfort; modifications to motor vehicles or homes, including but 

not limited to wheelchair lifts or ramps; water therapy devices such as jacuzzis, hot tubs, swimming pools, or whirlpools; exercise and massage equipment; electric scooters; hearing aids; air conditioners and purifiers, humidifiers, water softeners and purifiers, heat appliances, dehumidifiers; pillows, mattresses, or waterbeds; escalators, elevators, stair glides; emergency alert equipment, handrails, and grab bars. The replacement of DME solely because it is old or used are excluded.

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 79
Appendix Table 4. (continued)

State Details of Coverage

Georgia Includes DME, medical devices and supplies, prosthetics, and appliances. Excludes air conditioners, humidifiers, 

dehumidifiers, or purifiers; arch supports and orthopedic or corrective shoes, shoe inserts, orthotics (except for care of the diabetic foot), and orthopedic shoes (except when an orthopedic shoe is joined to a brace); heating pads, hot water bottles, home enema equipment, or rubber gloves; sterile water; deluxe equipment or premium services, such as motordriven chairs or beds, when standard equipment is adequate; rental or purchase of equipment in a facility which provides such equipment; electric stair chairs or elevator chairs; physical fitness, exercise, or ultraviolet and tanning equipment; residential structural modification to facilitate the use of equipment; other items of equipment that the Blue Cross Blue Shield Healthcare Plan decides do not meet the listed criteria; Band-Aids, tape, nonsterile gloves, thermometers, bed boards; rental of exercise cycles, hypoallergenic pillows, mattresses, or waterbeds, whirlpool, spa or swimming pools, exercise and massage equipment, air purifiers, escalators, elevators, ramps, emergency alert equipment, handrails, heat appliances, improvements made to a participant’s house or place of business, and adjustments made to vehicles.

Hawaii DME can be rented or purchased, however certain items are covered only as rentals. Supplies and accessories necessary 

for the effective functioning of the equipment are covered subject to certain limitations and exclusions.

Idaho Includes orthotics; prosthetics and equipment; medical equipment and supplies. Excludes common household items such 

as hot tubs, convenience items, air conditioners, humidifiers, etc.

Illinois Includes internal cardiac valves, internal pacemakers, mandibular reconstruction devices (not used primarily to support 

dental prosthesis), bone screws, bolts, nails, plates, and any other internal and permanent devices; insulin pumps; CPAPs; the rental (but not to exceed the total cost of equipment) or purchase of DME required for temporary therapeutic use provided that this equipment is primarily and customarily used to serve a medical purpose; supportive devices for the body or a part of the body, head, neck, or extremities, including but not limited to leg, back, arm, and neck braces and their necessary adjustments, repairs, and replacements. Excludes implants (covered separately); foot orthotics defined as any in-shoe device designed to support the structural components of the foot during weight-bearing activities; special braces, splints, specialized equipment, appliances, ambulatory apparatus, battery implants, and wigs (also referred to as cranial prostheses). Benefits will cover prosthetic devices, special appliances, and surgical implants only when they are required to replace all or part of an organ or tissue of the human body or they are required to replace all or part of the function of a nonfunctioning or malfunctioning organ or tissue. Benefits will also include adjustments, repair, and replacements of covered prosthetic devices, special appliances, and surgical implants when required because of wear or change in a patient’s condition (excluding dental appliances other than intraoral devices used in connection with the treatment of temporomandibular joint (TMJ) dysfunction and related disorders, subject to specific limitations applicable to TMJ dysfunction and related disorders, and replacement of cataract lenses when a prescription change is not required).

80 National Council on Disability
Appendix Table 4. (continued)

State Details of Coverage

Indiana Includes DME, medical devices and supplies, and prosthetics and appliances, including cochlear implants. Excludes 

items for personal hygiene, environmental control or convenience; exercise equipment; repair and replacement due to misuse, malicious breakage or gross neglect, lost or stolen items; adhesive tape, Band-Aids, cotton-tipped applicators; arch supports; doughnut cushions; hot packs, ice bags; vitamins; medijectors; air conditioners; cold pack pump; raised toilet seats; rental of equipment if the member is in a facility that is expected to provide such equipment; translift chairs; treadmill; tub chair used in shower; dentures replacing teeth or structures directly supporting teeth; dental appliances; nonrigid appliances as elastic stockings, garter belts, arch supports, and corsets; artificial heart implants; wigs (except following cancer treatment); penile prosthesis in men suffering impotency as a result of disease or injury; orthopedic shoes (except therapeutic shoes for diabetics); foot support devices, such as arch supports and corrective shoes unless they are an integral part of a leg brace.

Iowa Includes diabetic supplies and prosthetic limbs. Excludes orthotics, wigs or hair pieces, pools, whirlpools, spas, common 

first aid supplies, and health club memberships.

Kansas Includes orthopedic and prosthetic devices, orthopedic braces, artificial limbs, artificial eyes, auditory osseointegrated 

devices. Benefits are limited to the amount normally available for a standard item; charges for deluxe items are not covered. Excludes eyeglasses and contact lenses (except the initial eyeglasses or contacts following surgery for cataracts, aphakia, or pseudophakia); hearing aids; hair prosthesis; dental plates, bridges or any dental prostheses, dental braces; apparel (coverage available for two postmastectomy bras per year); individualized, custom-fabricated shoe insert orthotic devices, appliances, and those available commercial over-the-counter foot devices.

Kentucky Includes DME, medical devices and supplies, prosthetics and appliances, and cochlear implants. Excludes personal 

hygiene items, items for environmental control or convenience; exercise equipment; repair and replacement due to misuse, malicious breakage, or gross neglect, lost or stolen items; adhesive tape, Band-Aids, cotton-tipped applicators; arch supports; doughnut cushions; hot packs, ice bags; vitamins; medijectors; air conditioners; cold pack pump; raised toilet seats; rental of equipment if the member is in a facility that is expected to provide such equipment; translift chairs; treadmill; tub chair used in shower; dentures replacing teeth or structures directly supporting teeth; dental appliances; elastic stockings, garter belts, arch supports, and corsets; artificial heart implants; wigs (except following cancer treatment); penile prosthesis in men suffering impotency that results from disease or injury; orthopedic shoes (except therapeutic shoes for diabetics); foot support devices, such as arch supports and corrective shoes unless they are an integral part of a leg brace; standard elastic stockings, garter belts, and other supplies not specially made and fitted (except as specified under Medical Supplies).

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 81
Appendix Table 4. (continued)

State Details of Coverage

Louisiana Includes DME, orthotics devices, and prosthetic appliances and devices (limb and nonlimb); repair or adjustment of 

purchased DME or for replacement of components; medical equipment and supplies. There are reasonable quantity limits on DME as determined by the insurer. Excludes coverage during rental of DME for repair, adjustment, or replacement of components and accessories necessary for the effective functioning and maintenance of covered equipment as this is the responsibility of the supplier; coverage for equipment for which a commonly available supply or appliance can substitute; coverage for the repair or replacement of equipment lost or damaged due to neglect or misuse; coverage for fitting or adjustments as this is included in the allowable charge; repair or replacement is covered only within a reasonable time period from the date of purchase as determined by insurer and is subject to the expected lifetime of the device; supportive devices for the foot, except when used in the treatment of diabetic foot disease; hairpieces, wigs, hair growth, or hair implants; personal comfort, hygiene, and convenience items including air conditioners, humidifiers, personal fitness equipment, or alterations to a member’s home or vehicle. Benefits based on the allowable charge for standard devices will be provided toward any deluxe device when the member selects a deluxe device solely for comfort or convenience when documented to be medically necessary.

