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January 19, 2016
Letter of Transmittal

January 19, 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 its report, Implementing the 

Affordable Care Act (ACA): A Roadmap for People with Disabilities. In many ways, ACA could be 

the single most important piece of legislation for people with disabilities since the Americans with 

Disabilities Act. For the disability community ACA is paramount to being able to make choices that 

lead to successful daily living on par with nondisabled Americans. 

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

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

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

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

and integration into all aspects of society. Consistent with NCD’s overall purpose, this first ACA 

report presents a map for approaching the provisions of this important federal law to support 

outcomes the disability community has prioritized. The first in a series of three ACA reports NCD is 

publishing, this report seeks to achieve the following goals: 

• Provide an overview of future healthcare implementation decisions by private insurers and 

state and federal officials, along with an analytical supplement exploring policy options important to people with disabilities; 

• Analyze key potential decision points for people with disabilities, advocates, and policymakers at the state and federal levels, and identify approaches to maximizing ACA’s positive 

impact on people with disabilities while limiting risks to the disability community that could 

result from unwise implementation choices; and

• Evaluate the policy options facing states as they consider expanding Medicaid, structuring 

Medicaid benefits for newly eligible adults, defining essential health benefits, implementing 

state-based exchanges, taking up the Community First Choice State Option, integrating 

Medicare and Medicaid funding and services for dually eligible adults, and other critical decisions.

Planning of healthcare processes and procedures must engage ACA beneficiaries in meaningful 

ways. The report findings show a need for targeted and continuous raising of awareness and 

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
increased advocacy on behalf of people with disabilities to boost positive outcomes involving 

healthcare and related home- and community-based services. These outcomes include providing 

access to inclusive education, training, employment/workforce retention mechanisms, and community 

participation choices. NCD’s recommendations in this first ACA report are grounded in an approach that 

breaks down “silos” at all levels—individual, local, state, tribal, and federal.

Finally, we urge the White House and Congress to engage stakeholders, including people with disabilities, 

as healthcare and related issues impacting the disability community are addressed now and in the future. 

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 (NCD) wishes to express its appreciation to Stan Dorn, J.D., Senior 

Fellow at the Urban Institute’s Health Policy Center, who worked collaboratively with NCD to develop 

the framework and conducted the research and writing for this report. We also thank Jane Wishner and 

Regan Considine of the Urban Institute for their comments on an earlier draft. 

National Council on Disability
Acronym Glossary

ABP Medicaid alternative benefit plan

ACA Patient Protection and Affordable Care Act

ACL Administration for Community Living, U.S. Department of Health and Human Services

AHRQ Agency for Healthcare Research and Quality

CCIIO Center for Consumer Information and Insurance Oversight

CFC Community First Choice

CHIP Children’s Health Insurance Program

CMS Centers for Medicare and Medicaid Services

EHB Essential health benefit

FDA Food and Drug Administration

FMAP Federal medical assistance percentage

FFM Federally Facilitated Marketplace

FFS Fee-for-service

FPL Federal poverty level

HCBS Home- and community-based services

HHS The U.S. Department of Health and Human Services

IAP Insurance affordability program

LTSS Long-term services and supports

MAGI Modified adjusted gross income

MCO Managed care organization

MMP Medicare-Medicaid Plan

MOU Memorandum / memoranda of understanding

NAIC National Association of Insurance Commissioners

NBPP Notice of Benefit and Payment Parameters

OCR The Office for Civil Rights of the U.S. Department of Health and Human Services

QHP Qualified health plan

SBM State-Based Marketplace

SHOP Small Business Health Options Programs (marketplaces for small businesses)

SNAP Supplemental Nutrition Assistance Program

SSA Social Security Administration

SSI Supplemental Security Income

T-MSIS Transformed Medical Statistical Information System

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

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Chapter 1. Foundational Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Federal Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Health Care Coverage, Access, and Disparities . . . . . . . . . . . . . . . . . . .  

Employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

LTSS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

State and Marketplace Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Health Care Coverage, Access, and Disparities . . . . . . . . . . . . . . . . . .  1

Employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

LTSS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Chapter 2. Recurring Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Federal Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Rules for Individual Market Plans (Including QHPs) . . . . . . . . . . . . . .  2

Financial Integration Demonstrations for Dual Eligibles . . . . . . . . . .  2

State Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Individual Health Insurance Plans . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

LTSS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

State Budget Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Chapter 3. Other Future Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Federal Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

State Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Analytic Supplement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Foundational Decisions...

Federal Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

State and Marketplace Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 1
Recurring Annual Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Federal Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

State Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Other Future Federal Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

EHB Updates . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Federal Enforcement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

2 National Council on Disability
Introduction

T

he Patient Protection and Affordable Care 

Act (ACA) is one of the most significant 

pieces of domestic legislation enacted 

in generations. Its impact has been widely 

debated, but people with disabilities have fallen 

outside much of the policy conversation. This is 

surprising, given the many ways that people with 

disabilities could benefit from or be harmed by 

ACA, depending on how it is implemented. 

This “roadmap” to ACA implementation helps 

to fill that gap. It identifies key policy choices, 

at both the federal and state levels, that could 

greatly affect people with disabilities. One goal of 

developing this inventory is to equip the disability 

community with information that it can use to 

assess its priorities and to develop an agenda for 

ACA implementation. 

The roadmap’s most basic organizational 

structure is chronological. It starts with 

foundational policy choices that shape basic 

ACA implementation, many of which have 

already been made (but which can typically be 

reexamined). The report goes on to flag key 

decisions slated for future time periods. Within 

each chronological category, the roadmap begins 

with federal decisions and then explores state 

policy choices. In some cases, the report sorts 

issues into three general categories:

■ Health care coverage, access, and disparities, 

the category into which most issues fall;

■ Health care issues that affect people with 

disabilities’ employment; and

■ Long-term services and supports (LTSS).

For many if not most of the policy choices 

identified in the roadmap, the stakes for people 

with disabilities and the resolution that is most 

favorable to the disability community are selfevident. In some cases, however, further analysis 

is required. To address the latter, an Analytic 

Supplement follows the body of this roadmap, 

identifying key contextual factors and exploring or 

developing policy options to meet the needs of 

people with disabilities.

Report Orientation

Roadmap— outlines key policy choices at 

state and local levels that can greatly help or 

harm people with disabilities

■ Health care coverage, access, disparities

■ Health care issues that affect employment

■ Long-term services and supports

Analytic Supplement—identifies key 

contextual factors and explores policy 

options

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 3
The Patient Protection and Affordable Care Act (ACA) is one of the 

most significant pieces of domestic legislation enacted in generations. 

Its impact has been widely debated, but people with disabilities have 

fallen outside much of the policy conversation. This is surprising, given 

the many ways that could benefit from or be harmed by ACA, depend-

[ ing on how it is implemented. 

4 National Council on Disability
Chapter 1. Foundational Decision

Policy decisions that establish the basic 

terms on which a particular coverage 

system operates are classified here as 

“foundational.” Many of these decisions have 

already been made, but they can often be 

reopened for discussion—indeed, some are 

expressly slated for future review, as is made 

clear later. Moreover, the federal policy choices 

described here provide an essential context 

for understanding the decisions that now face 

states, many of which remain open or subject to 

change.

Federal Decisions

Health Care Coverage, Access, 

and Disparities

The Federal Government has made important 

implementation choices in several areas 

that involve coverage, access to care, and 

disparities.

Data Gathering

Gathering and reporting data about people with 

disabilities’ receipt of care can be important 

when assessing whether policies and practices 

have a disparate adverse impact on people with 

disabilities. Section 4302 of ACA thus required 

significant collection of data about possible 

disparities based on “race, ethnicity, sex, primary 

language, and disability status.”1 This involved:

■ Data collection for “any federally conducted 

or supported health care or public health 

program, activity, or survey,”2 along with 

required analysis of the gathered data 

“to detect and monitor trends in health 

disparities,” making both the analyses and 

data themselves publicly available,3 all to the 

extent supported by direct appropriations.4

These data collection provisions included 

a special requirement to conduct a 

provider survey that assesses people with 

disabilities’ access to care and treatment.5

■ Specific application of these data collection 

requirements to Medicaid and the Children’s 

Health Insurance Program (CHIP), with 

required reports to Congress and the 

implementation of approaches found 

effective in such reports.6

The U.S. Department of Health and Human 

Services (HHS) adopted guidance on October 31, 

2011, governing new federal surveys and existing 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 5
surveys that undergo major revisions.7

 They must 

ask, at a minimum, the questions about disability 

in the box found on this page.8

In addition to incorporating these questions 

into new federal surveys and revisions to existing 

surveys, HHS has required state Medicaid 

and CHIP programs to provide the Centers for 

Medicare and Medicaid Services (CMS) with 

disability status information about each enrollee. 

This will be done through the Transformed 

Medical Statistical Information System (T-MSIS), 

a new repository for Medicaid and CHIP data, 

which is being implemented on a rolling basis, 

by state.9 Concerning another data issue that 

affects the disability community, on July 17, 2015, 

the HHS Administration for Community Living 

Disability Questions from the U.S. Department of Health and Human 

Services Implementation Guidance on Data Collection Standards (2011)

1. Are you deaf or do you have serious difficulty hearing?

a. ____ Yes

b. ____No

2. Are you blind or do you have serious difficulty seeing, even when wearing glasses?

a. ____ Yes

b. ____No

3. Because of a physical, mental, or emotional condition, do you have serious difficulty 

concentrating, remembering, or making decisions? (5 years old or older)

a. ____Yes

b. ____No

4. Do you have serious difficulty walking or climbing stairs? (5 years old or older)

a. ____Yes

b. ____No

5. Do you have difficulty dressing or bathing? (5 years old or older)

a. ____Yes

b. ____ No

6. Because of a physical, mental, or emotional condition, do you have difficulty doing errands 

alone such as visiting a doctor’s office or shopping? (15 years old or older)

a. ____Yes

b. ____ No

6 National Council on Disability
(ACL) released a draft report for public comment 

describing proposed quality measures for HCBS, 

developed by the National Quality Forum.10

Notwithstanding these important steps, HHS 

has not implemented ACA’s above-described 

special requirements to survey providers nor 

assessed the care people with disabilities receive. 

Moreover, the disparities reports released thus far 

by the Agency for Healthcare Research and Quality 

(AHRQ) have focused 

primarily on racial and 

ethnic disparities.11

A recent report also 

discusses other 

“priority populations,” 

which do not include 

adults with disabilities; 

they do, however, include people “with special 

health care needs.” Among the latter are “children 

with special health care needs” and such adult 

groups as the obese, smokers, people diagnosed 

with arthritis, and hospice patients.12

Marketplace Accessibility 

Health insurance Marketplaces (sometimes 

called “Exchanges”) are a central focus of 

ACA enrollment into all insurance affordability 

programs (IAP). Consumers can sign up for 

a qualified health plan (QHP) offered in the 

Marketplace, potentially qualifying for subsidies 

if their incomes are between 100 and 400 

percent of the federal poverty level (FPL). Those 

who seek coverage at the Marketplace are 

also evaluated for potential Medicaid and CHIP 

eligibility and enrolled if they qualify.

In helping consumers sign up for coverage, 

Marketplaces must be accessible to people with 

disabilities in the overall furnishing of information; 

the operation of Web sites; the provision of 

consumer assistance, outreach, and education; 

notices; and “the provision of auxiliary aids and 

services at no cost to the individual.”13 QHPs 

themselves must likewise provide materials 

in accessible form for “all information that is 

critical for obtaining health insurance coverage or 

access to health care services through the QHP, 

including applications, forms, and notices.”14

For Federally Facilitated Marketplaces (FFMs), 

which as of June 2015 served residents of 37 

states,15 federal 

regulations are more 

specific in describing 

the accessibility 

requirements that 

Navigators and certain 

other consumer 

assistance programs 

must satisfy.16 The regulations require such 

programs to:

Ensure that any consumer education materials, Web sites, or other tools utilized for consumer assistance purposes, are accessible 

to people with disabilities, including those 

with sensory impairments, such as visual or 

hearing impairments, and those with mental 

illness, addiction, and physical, intellectual, 

and developmental disabilities;

Provide auxiliary aids and services for individuals with disabilities, at no cost, when 

necessary or when requested by the consumer to ensure effective communication, 

with use of friends and family only when 

requested by the consumer as the preferred 

alternative to an offer of other auxiliary aids 

and services;

Provide assistance to consumers in a location and in a manner that is physically and 

otherwise accessible;

Notwithstanding these important 

steps, HHS has not implemented 

ACA’s .. special requirements to surv

providers nor assessed the care people 

with disabilities receive

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 7
Ensure that authorized representatives are 

permitted to assist an individual with a disability to make informed decisions;

Acquire sufficient knowledge to refer people 

with disabilities to local, state, and federal 

long-term services and supports programs 

when appropriate; and

Be able to work with all individuals regardless of age, disability, or culture, and seek 

advice or experts when needed.17

These more specific requirements do not 

govern State-Based Marketplaces (SBMs). 