Maine Includes DME, medical supplies, and prosthetic devices. Excludes personal comfort items; orthotic devices; prosthesis 

designed exclusively for athletic purposes; bandages and other disposable items that may be purchased without a prescription; food or dietary supplements; shoe inserts; fixtures installed in your home or installed on your real estate; exercise equipment.

Maryland Coverage not detailed.Massachusetts Excludes foot orthotics; medical supplies; equipment not designed to serve medical purpose.Michigan Coverage not detailed.Minnesota Excludes equipment and supplies not obtained from or repaired by approved vendors; diabetic supplies and equipment 

besides indicated models and brands; PKU and oral amino acid-based formulas outside medical coverage criteria; costs exceeding the cost of an alternative piece of equipment or service that is effective and medically necessary; replacement or repair of any items if they are damaged or destroyed by member misuse, abuse, or carelessness, lost or stolen items; duplicate or similar items; labor and related charges for repair that are more than the cost of replacement by an approved vendor; sales tax, mailing, delivery charges, services call charges; items for education, hygiene, vocation, comfort, convenience, or recreation; communication aids or devices; household equipment that primary has customary uses other than medical; household fixtures, modification to the structure of the home, vehicle, car, or van modifications; rental equipment while member’s owned equipment is being repaired by noncontracted vendors beyond one month rental; other equipment and supplies that we determine are not eligible for coverage. Insurer determines if an item will be approved for rental versus purchase.

82 National Council on Disability
Appendix Table 4. (continued)

State Details of Coverage

Mississippi Includes items that are used to serve a medical purpose, can withstand repeated use, are generally not useful to a person 

in the absence of illness, injury, or disease, and are appropriate for use in the patient’s home. This includes orthotic devices and prosthetic appliances. Excludes hot tubs, swimming pools, whirlpools, lift chairs, air purifiers; alterations or structural changes to the member’s home, auto, or personal property to accommodate any DME. Benefits provided only when equipment is prescribed by a physician and is not a comfort or convenience item.

Missouri Includes DME, medical devices and supplies, prosthetics and appliances, including cochlear implants. Excludes items 

for personal hygiene, environmental control or convenience; exercise equipment; repair and replacement due to misuse, malicious breakage, or gross neglect, lost or stolen items; adhesive tape, Band-Aids, cotton-tipped applicators; arch supports; doughnut cushions; hot packs, ice bags; vitamins; medijectors; elastic stockings or supports; gauze and dressing; air conditioners; cold pack pump; raised toilet seats; rental of equipment if the member is in a facility that is expected to provide such equipment; translift chairs; treadmill; tub chair used in shower; dentures replacing teeth or structures directly supporting teeth; dental appliances; elastic stockings, garter belts, arch supports, and corsets; artificial heart implants; wigs (except following cancer treatment); penile prosthesis in men suffering impotency that results from disease or injury; orthopedic shoes (except therapeutic shoes for diabetics); foot support devices, such as arch supports and corrective shoes unless they are an integral part of a leg brace; standard elastic stockings, garter belts, and other supplies not specially made and fitted.

Montana Includes appropriate equipment used for therapeutic purposes where the member resides. The equipment must be able 

to withstand repeated use, primarily used to serve a medical purpose rather than for comfort or convenience, generally not useful to a personal who is not ill or injured, and prescribed by a physician. One insulin pump each warranty period. Excludes exercise equipment; car or stair lifts; whirlpool baths, hot tubs, saunas, waterbeds; computerized or deluxe equipment; computer-assisted communication devices; DME primarily for use in athletics; replacement of lost or stolen durable medical equipment; repair or rental equipment; duplicate equipment purchased primarily as a convenience.

Nebraska Includes orthotics only for diabetics, medical equipment and supplies. Excludes replacement of rental equipment due 

to misuse, abuse, or loss; wigs; items for personal comfort; home exercise; pools, whirlpools, spas, hydrotherapy equipment; surgical supports, corsets, clothing unless for the purpose of recovery from surgery or injury; common first aid supplies; and health club membership.

Nevada $4,000 per lifetime.

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 83
Appendix Table 4. (continued)

State Details of Coverage

New Hampshire

Includes DME, medical supplies, and prosthetic devices. Excludes arch supports, corrective shoes, foot orthotics and fittings, castings or any services related to footwear or orthopedic devices or any shoe modification; special furniture such as seat lift chairs, elevators (including stairway elevators or lifts), back chairs, special tables, and posture chairs, adjustable chairs, bed boards, bed tables, and bed support devices of any type, including adjustable beds; glasses; sports bras, nursing bras, and maternity girdles or any other special clothing except as stated; nonprescription supplies, first aid supplies, ACE bandages, cervical pillows, alcohol, peroxide, betadine, iodine, or phisohex solution, alcohol wipes, betadine or iodine swabs, items for personal hygiene; bath seats or benches (including transfer seats or benches), whirlpools or any other bath tub, rails or grab bars for the bath, toilet rails or grab bars, commodes, raised toilet seats, bed pans; heat lamps, heating pads, hydrocoliator heating units, hot water bottles, batteries, and cryo cuffs; biomechanical limbs; computers, physical therapy equipment, physical or sports conditioning equipment, exercise equipment, or any other item used for leisure, sports, recreational, or vocational purposes; any equipment or supplies intended for educational or vocational rehabilitation; vehicles, scooters, or any similar mobility device; safety equipment including but not limited to hats, belts, harnesses, glasses, or restraints; costs related to residential or vocational remodeling or indoor climate or air quality control, air conditioners, air purifiers, humidifiers, dehumidifiers, vaporizers, and any other room heating or cooling device or system; self-monitoring devices except as stated; TENS units for incontinence; biofeedback devices, self-teaching aids, books, pamphlets, video tapes, video disks, fees for Internet sites or software, or any other media instruction or for any other educational or instructional material, technology, or equipment; and dentures, orthodontics, dental prosthesis and appliances; appliances used to treat temporomandibular joint (TMJ) disorders.

New Jersey Preapproval required, must be ordered by a network practitioner and arranged through the carrier.New Mexico Coverage not detailed.New York DME defined as equipment that is designed and intended for repeated use, primarily and customarily used to serve a 

medical purpose, generally not useful to a person in the absence of disease or injury and is appropriate for use in the home. $1,500 per year for nonessential DME and medical supplies. Coverage for standard equipment only. Excludes orthotics, arch supports, corrective shoes, false teeth, maintenance, and repairs due to member’s misuse.

North Carolina Includes orthotics, prosthetics, medical devices, and medical equipment and supplies. Excludes wigs; items of personal 

comfort; home exercise; pools, whirlpools, spas, hydrotherapy equipment; surgical supports, corsets, clothing unless for the purpose of recovery from surgery or injury; common first aid supplies; health club membership.

84 National Council on Disability
Appendix Table 4. (continued)

State Details of Coverage

North Dakota Unit limits unique to type of DME defined per medical coverage policy. Excludes home traction units; DME replacements 

due to physical growth; DME to aid in the correction of congenital anomalies over the age of five years; orthopedic shoes; custom-made orthotics; over-the-counter orthotics and appliances; disposable supplies (including diapers) or nondurable supplies and appliances, including those associated with equipment determined not to be eligible for coverage; revision of durable medical equipment, except when made necessary by normal wear or use, replacement or repair of equipment if items are damaged or destroyed by member misuse, abuse, or carelessness, or are lost or stolen; duplicate or similar items; sales tax, mailing, delivery charges, service call charges, or charges for repair estimates; items that are primarily educational in nature or for vocation, comfort, convenience ,or recreation; communication aids or devices to create, replace, or augment communication abilities including, but not limited to, hearing aids, speech processors, receivers, communication boards, or computer- or electronic-assisted communication; household equipment that primarily has customary uses other than medical, such as air purifiers, central or unit air conditioners, water purifiers, nonallergic pillows, mattresses, or waterbeds, physical fitness equipment, hot tubs, or whirlpools; household fixtures including escalators or elevators, ramps, swimming pools, and saunas; home modifications including wiring, plumbing, or changes for installation of equipment; vehicle modifications including hand brakes, hydraulic lifts, and car carrier; remote control devices as optional accessories; any other equipment and supplies that the plan determines is not eligible for coverage.