However, nothing prevents an SBM from using 

the accessibility practices and standards that 

CMS approved for the FFM. SBM and FFM 

states could also extend some or all of these 

standards to certified application counselors, 

who do not receive Marketplace funding for 

their work. In all states, such counselors must 

provide information in a manner that is accessible 

to individuals with disabilities, either directly or 

through an appropriate referral to a Navigator, 

certain non-Navigator assistance personnel, or to 

the Marketplace call center.18

ACA regulations involving consumer 

information and network adequacy do not 

specifically address the accessibility to people 

with disabilities of providers in QHP networks.19

The Center for Consumer Information and 

Insurance Oversight (CCIIO), the agency within 

CMS that oversees Marketplaces, chose neither 

(1) to require insurers to include information 

about physical accessibility in the directories that 

identify network providers; nor (2) to establish 

accessibility to people with disabilities as a 

standard for QHP network adequacy, beyond 

the general requirement that networks must be 

“sufficient in number and types of providers, 

including providers that specialize in mental 

health and substance abuse services, to assure 

that all services will be accessible without 

unreasonable delay.”20 In a regulatory preamble, 

CCIIO analyzed provider directory issues as 

follows: 

Comment: Commenters supported having 

issuers list detailed information in provider 

directories about physical accessibility for individuals with disabilities to help consumers 

choose plans and providers. Some sought 

information about exam table access, transfer assistance, and wheelchair access. One 

commenter urged caution in this area out 

of concern that including information on 

accessibility features for certain providers 

could be read to imply that other providers 

need not offer such features, even though 

they are legally obligated to do so pursuant 

to the Americans with Disabilities Act and 

section 504 of the Rehabilitation Act.

Response: We appreciate the complexity 

of this topic, and do not intend to issue 

additional regulation on this topic at this 

Marketplaces must be accessible 

to people with disabilities in the: 

■ Overall furnishing of information

■ Operation of websites

■ Provision of consumer assistance, 

outreach, and education

■ Notices

■ Provision of auxiliary aids and services at 

no cost to the individual

8 National Council on Disability
time. We urge all issuers and providers to 

continue to ensure that they are providing 

full and equal access to all covered services 

to all enrollees, including those people with 

disabilities, and we remind them of the obligation to adhere to the requirements of the 

Americans with Disabilities Act and section 

504 of the Rehabilitation Act. Issuers are 

encouraged to consult relevant Department 

of Justice guidance on accessibility of medical providers and effective communications 

at www.ada.gov. We will continue to monitor this issue.21

Other laws require health care providers to 

furnish services that are accessible to people 

with disabilities; these duties are not framed as 

obligations for health plans to assure network 

adequacy. Applicable statutes include pre-ACA 

laws, such as the Americans with Disabilities 

Act and Section 504 of the Rehabilitation Act. 

They also include new enactments in ACA, 

like Section 4203, which creates voluntary 

standards for accessible medical diagnostic 

equipment,22 as well as the anti-discrimination 

laws described next.

Discrimination

ACA and its implementing regulations 

incorporate a number of anti-discrimination 

provisions that protect people with disabilities, 

including:

■ ACA Section 1557(b), which provides that 

an “individual shall not, on the ground 

prohibited under . . . section 504 of the 

Rehabilitation Act of 1973 (29 U.S.C. 794), be 

excluded from participation in, be denied the 

benefits of, or be subjected to discrimination 

under, any health program or activity” 

funded or administered under ACA;23

■ ACA Sections 1302(b)(4)(B) and (C), which 

provide that the definition of essential health 

benefits (EHBs) shall “not make coverage 

decisions . . . or design benefits in ways that 

discriminate against individuals because 

of their . . . disability” and shall “take into 

account the health care needs of diverse 

segments of the population, including . . . 

people with disabilities;” 

■ 42 CFR 156.125(a), which forbids private 

insurers (including QHPs) from offering a 

“benefit design, or the implementation of 

its benefit design” that “discriminates based 

on an individual’s age, expected length of 

life, present or predicted disability, degree of 

medical dependency, quality of life, or other 

health conditions;”24 and

■ 45 CFR 155.120, which requires states 

and exchanges to comply with applicable 

nondiscrimination statutes and which 

prohibits discrimination based on disability. 

Anti-discrimination provisions 

of ACA and its implementing 

regulations: 

■ ACA Section 1557(b)—nondiscrimination in 

health programs or activities

■ ACA Sections 1302(b)(4)(B) and (C)—

nondiscrimination in coverage decisions 

and benefit design

■ 42 CFR 156.125(a)—nondiscrimination in 

benefit design

■ 45 CFR 155.120—nondiscrimination by 

states and exchanges

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 9
HHS has made important decisions interpreting 

these provisions:25

■ The Department characterized Section 

1557 as effective on enactment, without 

any need to promulgate regulations. 

The HHS Office for Civil Rights (OCR) 

has already begun enforcing this law by 

accepting, investigating, and taking action 

on administrative complaints.26 In its August 

1, 2013 Request for Information to inform 

its rulemaking under Section 1557, OCR 

explained how Section 1557 changed 

prior law:

In developing a regulation to implement Section 1557, the Department 

recognizes that Section 1557 builds 

on a landscape of existing civil rights 

laws. For example, the prohibitions 

against discrimination on the grounds 

of race, color, national origin, age, and 

disability in Title VI, the Age Act, and 

Section 504, respectively, apply to all 

programs and activities covered by 

those statutes, including those related 

to health; however, the prohibition of 

sex discrimination in Title IX applies 

only to education programs and activities of covered entities. Section 

1557 is the first Federal civil rights 

statute that prohibits sex discrimination in health programs and activities 

of covered entities. Section 1557 also 

applies to entities created under Title 

I of the Affordable Care Act, such as 

the Health Insurance Marketplaces. 

Additionally, Section 1557 is the first 

broad based Federal civil rights statute 

incorporating the grounds prohibited 

by four distinct civil rights statutes.27

More recently, HHS issued proposed 

regulations that describe the requirements 

of Section 1557 in much more detail.28

The comment period ended on 

November 9, 2015.

■ In a regulatory preamble, CMS explained 

that the anti-discrimination provisions of 

42 CFR 156.125 forbid “benefit designs 

that . . . would discourage enrollment by 

individuals based on age or based on health 

conditions.” The preamble listed several 

examples of such discriminatory benefit 

designs: “(1) Attempts to circumvent 

coverage of medically necessary benefits 

by labeling the benefit as a ‘pediatric 

service,’ thereby excluding adults; (2) refusal 

to cover a single-tablet drug regimen or 

extended release product that is customarily 

prescribed and is just as effective as a multitablet regimen . . . ; and (3) placing most or 

all drugs that treat a specific condition on 

the highest cost tiers.”29

Essential Health Benefits: Habilitative 

Services 

ACA lists as “essential health benefits” ten 

service categories; the EHB requirement governs 

most individual insurance, small group plans, 

and expanded Medicaid coverage of low-income 

adults.30

One EHB benefit category is “rehabilitative 

and habilitative services and devices.”31 Because 

of major changes to federal policy in February 

2015, as well as the importance of habilitative 

services to people with disabilities, this section 

focuses specifically on that set of essential health 

benefits.

As with other EHB categories, the amount, 

duration, and scope of required habilitative 

10 National Council on Disability
services is based on the “benchmark” employer 

plan the state chooses from a list of federallyspecified options. Such options include highly 

subscribed small-group plans and health 

maintenance organizations within the state, as 

well as coverage offered to state and federal 

employees. 

Some states have benchmark plans that 

do not cover habilitative services. In such 

cases, the state itself may define the scope 

of covered habilitative services, provided 

that “the State definition complies with EHB 

policies, including nondiscrimination.”32 If the 

state does not define “habilitative services,” 

the following federal definition of habilitative 

services and devices applies: “[H]ealth care 

services and devices that 

help a person keep, learn, 

or improve skills and 

functioning for daily living 

(habilitative services). 

Examples include therapy 

for a child who is not 

walking or talking at the 

expected age. These 

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.”33

The federal definition also 

■ forbids each plan from imposing limits on 

habilitative services that are “less favorable 

than” the plan’s limits on rehabilitative 

services; and 

■ for coverage in 2017 and beyond, bars plans 

from imposing a single, combined limit 

on habilitative and rehabilitative services. 

Instead, any limits must apply separately to 

each service category.34

If the benchmark plan covers some habilitative 

services but falls short of the federal definition, 

the state must “supplement the benchmark plan,” 

according to CMS, since the federal definition 

comprises the “minimum for States to use when 

determining whether plans cover habilitative 

services.” In explaining the meaning of this federal 

definition, CMS described the difference between 

habilitative and rehabilitative services:

Habilitative services, including devices, are 

provided for a person to attain, maintain, or 

prevent deterioration of a skill or function 

never learned or 

acquired due to a 

disabling condition. 

Rehabilitative services, including devices, on the other 

hand, are provided 

to help a person 

regain, maintain, 

or prevent deterioration of a skill or 

function that has 

been acquired but 

then lost or impaired due to illness, injury, 

or disabling condition.35

Employment

ACA did not change previous Medicaid options, 

such as for “buy-in” coverage, that facilitate 

people with disabilities’ employment. These 

options cover LTSS, often on a sliding scale, at 

incomes above generally applicable Medicaid 

thresholds. The Federal Government has not 

released any regulations or guidance exploring 

ACA did not change previous 

Medicaid options, such as for ‘buyin’ coverage... [b]ut [t]he Feder

Government has not released any 

regulations or guidance exploring 

how Marketplaces could help a 

larger proportion of the eligible 

population sign up for such pre-ACA 

coverage categories

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 11
how Marketplaces could help a larger proportion 

of the eligible population sign up for such preACA coverage categories. 

LTSS

ACA contained numerous provisions that 

expanded state Medicaid programs’ options 

and incentives to cover LTSS for people with 

disabilities, particularly home- and communitybased services (HCBS). Many of these 

provisions have received extensive analysis 

elsewhere, including in NCD’s other work.36

In discussing federal foundational decisions, 

this section of the roadmap focuses on one 

discrete area: integrating Medicare and 

Medicaid coverage for low-income people 

with disabilities who are “dual eligibles,” 

simultaneously qualifying for full benefits under 

both programs. Later, the report discusses 

state implementation decisions involving both 

integrated coverage for dual eligibles and ACA’s 

“Community First Choice” option for state 

Medicaid programs.

Section 2602 of ACA established the Federal 

Coordinated Health Care Office (“Medicare 

Medicaid Coordination Office”). The Office has 

authorized demonstration projects to test two 

models for “expanding access to seamless, 

integrated programs” by combining Medicare 

and Medicaid: 

■ A capitated model, through which “CMS, 

the State, and health plans . . . enter into a 

three-way contract” and “participating plans 

. . . receive a prospective blended payment 

to provide comprehensive, seamless 

coverage” with “actuarially developed 

blended rates that . . . provide a new 

savings opportunity for both States and the 

Federal Government;” and

■ A managed fee-for-service (FFS) model, 

under which “CMS and a State will enter 

into agreement whereby the State would 

be eligible to benefit from savings resulting 

from initiatives that improve quality and 

reduce costs for both Medicaid and 

Medicare.”37

To participate in any version of this 

“financial alignment” initiative, a state must 

meet standards and conditions that include the 

following:

■ The state model “ensures . . . the provision 

and coordination of all necessary Medicare 

and Medicaid covered services;”

■ The state care model includes mechanisms 

for “person-centered coordination of 

care” and “improving care transitions 

(e.g., between providers and settings) to 

maximize continuity of care;”