Ohio DME, medical devices and supplies, prosthetics and appliances, including cochlear implants. Limit of four surgical bras 

following mastectomy per benefit period; LVAD covered only as bridge to heart transplant. Excludes items for personal hygiene, environmental control or convenience; exercise equipment; repair and replacement due to misuse, malicious breakage, or gross neglect, lost or stolen items; adhesive tape, Band-Aids, cotton-tipped applicators; arch supports; doughnut cushions; hot packs, ice bags; vitamins; medijectors; air conditioners; cold pack pump; raised toilet seats; rental of equipment if the member is in a facility that is expected to provide such equipment; translift chairs; treadmill; tub chair used in shower; dentures replacing teeth or structures directly supporting teeth; dental appliances; elastic stockings, garter belts, arch supports, and corsets; artificial heart implants; wigs (except following cancer treatment); penile prosthesis in men suffering impotency that results from disease or injury; orthopedic shoes (except therapeutic shoes for diabetics); foot support devices such as arch supports and corrective shoes, unless they are an integral part of a leg brace; standard elastic stockings, garter belts, and other supplies not specially made and fitted.

Oklahoma Coverage not detailed.Oregon $5,000 per year. Exceptions to this limitation are EHBs such as prosthetics and orthotic devices, oxygen and oxygen 

supplies, diabetic supplies, wheelchairs, and breast pumps. Medical foods for the treatment of inborn errors of metabolism are also exempt from this limitation. Benefits exclude hospital-grade breast pumps.

Pennsylvania $2,500 per year. Precertification required for out-of-network care. Benefits will be reduced by 50 percent per service or 

supply if precertification is not obtained.

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 85
Appendix Table 4. (continued)

State Details of Coverage

Rhode Island DME is equipment that can withstand repeated use, is primarily and customarily used to serve a medical purpose, is not 

useful to a person in the absence of an illness or injury, and is for use in the home. DME items may be classified as rental or purchased items. A DME rental item is billed on a monthly basis for a specific period of months, after which the item is considered paid up to allowance. Allowance for a rental DME item will never exceed allowance for a purchased DME item. Preauthorization is recommended for certain items. Repairs and supplies to rental equipment are included in our rental allowance. Preauthorization is recommended for replacement and repairs of purchased DME. Includes wheelchairs, hospital beds, and other DME used only for medical treatment; replacement of purchased equipment that is needed due to a change in your medical condition. Excludes items found in the home that do not need a prescription and are easily obtainable, such as adhesive bandages, elastic bandages, gauze pads, and alcohol; supplies prescribed primarily for the convenience of the member or the member’s family, duplicate DME or medical supplies for use in multiple locations, or any DME or medical supplies used primarily to assist a caregiver; DME that does not directly improve the function of the member; pillows or batteries, except when used for the operation of a covered prosthetic device; items whose sole function is to improve the quality of life or mental well-being; repair or replacement of DME when under warranty, covered by the manufacturer, or during the rental period; repair charges to repair rental items.

South Carolina Includes orthotics, medical equipment and supplies that have exclusive medical use and are medical in nature, including 

wheelchairs, hospital-type beds, prosthetic devices, walkers, oxygen, respirators, etc. Excludes TENS unit; adjustable cranial orthosis as referenced in contract; bioelectric, microprocessor- or computer-programmed prosthetic components; air conditioners, whirlpool baths, spas, (de)humidifiers; wigs; fitness supplies; vacuum cleaners, air filters; common first aid supplies; manual or motorized wheelchairs or power-operated scooters for mobility outside the home setting.

South Dakota Equipment that is primarily and customarily manufactured to serve a medical purpose, including diabetic supplies and 

prosthetic limbs. Excludes orthotics, wigs or hair pieces, pools, whirlpools, spas, common first aid supplies, and health club memberships.

Tennessee Includes medically necessary and appropriate medical equipment or items that in the absence of illness or injury are of 

no medical or other value to you, can withstand repeated use in an ambulatory or home setting, require the prescription of a practitioner for purchase, are approved by the FDA for the illness or injury for which it is prescribed, and are not solely for convenience. Maximum allowable rental charge not to exceed the total maximum allowable charge for purchase. If renting the same type of equipment from multiple DME providers, and the total rental charges from the multiple providers exceed the purchase price of a single piece of equipment, you will be responsible for amounts in excess of the maximum allowable charge for purchase. Includes the repair, adjustment, or replacement of components and accessories necessary for the effective functioning of covered equipment; supplies and accessories necessary for the effective functioning of covered DME; the replacement of items needed as the result of normal wear and tear, defects, or obsolescence

86 National Council on Disability
Appendix Table 4. (continued)

State Details of Coverage

and aging. Insulin pump replacement is covered only for pumps older than 48 months and only if the pump cannot be repaired. Excludes charges exceeding the total cost of the maximum allowable charge to purchase the equipment; unnecessary repair, adjustment or replacement or duplicates of any such equipment; supplies and accessories that are not necessary for the effective functioning of the covered equipment; replacements for equipment lost, damaged, stolen, or prescribed as a result of new technology; items that require or are dependent on alteration of home, workplace, or transportation vehicle; motorized scooters, exercise equipment, hot tubs, pool, saunas; “deluxe” or “enhanced” equipment; computerized or gyroscopic mobility systems, roll-about chairs, geriatric chairs, hip chairs, and seat lifts of any kind; patient lifts, auto tilt chairs, air fluidized beds, or air flotation beds, unless approved by case management.

Texas Coverage not detailed.Utah Includes one breast prosthetic per affected breast every two years (requires preauthorization); eye prosthetic once per 

affected eye every five years; one lens for the affected eye following eligible corneal transplant surgery; contact lenses for documented keratoconus may be approved as medically necessary; one pair of ear plugs within 60 days following eligible ear surgery; continuous passive motion machine rentals may be approved for up to 21 days rental only for total knee or shoulder arthroplasty; wheelchairs require preauthorization through medical case management and are limited to one power wheelchair every five years; knee braces are limited to one per every three years. Excludes foot orthotics; training and testing in conjunction with DME or prosthetics; more than one lens for each affected eye following surgery for corneal transplant; DME that is inappropriate for the patient’s medical condition; diabetic supplies, such as insulin, syringes, needles (covered by pharmacy benefits); equipment purchased from nonlicensed providers; used DME; TENS units; neuromuscular stimulator; H-wave electronic devices; sympathetic therapy stimulators; limb prosthetics; machine rental or purchase for the treatment of sleep disorders; support hose for phlebitis or other diagnosis.

Vermont Includes supplies and equipment necessary for administration, orthotics (if approved), prosthetics, and devices. Threshold 

applies. Some durable medical equipment and supplies require prior approval.