■ The state provides “evidence of ongoing 

and meaningful stakeholder engagement 

during the planning phase and has 

incorporated such input into its proposal” 

and “established a plan for continuing to 

gather and incorporate stakeholder feedback 

on an ongoing basis;”

■ The state establishes various beneficiary 

protections “to ensure beneficiary health 

and safety and beneficiary access to high 

quality health and supportive services 

necessary to meet the beneficiary’s needs,” 

including “meaningful beneficiary input 

processes,” the development of accessible 

beneficiary education materials, ensuring 

physical accessibility options within 

provider networks, and full “grievance 

12 National Council on Disability
and appeals rights under Medicare and/or 

Medicaid;”

■ The state demonstrates that it has or can 

build the capacity needed to implement and 

oversee the model; 

■ The provider network must “ensure 

adequate access to medical and supportive 

service providers that are appropriate for 

and proficient in addressing the needs of 

the target population;”

■ The state has systems in place for “oversight 

and monitoring to ensure continuous quality 

improvement,” which include measures 

of “experience, access to and quality of 

all covered services (including behavioral 

health and long term services and supports), 

utilization, etc., in order to promote 

beneficiaries receiving high quality care;”

■ The state provides CMS with data “to 

inform program management, rate 

development and evaluation,” including 

beneficiary-level “expenditure data and 

covered benefits, . . . including available 

encounter data in capitated models;”

■ The state identifies enrollment targets, with 

strategies for beneficiary education and 

outreach;

■ Financial modeling demonstrates that the 

state’s model “will achieve meaningful 

savings while maintaining or improving 

quality;” and

■ The state provides specified public notice 

and comment opportunities, including 

“appropriate tribal consultation.”38

Under both models, CMS enters into 

memoranda of understanding (MOU) with 

participating states that further detail state 

commitments. CMS also has expressed 

an openness to models beyond the two 

mentioned above. As of July 2015, such MOUs 

are publicly available for nine states operating 

capitated projects, two states using a managed 

FFS model, and one state taking a different 

approach.39

In addition, each state participating in the 

demonstration must operate an ombudsperson 

program to serve beneficiaries in the 

demonstration.40 The requirement to have an 

ombudsperson appears in each of the MOUs 

between states and CMS, as well as, in capitated 

states, the three-way contracts among CMS, the 

plan, and the state.

State and Marketplace Decisions

This section identifies foundational decisions 

that face state-level agencies. Unlike the 

preceding discussion of specific federal 

policy choices that apply nationwide, this 

portion of the roadmap analyzes policy 

choices that are being made differently in 

different states. It thus raises many issues 

in the form of questions. Such framing can 

help the disability community identify key 

implementation decisions to track in monitoring 

state implementation of ACA, focusing scarce 

resources on the most important issues. Note 

that many decisions involving the Marketplace 

are made at the state level only in states with 

SBMs; FFM operations are directed by CMS, 

rather than state officials. 

Health Care Coverage, Access, and 

Disparities

State policymakers face questions that include 

but also go beyond the issue categories used 

earlier to organize federal foundational issues:

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 13
■ Data 

❍ Plan-level data. How (if at all) are 

Medicaid managed care organizations 

(MCOs) and Marketplace QHPs 

required to collect and report 

data about the disability status of 

enrollees? How do the state and the 

Marketplace use those data to spot 

potential gains and challenges for 

people with disabilities (including 

possible disability-based disparities)? 

Are those data made publicly available 

in de-identified form so that patient 

and advocacy groups can conduct 

their own independent analyses? 

Are reports describing plan access 

and quality tabulated in terms of 

members’ disabilities?

❍ Agency-level data. How (if at all) do the 

Medicaid program and the Marketplace 

gather data about the disability status 

of applicants and enrollees? How do 

the state and the Marketplace use 

those and other data to spot potential 

gains and challenges for people with 

disabilities (including possible disabilitybased disparities)? Are those data made 

publicly available in de-identified form 

so that patient and advocacy groups can 

conduct their own independent analyses? 

Are reports describing quality and access 

tabulated in terms of peoples’ disabilities?

■ Marketplace accessibility

❍ Enrollment systems. When consumers 

seek health coverage through the 

Marketplace, to what extent are 

information and enrollment services fully 

accessible to people with disabilities, 

including through the Marketplace Web 

site, call center, forms, notices, public 

education materials, and consumer 

assistance programs? 

❍ QHP information. When consumers are 

choosing QHPs, does the Marketplace 

provide information about QHP provider 

networks and prescription drug 

formularies (including applicable costsharing levels) that is important to people 

with disabilities? Such information could 

include, for example, general accessibility 

of services, accessibility of medical 

equipment, prior receipt of disability 

competency training, and network 

inclusion of specialists needed by people 

with disabilities.

■ Discrimination

❍ Monitoring QHPs. How (if at all) are 

the state insurance regulator and 

Marketplace monitoring and enforcing 

the prohibition against marketing 

practices and benefit designs that 

have the effect of discouraging the 

enrollment of individuals with significant 

health needs? How are other ACA 

nondiscrimination requirements being 

monitored and enforced? How and where 

is this information being made publicly 

available?

■ EHBs

❍ The state’s chosen benchmark plan. 

How does this plan cover services 

that are particularly important to many 

people with disabilities, including 

rehabilitative and habilitative services 

and devices, durable medical equipment, 

prescription drugs, and behavioral health 

care? (Exploration of this question 

needs to include limits, exclusions, 

14 National Council on Disability
and exceptions.) Are aspects of the 

benchmark plan inconsistent with federal 

law? CMS has posted information about 

the benchmark plans that are effective 

starting in 2017.41

❍ Modifications to benchmark benefits. 

In defining the scope of each EHB 

service category, how (if at all) has the 

state modified and supplemented the 

benchmark plan’s benefits when required 

to meet ACA’s requirements, including 

for nondiscrimination and mental health 

parity? Has the state limited QHPs’ ability 

to substitute benefits for the particular 

services covered by the benchmark plan?42

❍ Habilitative services. Has the state 

defined “habilitative services and 

devices,” for EHB purposes?

■ If so, is the state definition narrower 

than the federal regulatory definition? 

Is it missing protections in the federal 

definition (e.g., separate limits for 

habilitative and for rehabilitative 

services, starting in 2017)? 

■ If the state has not promulgated its 

own definition, and the benchmark 

plan covers habilitative services, does 

that benchmark coverage meet the 

federal definition? If not, how (if at all) 

has the state modified that coverage 

to fit the federal definition? And how 

is the state monitoring QHPs to 

ensure that their coverage of this EHB 

category fits the federal definition? 

■ QHPs

❍ Network adequacy. Do the state’s 

adequacy standards that govern QHP 

provider networks43 ensure the sufficient 

availability of health care providers who are 

fully accessible and who meet the health 

diagnosis and treatment needs of people 

with disabilities? If people with disabilities 

must go outside QHP networks to obtain 

essential care, what mechanisms ensure 

that they can obtain this care with the 

same limitations on cost-sharing amounts 

that apply within the provider network? 

(Such limitations include maximum, annual 

out-of-pocket costs and income-based 

cost-sharing reductions.) 

■ Expanded Medicaid eligibility for low-income 

adults

❍ If the state has implemented the ACA 

option to expand Medicaid eligibility and 

cover all non-elderly adults up to 

138 percent FPL, additional questions 

arise:

■ Covered benefits. Has the state aligned 

its alternative benefit plan (ABP) for 

newly eligible, low-income adults with 

benefits that other adult Medicaid 

beneficiaries receive? If not, how 

do ABP-covered services differ from 

benefits offered to other Medicaid 

adults, including those who need LTSS?

■ Exemptions from benefit limitations. 

If ABP-covered services are different 

from those provided to other adults, 

what system has the state created 

through which low-income adults can 

qualify for standard adult Medicaid 

benefits, including by showing 

“medical frailty”? How does the 

state define this term? What process 

has the state put in place to identify 

medically frail adults and assure that 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 15
they can receive standard benefits, 

rather than ABP benefits? How does 

the state notify consumers who could 

potentially qualify for an exemption 

from ABP benefit limitations? What 

steps must consumers take to receive 

the exemption?

■ Additional benefits for targeted 

groups. Whether or not the state has 

aligned benefits for newly eligible 

adults with those covered for other 

adults, has the state implemented 

the option provided by ACA to furnish 

enhanced services to high-need 

subpopulations among adults who 

qualify because of income at or below 

138 percent FPL?44

■ Renewal. How is the state 

approaching Medicaid administrative 

renewal for people with disabilities 

whose income comes largely or 

entirely from highly stable sources, 

such as Supplemental Security 

Income (SSI) and accompanying state 

supplements or from other disabilitybased payments?

■ Premium assistance. How is 

the state using available options 

under ACA to give Medicaid 

beneficiaries with disabilities 

access to Marketplace QHPs, with 

supplemental Medicaid coverage that 

provides additional benefits and costsharing protections? 

Employment

State Medicaid programs face key issues 

that affect people with disabilities’ capacity to 

progress in the workplace:

■ Maintaining buy-in coverage. Has the 

state retained Medicaid buy-in coverage 

and other pre-ACA options to help people 

with disabilities progress up the economic 

ladder? Such options permit people with 

disabilities, even as income rises, to retain 

the LTSSs that are needed for employment. 

Often, these Medicaid services are 

available on a sliding scale, with payments 

proportioned to beneficiary income. 

■ Improving the effectiveness of buy-in 

coverage. Now that the Marketplace is 

serving as a portal to health coverage for 

state residents of all income levels, is the 

state pursuing any innovative strategies 

for using the Marketplace to increase the 

number of eligible people with disabilities 

who participate in buy-in or similar Medicaid 

programs? 

LTSS

The LTSS topics discussed here involve two 

sets of issues: demonstration projects that 

align Medicaid and Medicare for dual eligibles, 

as discussed earlier; and the Community First 

Choice (CFC) Medicaid option, created by ACA, 

for covering HCBS.

Financial Alignment Initiatives for 

Medicare-Medicaid Eligibles

Is the state pursuing a demonstration program 

to align financing and service delivery for dual 

eligibles that involves managed FFS care? If so:

■ What monitoring and reporting requirements 

are in place? 

■ What quality measures are being used? 

How are they being applied? How does the 

state collect, track, and report data on key 

16 National Council on Disability
quality metrics, encompassing outcome 

and process measures? These include 

beneficiary utilization of, experience with, 

access to, and quality of all covered services 

(including LTSS and behavioral health). How 

well adapted are the state’s metrics to the 

unique needs of people with disabilities 

and the goal of prioritizing receipt of LTSS 

in home- and community-based settings, 

rather than institutions? 

■ For what functional and operational 

areas has the state delegated content 

development to providers? What is the 

state’s oversight approach? 

■ How will the federally-sponsored evaluation 

be used to guide midcourse corrections 

and improvements? To what extent will 

information from the evaluation be made 

publicly available? 

■ Will data the state provides to CMS 

be made available to independent 

researchers and community groups, in deidentified form, for analysis? If any such 

data are currently available, what do they 

show? 

■ How was the disability community involved 

(if at all) in developing the Demonstration 

Agreement between the state and 

CMS? In other aspects of designing 

the Demonstration? How did the state 

incorporate community input?

■ Does the demonstration provide additional 

services or cost-sharing protections to 

beneficiaries, beyond what they would 

receive under the standard configuration 

of Medicare and Medicaid? Are otherwise 

applicable Part D cost-sharing amounts 

waived? What about other Medicare costsharing amounts? 

Is the state pursuing a demonstration program 

to align financing and service delivery for dual 

eligibles that includes capitation of LTSS? If so, 

the above questions should be supplemented 

with the following: 

■ What specific mechanisms does the 

care model include for person-centered 

coordination of services and for improving care 

transitions to maximize continuity of care?

■ Are meaningful input processes in place 

through which, on an ongoing basis, the 

disability community can participate in the 

demonstration program’s development and 

oversight? For example, are beneficiary 

representatives involved in plan governing 

bodies, and has the state established 

a beneficiary advisory board for the 

overall demonstration? Are beneficiary 

representatives included in multi-stakeholder 

boards that help shape the demonstration? 

■ How does the state keep beneficiaries 

(including people with disabilities) informed 

of changes to policy and practice involving 

the demonstration? 