Virginia Includes DME, medical devices and supplies, prosthetics and appliances, including cochlear implants. Excludes those 

items that have both a therapeutic and nontherapeutic use, including exercise equipment; air conditioners, dehumidifiers, humidifiers, and purifiers; hypoallergenic bed linens; whirlpool baths; handrails, ramps, elevators, stair glides; telephones; adjustments made to a vehicle; foot orthotics; changes made to home or place of business; repair or replacement of equipment lost or damaged through neglect; over-the-counter convenience and hygienic items including adhesive removers, cleansers, underpads, and ice bags.

Washington Coverage not detailed.West Virginia Includes purchase or rental at insurer’s option when prescribed by providers practicing within the scope of their license, 

including orthotics and prosthetics. Excludes dental appliances; elastic bandages, garter belts, or similar supplies; orthopedic shoes; items not serving a medical purpose; items not able to withstand repeated use. All covered services must be medically necessary unless otherwise specified.

(continued)

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 87
Appendix Table 4. (continued)

State Details of Coverage

Wisconsin One item per three years, up to $2,500 per year for nonessential DME. Includes equipment to assist mobility, such as 

a standard wheelchair; standard hospital-type bed; oxygen and the rental of equipment to administer oxygen (including tubing, connectors, and masks); delivery pumps for tube feedings (including tubing and connectors); braces, including necessary adjustments to shoes to accommodate braces (braces that stabilize an injured body part and braces to treat curvature of the spine are considered DME and are covered; braces that straighten or change the shape of a body part are orthotic devices and are excluded from coverage. Dental braces are also excluded from coverage); mechanical equipment necessary for the treatment of chronic or acute respiratory failure (except that air conditioners, humidifiers, dehumidifiers, air purifiers and filters, and personal comfort items are excluded from coverage); burn garments; insulin pumps and all related necessary supplies as described under diabetes services; external cochlear devices and systems (benefits for cochlear implantation are provided under the applicable medical/surgical benefit categories). Excludes prescribed or nonprescribed medical supplies and disposable supplies; compression stockings, ACE bandages, gauze, and dressings, urinary catheters, tubings, and masks unless necessary for the effective use of covered DME; devices used specifically as safety items or to affect performance in sports-related activities; blood pressure cuff and monitor; enuresis alarm; nonwearable external defibrillator; trusses; ultrasonic nebulizers; devices and computers to assist in communication and speech except for speech aid devices and tracheo-esophageal voice devices covered under DME; oral appliances for snoring; any device, appliance, pump, machine, stimulator, or monitor that is fully implanted into the body; repairs and replacement due to misuse, malicious damage, or gross neglect or to replace lost or stolen items Includes cochlear implants.

Wyoming Includes rental or purchase, initial fitting and adjustments, repair and replacement, used and refurbished equipment, 

diabetic supplies, therapeutic devices (e.g., hypodermic needles and syringes), oxygen, and onsite and take-home medical and surgical supplies. Excludes support devices for the foot, including flat foot conditions, for shoe inserts; deluxe motorized equipment, electronic speech aids, robotization devices, robotic prosthetics; dental appliances; artificial organs; personal hygiene and convenience items such as air conditioner, humidifiers, or physical fitness equipment; wigs or artificial hairpieces, or hair transplants or implants, regardless of whether there is a medical reason for hair loss.

88 National Council on Disability
Endnotes

1 Specifically, the 12th International Conference on Grey Literature at Prague issued the following definition in 

December 2010: “Grey literature stands for manifold document types produced on all levels of government, 

academics, business and industry in print and electronic formats that are protected by intellectual property 

rights, of sufficient quality to be collected and preserved by library holdings or institutional repositories, but not 

controlled by commercial publishers—i.e., where publishing is not the primary activity of the producing body.” 

Schöpfel, Joachim. “Towards a Prague Definition of Grey Literature,” in Twelfth International Conference on 

Grey Literature: Transparency in Grey Literature. Grey Tech Approaches to High Tech Issues, (Prague, December 

6–7 2010).

2 For our literature review, we included all available research that empirically analyzes the impact of the ACA for 

people with disabilities. We focused on ACA provisions most relevant to people with disabilities: Medicaid expansion, health insurance marketplaces, and long-term services and supports (LTSS) options. We also included 

empirical literature on the dependent coverage provision for young adults. We excluded most studies that analyze the effect of the ACA on the general population without specifically addressing the people with disabilities’ 

situation (some of this research is mentioned when comparing findings for people with disabilities with those 

for all adults). We also excluded studies that discuss the potential effect of the ACA on people with disabilities 

but that do not conduct an empirical analysis.

3 The Community First Choice option allows States to provide home and community-based attendant services 

and supports to eligible Medicaid enrollees under their State Plan. This State Plan option was established under 

the ACA.http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-ervices-and-supports/

home-and-community-based-services/community-first-choice-1915-k.html.

4 See, for example, CMCS Informational Bulletin, “Updates to the Section 1915 © Waiver Instructions and Technical Guide regarding employment and employment related services,” September 16, 2011. https://downloads 

.cms.gov/cmsgov/archived-downloads/CMCSBulletins/downloads/CIB-9-16-11.pdf.

5 One state (Colorado) offered both an ABP aligned to its standard Medicaid plan and a commercial plan and it 

therefore counted twice.

6 Kaiser Family Foundation. “Health Reform Implementation Timeline.” Accessed September 10, 2015. http://kff 

.org/interactive/implementation-timeline/.

7 Kaiser Family Foundation. “Status of State Action on the Medicaid Expansion Decision.” Last modified June 26, 2015. http://kff.org/health-reform/state-indicator/

state-activity-around-expanding-medicaid-under-the-affordable-care-act/.

8 EHBs consist of ten categories that QHPs, most other forms of private insurance, and benefit plans for individuals included in the Medicaid expansion must cover.

9 These totals combine partnership exchanges and federally supported marketplaces into the 

middle category of jointly operated marketplaces. See Kaiser Family Foundation. “State Health Insurance Marketplace Types, 2015.” Accessed September 10, 2015. http://kff.org/health-reform/state-indicator/

state-health-insurance-marketplace-types/.

10 Half of the informants were people with disabilities or individuals caring for family members or others with 

disabilities.

11 One state (Colorado) offered both an ABP aligned to its standard Medicaid plan and a commercial plan and it 

therefore counted twice.

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 89
12 Shartzer, Adele, Genevieve M. Kenney, and Stephen Zuckerman. “Quick Take: Uninsurance Rate Halved for 

Adults with Chronic Conditions.” Health Reform Monitory Survey. Washington, DC: Urban Institute, 2015. http://

hrms.urban.org/quicktakes/Uninsurance-Rate-Halved-for-Adults-with-Chronic-Conditions.html.

13 The number of states with approved Spas was provided by HHS staff.

14 A number of studies have discussed possible implications for people with disabilities. See for instance Rosenbaum, Sara, Joel B. Teitelbaum, and Katherine Hayes. “Crossing the Rubicon: The Impact of the Affordable Care 

Act on the Content of Insurance Coverage for Persons with Disabilities.” Notre Dame Journal of Ethics and 

Public Policy 25 (2011): 527–62 and Mechanic, David. “Seizing Opportunities under the Affordable Care Act for 

Transforming the Mental and Behavioral Health System.” Health Affairs 31, 2 (2012): 376–82. Similarly, Musumeci et al. uses three profiles of people with disabilities to explain how the ACA might affect different groups of 

people with disabilities, see Musumeci, MaryBeth, Julia Paradise, Erica Reaves, and Henry Claypool. “Benefits 

and Cost-Sharing for Working People with Disabilities in Medicaid and the Marketplace.” Issue brief, Kaiser 

Family Foundation, 2014.

15 See, for example, Brault, Matthew W. “Americans with Disabilities: 2010.” Current Population Reports No. P70-

131, US Census Bureau, Washington, DC, 2012. He uses the 2010 American Community Survey to estimate a 

disability prevalence rate of 10.2 percent among individuals ages 15 to 24 compared with a disability prevalence 

rate of 16.6 percent among individuals ages 21 to 64.

16 The 12th International Conference on Grey Literature at Prague issued the following definition in December 

2010: “Grey literature stands for manifold document types produced on all levels of government, academics, 

business and industry in print and electronic formats that are protected by intellectual property rights, of sufficient quality to be collected and preserved by library holdings or institutional repositories, but not controlled 

by commercial publishers—i.e., where publishing is not the primary activity of the producing body” Schöpfel, 

“Towards a Prague Definition of Grey Literature.”

17 Experts followed for review include Yaa Akosa Antwi, Department of Economics, Indiana University-Purdue University at Indianapolis; Matthew Brault, US Census Bureau; Joel Cantor, Institute for Health, Health Care Policy, 

and Aging Research, Rutgers University; Jonathan Gruber, Department of Economics, Massachusetts Institute 

of Technology; Stephen Kaye, School of Nursing, University of California, San Francisco; Andrew Mulcahy, 

RAND Corporation; MaryBeth Musumeci, Kaiser Family Foundation; Shirley Porterfield, School of Social Work, 

University of Missouri-Saint Louis; Brendan Saloner, Bloomberg School of Public Health, John Hopkins University; Benjamin Sommers, Department of Health Policy and Management, Harvard University; and Edith Walsh, 

Director of Aging, Disability, and Long-Term Care, RTI International.

18 See Centers for Medicare and Medicaid Services (CMS). “Approved Demonstrations—Signed MOUs.” Accessed September 10, 2015. https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-MedicaidCoordination/Medicare-Medicaid-Coordination-Office/FinancialAlignmentInitiative/ApprovedDemonstrationsSignedMOUs.html.Researchers need to submit a proposal to be able to use early release microdata and can 

only access this data at CDC’s Research Data Center in Hyattsville, Maryland.

19 National Center for Health Statistics. “National Health Interview Survey, 2014: Public-use data file and documentation.” Accessed September 10, 2015. http://www.cdc.gov/nchs/nhis/quest_data_related_1997_forward 

.htm or National Health Interview Survey. 2015. “2014 NHIS Questionnaire.” Division of Health Interview Statistics, National Center for Health Statistics, Hyattsville, MD. The CDC has released analyses of insurance coverage with tabulations based on age, gender, race or ethnicity, and income as a percentage of the FPL, but these 

analyses do not tabulate results on the basis of health status or disability. See Cohen, Robin A., and Michael E. 

Martinez. “Health Insurance Coverage: Early Release of Estimates From the National Health Interview Survey, 

January–March 2014.” U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, and National Center for Health Statistics, Washington, DC, September 2014. http://www.cdc.gov/nchs/

data/nhis/earlyrelease/insur201409.pdf.

20 See Iezzoni, Lisa I., Stephen G. Kurtz, and Sowmya R. Rao. “Trends in Mammography over Time for Women 

with and without Chronic Disability.” Journal of Women’s Health 24, 7 (2015): 593–601; Iezzoni, Lisa I., Jun Yu, 

90 National Council on Disability
Amy J. Wint, Suzanne C. Smeltzer, and Jeffrey L. Ecker. “Health Risk Factors and Mental Health among US 

Women with and without Chronic Physical Disabilities by whether Women Are Currently Pregnant.” Maternal 

and Child Health Journal 19, 6 (2015): 1364–75; Qin, Jin, Kristina A. Theis, Kamil E. Barbour, Charles G. Helmick, 

Nancy A. Baker, and Teresa J. Brady. “Impact of Arthritis and Multiple Chronic Conditions on Selected Life 

Domains—United States, 2013.”Morbidity and Mortality Weekly Report 64, 21 (2015): 578–82; Sharts-Hopko, 

Nancy C. “Mental Health Status Indicators and Vision Status among Adult Women Respondents to the 2010–

2013 National Health Interview Surveys.” Paper presented to Sigma Theta Tau International’s 26th International 

Nursing Research Congress, San Juan, Puerto Rico, July 23–27 2015; and Woodard, Kedra. “Association of 

Glucosamine and/or Chondroitin Use with Reports of Improved Health and Joint Pain among Individuals with 

Arthritis, National Health Interview Survey (NHIS) 2012.” Thesis for Master of Public Health, Georgia State University, 2015 for more information.

21 Studies on barriers to health care access typically show substantial barriers for people with disabilities. Recent studies include, for instance, Drainoni, Mari-Lynn, Elizabeth Lee-Hood, Carol Tobias, Sara S. Bachman, 

Jennifer Andrew, and Lisa Maisels. “Cross-Disability Experiences of Barriers to Health-Care Access: Consumer Perspectives.” Journal of Disability Policy Studies 17, 2 (2006): 101–15; Goin, Dana, and Sharon K. 

Long. “Health Care Access and Cost Barriers for Adults with Physical or Mental Health Issues: Evidence 

of Significant Gaps as the ACA Marketplaces Opened Their Doors.” Health Reform Monitoring Survey 

brief. Washington, DC: The Urban Institute, 2014; and Iezzoni, Lisa I., Austin B. Frakt, and Steven D. Pizer. 

“Uninsured Persons with Disability Confront Substantial Barriers to Health Care Services.” Disability and 

Health Journal 4, 4 (2011): 238–44.

22 Sommers, Benjamin D., Genevieve M. Kenney, and Arnold M. Epstein. “New Evidence on the Affordable Care 

Act: Coverage Impacts of Early Medicaid Expansions.” Health Affairs 33, 1 (2014): 78–87.

23 Specifically, they used Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, New York, Pennsylvania, 

and New Jersey as comparison states for Connecticut and Virginia as the comparison state for Washington, DC.

24 This group includes all respondents who answered yes to at least one disability-related question, which included items related to sensory, physical, mental, self-care, outside-of-home, and employment disabilities. 

About 20 percent of all people in the sample reported such health-related limitation.

25 In addition, most of the new enrollees in Washington, DC, were previously insured through a local program 

called Health Alliance.

26 Shartzer, Adele, Genevieve M. Kenney, and Stephen Zuckerman. “Quick Take: Uninsurance Rate Halved for 

Adults with Chronic Conditions.” Health Reform Monitory Survey. Washington, DC: Urban Institute, 2015. http://

hrms.urban.org/quicktakes/Uninsurance-Rate-Halved-for-Adults-with-Chronic-Conditions.html.

27 They define adults with chronic conditions as respondents who have one of the following conditions: asthma, 

chronic bronchitis, or chronic obstructive pulmonary disorder; diabetes; epilepsy; heart attack; heart disease; 

and high blood pressure.

28 See Long, Sharon K., Michael Karpman, Genevieve M. Kenney, Stephen Zuckerman, Douglas Wissoker, Adele 

Shartzer, Nathaniel Anderson, and Katherine Hempstead. “Taking Stock: Gains in Health Insurance Coverage 

under the ACA as of March 2015.” Health Reform Policy Survey brief. Washington, DC: The Urban Institute, 

2015. The decline in the uninsurance rate among all nonelderly adults is 7.5 percentage points in absolute terms, 

slightly higher than the 6.7 percentage point decline report by Shartzer, Kenney, and Zuckermann. The relative decline is nonetheless larger for people with chronic health conditions because their pre-implementation 

uninsurance rate in 2013 is lower.

29 See Centers for Medicare and Medicaid Services (CMS). “Approved Demonstrations—Signed MOUs.” 

Accessed September 10, 2015. https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-andMedicaid-Coordination/Medicare-Medicaid-Coordination-Office/FinancialAlignmentInitiative/Approved

DemonstrationsSignedMOUs.html.