■ What protections (such as enrollment and 

disenrollment procedures, procedures for 

ensuring access to and continuity of care, 

etc.) has the state established to ensure 

people with disabilities’ health, safety, and 

access to high-quality, necessary, culturally 

competent services and supports? What 

internal and external ombudsperson, 

grievance, and appeals mechanisms are 

in place? Do uniform requirements govern 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 17
plan complaints and internal appeals? Are 

“ombuds” programs and other consumer 

assistance entities adequately staffed to 

handle inquiries from consumers, including 

those regarding LTSS? Are such organizations 

limited in their independence and authority to 

act on behalf of aggrieved consumers? 

■ Are all enrollment and marketing materials 

accessible and understandable to the target 

beneficiary population, including people 

with disabilities? Are they communicated in 

alternate formats as needed? Do disabilityrights advocates review such materials 

before their approval and use?

■ Are measures in place ensuring the privacy 

of beneficiary health records and providing 

beneficiaries with access to their records? 

■ What measures ensure that beneficiaries 

receive full and timely information about 

their care options?

■ What specific network adequacy 

requirements are being applied, including 

for LTSS and behavioral care services? 

How is the state ensuring that those 

requirements are met by plans seeking 

state contracts? 

■ What systems does the state have in place 

for oversight and monitoring to ensure 

continuous quality improvement? 

■ Under what circumstances will substandard 

plan performance trigger loss of quality 

“contract withholds,” suspension or 

termination of passive enrollment, 

or stronger state responses (such as 

terminating the plan’s participation in the 

demonstration)? 

■ Have the state and CMS ensured that all 

services otherwise covered by Medicare 

and Medicaid are covered by the plan? 

■ How does the state ensure that past poor 

performers do not serve as capitated plans? 

How does the state ensure that capitated 

plans have a track record of positive service 

to people with disabilities, including the 

provision of high-quality LTSS in home- and 

community-based settings?

■ What passive enrollment policies are being 

applied? How are plan readiness and quality 

of care tested and assured before passive 

enrollment begins? How are operational and 

beneficiary access issues monitored? How 

are beneficiary opt-out rights secured?

■ What procedures (including beneficiary 

notice) are in place for nonpassive 

enrollment and for voluntary disenrollment? 

For ensuring that beneficiaries can make 

decisions about disenrollment free from 

undue influence? For tracking and reporting 

plan disenrollment rates? 

■ What incentives encourage plans to provide 

LTSS in home- and community-based 

settings? 

CFC Option

If the state is implementing CFC coverage:

■ How does CFC interact with the state’s 

other HCBS systems of care? 

■ How does the state ensure that the plan of 

services and supports is person-centered 

and that the furnishing of services is 

controlled, to the maximum extent possible, 

by the individual beneficiary? 

18 National Council on Disability
■ Which individuals qualify? 

■ What services are covered? What models of 

care delivery are used? 

■ How do individuals appoint representatives? 

What safeguards apply? 

■ In what settings will services be provided? 

How is the state meeting the statutory 

requirement that services must be furnished 

in the most integrated setting appropriate to 

the individual’s needs? 

■ How is input from the disability community 

incorporated into the development and 

implementation of the state’s CFC initiative? 

How is the community represented on the 

CFC’s Development and Implementation 

Council? What other steps has the state 

taken to assure ongoing input?

■ What quality assurance system has 

the state established? What system 

of appeals is used for individual plans? 

How is feedback from consumers, 

their representatives, their families, 

and disability-rights organizations 

obtained? How is the health and wellbeing of beneficiaries monitored? 

What process is used for mandatory 

reporting, investigation, and resolution 

of allegations of neglect, abuse, or 

exploitation? How is quality assurance 

information made public? 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 19
20 National Council on Disability
Chapter 2. Recurring Decision

Federal Decisions

Each year, CMS publishes new rules 

governing (1) the individual market and 

(2) demonstration projects that integrate 

Medicare and Medicaid services for dual 

eligibles. 

Rules for Individual Market Plans 

(Including QHPs)

HHS regulations require the Federal Government 

to publish, each year, a Notice of Benefit and 

Payment Parameters (NBPP) that sets out 

ground rules for the coming year’s Premium 

Stabilization Programs—programs that make 

payments to and from individual health plans to 

prevent instability and to share risk throughout 

each state’s individual market.45 Thus far, the 

annual publication of NBPPs has provided a 

vehicle for CMS to make additional decisions 

as well, revising policies affecting the individual 

market, including QHPs. The NBPP for 2016, 

for example, promulgated regulatory changes 

to EHBs (including the above-described federal 

definition of habilitative services), rules for 

consumer assistance programs, an exceptions 

process for prescription drugs not covered on 

formularies, new standards for Marketplaces 

to provide information about QHPs, and many 

other requirements governing the individual 

and small-group markets.46 These NBPPs are 

published, first as proposed, and then as final 

regulations, subject to standard regulatory notice 

and comment procedures. 

CMS also updates annually the rules and 

procedures that apply to the FFM, which serves 

the residents of 37 states, as of June 2015.47

These policies are embodied in both the NBPP 

and a letter to health insurance issuers that 

sets the terms on which the FFM will oversee 

coverage during the specified year. Such “issuer 

letters” are published in draft and then final 

form, providing an opportunity for public input, 

even though they do not involve regulations that 

trigger formal notice and comment procedures. 

Illustrating the range of topics they cover, such 

letter for 2016 explains how CMS will monitor 

QHP compliance with anti-discrimination 

requirements:

■ The agency will “continue to assess 

compliance through issuer monitoring and 

compliance reviews, including analysis of 

appeals and complaints.”

■ While reviewing QHP certification, “CMS 

will perform an outlier analysis on QHP 

cost sharing (e.g., co-payments and coinsurance)” to “compare benefit packages 

with comparable cost-sharing structures to 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 21
identify cost-sharing outliers with respect to 

specific benefits.”

■ CMS will analyze QHPs’ “Plans and Benefits 

Template,” looking for “discriminatory 

features or wording.” Such features typically 

raise cost-sharing or otherwise reduce 

benefit generosity with some but not all 

enrollees for “reasons not clearly based on 

common medical management practices.”