30 Musumeci, MaryBeth. “Financial and Administrative Alignment Demonstrations for Dual Eligible Beneficiaries Compared: States with Memoranda of Understanding Approved by CMS.” Issue brief, Kaiser Family Foundation, 2014.

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 91
31 E-mail conversation with the primary investigator, Edith Walsh, May 4, 2015. For the evaluation plan, see Walsh, 

Edith G. “Measurement, Monitoring, and Evaluation of State Demonstrations to Integrate Care for Dual Eligible 

Individuals: Aggregate Evaluation Plan.” Report to the Center for Medicare and Medicaid Innovation, Centers for 

Medicare and Medicaid Services, 2013.

32 See Craver, Gerald, Meredith Lee, Sarah Broughton, Alison Cuellar, and Gilbert Gimm. “Commonwealth Coordinated Care: Notes from the Field—April 2014.” Virginia Department of Medical Assistance Services and George 

Mason University, 2014.

33 For example, a report from focus group interviews in Massachusetts included just three interviewees using 

LTSS services and none of them had met with a coordinator at that point. See Fishman, Jennie, and Alexis 

Henry. “The One Care Early Indicators Project—Preliminary Findings from a Focus Group with Early SelfSelected One Care Enrollees.” Report of focus group held in Boston, MA, December 16, 2013. University of 

Massachusetts Medical School. http://www.mass.gov/eohhs/docs/masshealth/onecare/eip-focus-group/eip

-focus-group-1-opt-ins-summary-report.pdf.

34 See Craver, Gerald, Meredith Lee, and Sarah Broughton. “Review of Commonwealth Coordinated Care Beneficiary Focus Groups (CY 2014).” PowerPoint document. Virginia Department of Medical Assistance Services, 

Richmond; Dickson, 2015; Virgil. “Future of Dual-Eligible Demonstrations Questioned Due to Low Enrollment.” 

Modern Healthcare. April 21 2015; and Ingram, Carolyn. “Engaging Consumers in Care.” Presentation to Cal 

MediConnect Providers Summit, Los Angeles, January 21 2015. www.calduals.org/wp-content/

uploads/2015/01/January-21-2015-Providers-Summit-Session-3A.pdf.

35 CMS approved California’s SPA under the condition that California would revise it to reflect the then-newly 

established institutional level-of-care eligibility criteria. The revised SPA went into effect July 1, 2013.

36 Sebelius, Kathleen. “Community First Choice: Interim Report to Congress.” Department of Health and Human 

Services, Office of the Secretary, Washington, DC, 2014. http://www.medicaid.gov/medicaid-chip-programinformation/by-topics/long-term-services-and-supports/home-and-community-based-services/downloads/

community-first-choice-interim-report-to-congress.pdf.

37 Ibid., p.9.

38 For a summary of the evaluation research plan, see Lowell, Kristina Hanson, and Gretchen Williams Torres. “Interim and Final Report to Congress on the Community First Choice Option.” Report for the Centers for Medicare and Medicaid Services. National Opinion Research Center, University of Chicago. Accessed September 10, 

2015. http://www.norc.org/Research/Projects/Pages/interim-and-final-report-to-congress-on-the-community-firstchoice-option.aspx.

39 A few studies report results separately for young adults ages 19 to 22 and those ages 23 to 25 because young 

adults under 23 years of age could typically stay on their parents’ insurance before 2010 if they were in college. 

In this report we ignore that distinction, focusing exclusively on results for adults ages 19 to 25.

40 O’Hara, Brett, and Matthew W. Brault. “The Disparate Impact of the ACA-Dependent Expansion across Population Subgroups.” Health Services Research 48, 5 (2013): 1581–92.

41 The relative decline is obtained by dividing the absolute decline (6 percentage points) by the initial uninsurance 

level (30 percentage points). McMorrow et al. reported a similar uninsurance rate of 30 percent to 35 percent 

for young adults in 2009 and the first two quarters of 2010. See McMorrow, Stacey, Genevieve M. Kenney, Sharon K. Long, and Nathaniel Anderson. “Uninsurance among Young Adults Continues to Decline, Particularly in 

Medicaid Expansion States.” Health Affairs 34, 4 (2015): 616–20.

42 Cantor, Joel C., Alan C. Monheit, Derek DeLia, and Kristen Lloyd. “Early Impact of the Affordable Care Act on 

Health Insurance Coverage of Young Adults.” Health Services Research 47, (2012): 1773–90; and Sommers, Benjamin D., and Richard Kronick. “The Affordable Care Act and Insurance Coverage for Young Adults.” Journal of 

the American Medical Association 307, 9 (2012): 913–14. Both studies use the Current Population Survey Annual 

Social and Economic (March) Supplement from the mid-2000s to 2010.

43 See Sommers, Benjamin D, Thomas Buchmueller, Sandra L Decker, Colleen Carey, and Richard Kronick. “The 

Affordable Care Act Has Led to Significant Gains in Health Insurance and Access to Care for Young Adults.” 

92 National Council on Disability
Health Affairs 32, (2013): 165–74. They report that the uninsurance rate dropped by 4.1 percentage points in the 

last quarter of 2010 and first quarter of 2011 compared with pre-implementation levels but by 7.2 percentage 

points when the researchers compared the second and third quarter of 2011 to pre-implementation levels.

44 Antwi, Yaa Akosa, Asako S. Moriya, and Kosali Simon. “Effects of Federal Policy to Insure Young Adults: Evidence from the 2010 Affordable Care Act’s Dependent-Coverage Mandate.” American Economic Journal: Economic Policy 5, 4 (2013): 1–28.

45 Saloner, Brendan, and Benjamin Lê Cook. “An ACA Provision Increased Treatment for Young Adults with Possible Mental Illnesses Relative to Comparison Group.” Health Affairs 33, 8 (2014): 1425–34. They identified individuals with potential mental health care needs as respondents who expressed serious mental distress in the 

previous year using a six-item scale that included questions about symptoms of depression and anxiety.

46 Porterfield, Shirley L., and Jin Huang. “Health Insurance and Access to Care among Young Adults with Disabilities: Impacts of the Affordable Care Act.” Paper presented at the 10th World Congress of the International 

Health Economics Association, Dublin, UK. 2014.

47 These results are currently not publicly available and were graciously shared by Shirley Porterfield in the form of 

presentation slides.

48 Antwi, Yaa Akosa, Asako S. Moriya, and Kosali Simon. “Effects of Federal Policy to Insure Young Adults: Evidence from the 2010 Affordable Care Act’s Dependent-Coverage Mandate.” American Economic Journal: Economic Policy 5, 4 (2013): 1–28.

49 Sommers, Benjamin D, Thomas Buchmueller, Sandra L Decker, Colleen Carey, and Richard Kronick. “The Affordable Care Act Has Led to Significant Gains in Health Insurance and Access to Care for Young Adults.” Health 

Affairs 32, 1 (2013): 165–74.

50 Antwi, Yaa Akosa, Asako S. Moriya, and Kosali Simon. “Effects of Federal Policy to Insure Young Adults: Evidence from the 2010 Affordable Care Act’s Dependent-Coverage Mandate.” American Economic Journal: 

Economic Policy 5, 4 (2013): 1–28.

51 Porterfield, Shirley L., and Jin Huang. “Health Insurance and Access to Care among Young Adults with Disabilities: Impacts of the Affordable Care Act.” Paper presented at the 10th World Congress of the International 

Health Economics Association, Dublin, UK, 2014.

52 Saloner, Brendan, and Benjamin Lê Cook. “An ACA Provision Increased Treatment for Young Adults with Possible Mental Illnesses Relative to Comparison Group.” Health Affairs 33, 8 (2014): 1425–34.

53 Sommers, Benjamin D, Thomas Buchmueller, Sandra L Decker, Colleen Carey, and Richard Kronick. “The Affordable Care Act Has Led to Significant Gains in Health Insurance and Access to Care for Young Adults.” Health 

Affairs 32, 1 (2013): 165–74.

54 Antwi, Yaa Akosa, Asako S. Moriya, and Kosali Simon. “Access to Health Insurance and the Use of Inpatient 

Medical Care: Evidence from the Affordable Care Act Young Adult Mandate.” NBER Working Paper No. 20202, 

National Bureau of Economic Research, Boston. MA, 2014.

55 Mulcahy, Andrew, Katherine Harris, Kenneth Finegold, Arthur Kellermann, Laurel Edelman, and Benjamin D. 

Sommers. “Insurance Coverage of Emergency Care for Young Adults under Health Reform.” New England Journal of Medicine 368, 22 (2013): 2105–12.

56 Scott, John W., Benjamin D. Sommers, Thomas C. Tsai, Kirstin W. Scott, Aaron L. Schwartz, and Zirui Song. 

“Dependent Coverage Provision Led to Uneven Insurance Gains and Unchanged Mortality Rates in Young Adult 

Trauma Patients.” Health Affairs 34, 1 (2015): 125–33.

57 Barbaresco, Silvia, Charles J. Courtemanche, and Yanling Qi. “Impacts of the Affordable Care Act Dependent 

Coverage Provision on Health-Related Outcomes of Young Adults.” NBER Working Paper No. 20148, National 

Bureau of Economic Research, Boston, MA, 2014.

58 Busch, Susan H., Ezra Golberstein, and Ellen Meara. “ACA Dependent Coverage Provision Reduced High Outof-Pocket Health Care Spending for Young Adults.” Health Affairs 33, 8 (2014): 1361–66.

59 Cantor, Joel C., Alan C. Monheit, Derek DeLia, and Kristen Lloyd. “Early Impact of the Affordable Care Act on 

Health Insurance Coverage of Young Adults.” Health Services Research 47, 5 (2012): 1773–-90.

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 93
60 Carlson, Daniel L., Ben Lennox Kail, Jamie L. Lynch, and Marlaina Dreher. “The Affordable Care Act, Dependent 

Health Insurance Coverage, and Young Adults’ Health.” Sociological Inquiry 84, 2 (2014): 191–209.

61 Kotagal, Meera, Adam C. Carle, Larry G. Kessler, and David R. Flum. “Limited Impact on Health and Access to 

Care for 19- to 25-Year-Olds Following the Patient Protection and Affordable Care Act.” JAMA Pediatrics 168, 11 

(2014): 1023–29.

62 O’Hara, Brett, and Matthew W. Brault. “The Disparate Impact of the ACA-Dependent Expansion across Population Subgroups.” Health Services Research 48, 5 (2013): 1581–92.

63 Sommers, Benjamin D., and Richard Kronick. “The Affordable Care Act and Insurance Coverage for Young 

Adults.” Journal of the American Medical Association 307, 9 (2012): 913–14.

64 Antwi, Yaa Akosa, Asako S. Moriya, and Kosali Simon. “Access to Health Insurance and the Use of Inpatient 

Medical Care: Evidence from the Affordable Care Act Young Adult Mandate.” NBER Working Paper No. 20202, 

National Bureau of Economic Research, Boston. MA, 2014.

65 Mulcahy, Andrew, Katherine Harris, Kenneth Finegold, Arthur Kellermann, Laurel Edelman, and Benjamin D. 

Sommers. “Insurance Coverage of Emergency Care for Young Adults under Health Reform.” New England Journal of Medicine 368, 22 (2013): 2105–12.

66 Scott, John W., Benjamin D. Sommers, Thomas C. Tsai, Kirstin W. Scott, Aaron L. Schwartz, and Zirui Song. 

“Dependent Coverage Provision Led to Uneven Insurance Gains and Unchanged Mortality Rates in Young Adult 

Trauma Patients.” Health Affairs 34, 1 (2015): 125–33.

67 Saloner, Brendan, and Benjamin Lê Cook. “An ACA Provision Increased Treatment for Young Adults with Possible Mental Illnesses Relative to Comparison Group.” Health Affairs 33, 8 (2014): 1425–34.

68 Specifically, because of the provision, young adults as a whole were more likely to have a primary care doctor 

and less likely to forgo medical care because of costs. See Barbaresco, Silvia, Charles J. Courtemanche, and 

Yanling Qi. “Impacts of the Affordable Care Act Dependent Coverage Provision on Health-Related Outcomes 

of Young Adults.” NBER Working Paper No. 20148, National Bureau of Economic Research, Boston, MA, 2014. 

General hospital visits increased by 3.5 percent, with mental health–related visits increasing by 9.0 percent. 

See Antwi, Yaa Akosa, Asako S. Moriya, and Kosali Simon. “Access to Health Insurance and the Use of Inpatient Medical Care: Evidence from the Affordable Care Act Young Adult Mandate.” NBER Working Paper No. 

20202, National Bureau of Economic Research, Boston. MA, 2014. There is also evidence that affordability of 

health care improved. Busch, Golberstein, and Meara examined large out-of-pocket expenses, defined as yearly 

expenses exceeding $500 or $1,500, and found that annual expenses exceeding $1,500 declined by 2.4 percentage points. See Busch, Susan H., Ezra Golberstein, and Ellen Meara. “ACA Dependent Coverage Provision 

Reduced High Out-of-Pocket Health Care Spending for Young Adults.” Health Affairs 33, 8 (2014): 1361–66. Only 

one study, by Kotagal et al., did not find evidence of greater access to health care (in terms of physician visits 

or self-reported affordability of prescription medication) because of the provision. See Kotagal, Meera, Adam 

C. Carle, Larry G. Kessler, and David R. Flum. “Limited Impact on Health and Access to Care for 19- to 25-YearOlds Following the Patient Protection and Affordable Care Act.” JAMA Pediatrics 168, 11 (2014): 1023–29.

69 Barbaresco, Silvia, Charles J. Courtemanche, and Yanling Qi. “Impacts of the Affordable Care Act Dependent 

Coverage Provision on Health-Related Outcomes of Young Adults.” NBER Working Paper No. 20148, National 

Bureau of Economic Research, Boston, MA, 2014.

70 Carlson, Daniel L., Ben Lennox Kail, Jamie L. Lynch, and Marlaina Dreher. “The Affordable Care Act, Dependent 

Health Insurance Coverage, and Young Adults’ Health.” Sociological Inquiry 84, 2 (2014): 191–209.

71 Scott, John W., Benjamin D. Sommers, Thomas C. Tsai, Kirstin W. Scott, Aaron L. Schwartz, and Zirui Song. 

“Dependent Coverage Provision Led to Uneven Insurance Gains and Unchanged Mortality Rates in Young Adult 

Trauma Patients.” Health Affairs 34, 1 (2015): 125–33.

72 Antwi, Yaa Akosa, Asako S. Moriya, and Kosali Simon. “Effects of Federal Policy to Insure Young Adults: Evidence from the 2010 Affordable Care Act’s Dependent-Coverage Mandate.” American Economic Journal: Economic Policy 5, 4 (2013): 1–28.

73 O’Hara, Brett, and Matthew W. Brault. “The Disparate Impact of the ACA-Dependent Expansion across Population Subgroups.” Health Services Research 48, 5 (2013): 1581–92.

94 National Council on Disability
74 Shartzer, Adele, Genevieve M. Kenney, and Stephen Zuckerman. “Uninsurance Rate Halved for Adults with 

Chronic Conditions.” Health Reform Monitory Survey quick take. Washington, DC: The Urban Institute, 2015.

75 This research project was approved by OHSU’s Institutional Review Board (IRB # 108883).

76 Blumberg, Linda J., John Holahan, Genevieve M. Kenney, Matthew Buettgens, Nathaniel Anderson, Hannah 

Recht, and Stephen Zuckerman. “Measuring Marketplace Enrollment Relative to Enrollment Projections: Update.” Health Policy Center policy brief. Washington, DC: The Urban Institute, 2014.

77 Blumberg, Linda J., John Holahan, Genevieve M. Kenney, Matthew Buettgens, Nathaniel Anderson, Hannah 

Recht, and Stephen Zuckerman. “Measuring Marketplace Enrollment Relative to Enrollment Projections: Update.” Health Policy Center policy brief. Washington, DC: The Urban Institute, 2014.

78 See Kaiser Family Foundation. “Section 1915(k) Community First Choice State Plan Option.” Accessed September 10, 2015. http://kff.org/medicaid/state-indicator/section-1915k-community-first-choice-state-plan-option/.

79 See Kaiser Family Foundation. “Financial and/or Administrative Alignment Demonstrations for Dual Eligible 

Individuals (or ‘Duals Demonstrations’).” Accessed September 10, 2015. http://kff.org/health-reform/stateindicator/financial-andor-administrative-alignment-demonstrations-for-dual-eligible-individuals-or-dualsdemonstrations-2/.

80 Braun, Virginia, and Victoria Clarke. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology

3. 2 (2006): 77–101.

81 Garfield, Rachel, Anthony Damico, Jessica Stephens, and Saman Rouhani. “The Coverage Gap: Uninsured Poor 

Adults in States That Do Not Expand Medicaid—An Update.” Issue brief, Kaiser Family Foundation, 2015.

82 “Guaranteed issue” and “community rating” refer respectively to prohibitions against denying coverage and 

varying premiums on the basis of consumers’ health status.

83 New York legislators passed a new consumer protection law to address this issue in April 2015. 

See for instance Scherzer, Mark. “New York’s New ‘Surprise Bill’ Law Rolls out New Health Insurance Protections for Consumers.” April 10, 2015. http://familiesusa.org/blog/2014/04/

new-york%E2%80%99s-new-surprise-bill-law-rolls-out-new-health-insurance-protections-consumers.

84 Sheedy, Kaitlin. “Tracking State Medicaid Expansion Alternative Benefit Plans.” Last modified December 31, 

2014. https://www.statereforum.org/Tracking-State-Medicaid-Alternative-Benefit-Plans.

85 CMS SPA approval letters were referred to for the following states: Arkansas, California, Delaware, Michigan, 

New Mexico, and West Virginia.

86 For Appendix Table 2, these states are Arizona, Colorado, the District of Columbia, Hawaii, and Kansas. In Appendix Table 3, these states are Arizona, Arkansas, California, the District of Columbia, and Rhode Island. In Appendix 

Table 4, these states are Connecticut, the District of Columbia, Kansas, Michigan, Rhode Island, and Washington.

87 So-called grandfathered plans are exempt from meeting EHB requirements. Such plans have not made any significant changes to their benefits or out-of-pocket cost-sharing rules since the ACA’s enactment.

88 HealthCare.gov. “Habilitative/Habilitation Services.” Accessed September 10, 2015. https://www.healthcare 

.gov/glossary/habilitative-habilitation-services/.

89 In states that have separate limits for habilitative and rehabilitative services, the total number of visits for habilitative and rehabilitative services combined is significantly greater than the combined total in states that retain a 

combined limit. This may result from state policymakers’ or insurers’ resistance to drastically decrease the total 

number of visits available for rehabilitation, compared to pre-ACA coverage. For example, suppose a state’s 

benchmark plan covers 40 rehabilitation visits but not habilitative services. Under current regulations, separate 

rather than combined limits apply to habilitative and rehabilitative services, and habilitative services must be 

comparable to coverage of rehabilitation. If that state wishes to retain the previous 40-visit coverage of rehabilitation, it will need to cover 40 visits for habilitative services as well.

90 The category in which autism services is listed can affect the total amount of coverage available. If autism services are listed separately from habilitative services, they are not subject to caps on habilitative services, a situation which increases the total volume of covered visits. On the other hand, if autism coverage has a separate 

cap that is more stringent than the cap for all habilitation services, some people with autism may be denied 

necessary care if autism services are treated as a separate category of coverage.

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 95
91 The Center for Consumer Information & Insurance Oversight (CCIIO). “Information on Essential Health Benefits 

(EHB) Benchmark Plans.” Centers for Medicare and Medicaid. Accessed September 10, 2015. www.cms.gov/

CCIIO/Resources/Data-Resources/ehb.html; and Centers for Disease Control and Prevention (CDC). “The National Health Interview Survey Early Release Program.” http://www.cdc.gov/nchs/nhis/releases.htm.

92 HealthCare.gov. “Rehabilitative/Rehabilitation Services.” Accessed September 10, 2015. www.healthcare.gov/

glossary/rehabilitative-rehabilitation-services/.

93 The first phase of cardiac or pulmonary rehabilitation is an inpatient program that includes analysis of daily 

functioning and postoperative education; the second phase transitions the patient from hospital to home and 

includes the development of a light aerobic exercise plan; and the third phase is an outpatient program that includes a more robust exercise program and long-term preventative goal setting.

94 Livermore, Gina, Denise Whalen, Sarah Prenovitz, Raina Aggarwal, and Maura Bardos. “Disability Data in National Surveys.” Report for the US Department of Health and Human Services, Office of Disability, Aging, and 

Long-Term Care Policy, Mathematica Policy Research, Washington, DC, 2011.

95 See US Census Bureau’s 2014 Release Schedule at www.census.gov/programs-surveys/acs/news/datareleases/2014/release-schedule.html for the 2014 ACS schedule. The 2014 Current Population Survey 

Annual Social and Economic Supplement Research Files, which are based on the 2013 survey, was released 

on January 13, 2015. See www.census.gov/newsroom/press-releases/2015/cb15-tps04.html.

96 Marlay, Matthew. “Introducing the New Survey of Income and Program Participation (SIPP).” Presentation to 

the 2015 annual meeting of the Population Association of America, San Diego, CA. 2015. The Panel Study for 

Income Dynamics also contains information about health insurance coverage and disability but is only 

conducted every other year, with the next wave being for 2015. http://www.census.gov/content/dam/

Census/programs-surveys/sipp/about/SIPP_Health_Insurance_Brochure_APPROVED.pdf?cssp=SERP.

97 See Centers for Disease Control and Prevention (CDC), 2015, “Disability and Health—Key Findings: Persons 

with Disabilities as an Unrecognized Health Disparity Population.” Last modified March 31, 2015. www.cdc.gov/

ncbddd/disabilityandhealth/features/unrecognizedpopulation.html

98 Krahn, Gloria L., Deborah Klein Walker, and Rosaly Correa-De-Araujo. “Persons with Disabilities as an Unrecognized Health Disparity Population.” American Journal of Public Health, 105, S2 (2015): S198–S206.

99 If available, administrative records from states (e.g., on Medicaid backlogs) might also shed light on some of 

these questions, as could survey data showing different outcomes for states pursuing different policies.

96 National Council on Disability