■ In addition, “CMS is considering conducting 

a review of each QHP to identify 

outliers based upon estimated out-ofpocket costs associated with standard 

treatment protocols for specific medical 

conditions using nationally-recognized 

clinical guidelines. The conditions under 

consideration include: bipolar disorder, 

diabetes, HIV, rheumatoid arthritis, and 

schizophrenia.”48

Financial Integration Demonstrations 

for Dual Eligibles

CMS releases several annual policy and 

operational documents that affect financial 

integration demonstrations that use capitated, 

Medicare-Medicaid plans (MMPs): 

■ Annual MMP contract requirements. They 

include requirements for MMPs to furnish 

information about provider networks 

(including for LTSS), models of care, 

prescription drug formularies, medication 

therapy management programs, and an 

integrated package of covered Medicare, 

Medicaid, and other benefits. In the February 

2015 version of this annual document, CMS 

also provided guidance on other MMP 

issues, including the circumstances under 

which prior performance problems either (1) 

completely bar a plan from participation or 

(2) disqualify a plan from receiving so-called 

“passive enrollees.”49

■ Medicare annual guidance concerning the 

Medication Therapy Management Program 

under Medicare Part D. This guidance 

applies to MMPs.50

■ Medicare’s annual “call letter” for Medicare 

Advantage and Part D plans.51 A separate 

CMS analysis explains how the call letter 

applies to MMPs.52

■ Annually updated reporting requirements for 

MMPs.53

State Decisions

This section discusses recurring state decisions 

in several areas: individual health insurance, 

including QHPs; LTSS; and state budget 

legislation. 

Individual Health Insurance Plans

Like the Federal Government, states periodically 

update the rules that apply in the individual market:

■ A state that uses its own approach to risk 

adjustment, rather than the federal formula, 

must publish annual NBPPs that update riskadjustment rules.54

■ Many state insurance departments release 

annual issuer letters that update standards 

for the individual market as a whole, 

including QHPs.

■ Some SBMs release annually updated 

requirements and procedures for QHP 

certification.

22 National Council on Disability
■ For a plan to be offered in the Marketplace 

in the coming year, it must first be approved 

both by (a) the state insurance regulator, 

which oversees the individual market as 

a whole; and (b) the Marketplace, which 

recertifies QHPs each year as authorized to 

participate in the Marketplace. 

LTSS

Demonstration projects that use capitated 

arrangements to integrate Medicare and 

Medicaid coverage for dual eligibles feature threeway contracts among CMS, the state Medicaid 

program, and each participating health plan. 

Such contracts are renewed annually unless one 

of the parties provides a notice of nonrenewal. 

They have specified end dates, after which new 

contracts must be negotiated. For example, the 

contracts in California and South Carolina end 

after December 2017.55 State-administered FFS 

demonstration projects proceed on the basis of 

MOUs between CMS and the state, which last 

for approximately three years.56

State Budget Legislation

Circumstances vary among states, but state 

budget deliberations often comprise the context 

in which Medicaid policy is revised. Decisions 

made during legislative budget debates can 

affect Medicaid buy-in programs, Medicaid 

LTSS coverage, and other Medicaid eligibility 

and service categories that serve people with 

disabilities. Depending on the state, budgets 

cover annual or two-year periods. The widestranging state budget debates typically occur 

before the enactment of such annual or biennial 

budgets, although budget discussions often take 

place at other times as well.57

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 23
24 National Council on Disability
Chapter 3. Other Future Decision

Federal Decisions

Several future federal decisions are 

important for people with disabilities and 

their representatives to track:

■ EHB rules must be updated, according to 

ACA § 1302(b)(4)(G)(i), (ii) and § (b)(2)(A).58

Periodically, HHS must provide a report to 

Congress and the public that assesses:

❍ “Whether enrollees are facing any 

difficulty accessing needed services for 

reasons of coverage or cost;”59

❍ Whether EHBs need to be “modified 

or updated to account for changes 

in medical evidence or scientific 

advancement;”60 and

❍ The potential impact of added or 

expanded benefits on costs. The cost 

analysis should explore how, if some 

benefits expand or are added, others 

would need to be reduced to prevent 

EHBs as a whole from exceeding the 

actuarial “scope of benefits provided 

under a typical employer plan.”61

After releasing this report, HHS must update 

EHBs “to address any gaps in access to 

coverage or changes in the evidence base” 

that are identified in the report. 

Such updating must provide public notice 

and comment opportunities.

■ The Federal Government can decide, 

at any time, to assume enforcement 

responsibilities in a particular state’s 

individual or small-group market. CMS 

assumes this role if either (1) a state informs 

CMS that it will not be enforcing federal 

laws or (2) CMS determines that a state 

“is failing to substantially enforce these 

requirements.”62 As of January 1, 2014, 

five states (Alabama, Missouri, Oklahoma, 

Texas, and Wyoming) had provided the 

former notice, triggering CMS assumption 

of enforcement duties.63

■ ACA Section 4203 required the Architectural 

and Transportation Barriers Compliance 

Board (Access Board) to promulgate 

standards regarding accessibility of 

medical diagnostic equipment. In 2012, 

the Access Board released proposed 

standards, which were voluntary in nature.64

However, the standards authorize the 

U.S. Department of Justice and the Food 

and Drug Administration (FDA) to take 

future action that would have the effect 

of making the standards mandatory. Over 

time, it will be important to track how these 

voluntary standards are implemented; 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 25
and, if the current voluntary approach 

proves insufficient, whether the Justice 

Department or FDA takes further action. 

■ Several states have expressed a willingness 

to expand Medicaid only if CMS agrees 

to grant waivers, under Social Security 

Act §1115, permitting the states to modify 

the terms on which consumers receive 

coverage. Such waivers granted to date 

have authorized the increased use of private 

health plans, new premium and out-ofpocket cost-sharing charges, incentives 

for beneficiaries to participate in wellness 

promotion, health savings accounts, and 

other measures.65 It will be important for 

the disability community to track the terms 

on which CMS is willing to approve such 

waiver proposals, to ensure that safeguards 

important to people with disabilities remain 

in place. 

State Decisions

One additional set of future state decisions, 

beyond those identified above, involves renewal 

of Medicaid 1115 waivers. Such waivers are 

granted for finite periods, typically three or 

fewer years. Waiver renewals often become 

the subject of negotiation between federal and 

state officials. This can provide an opportunity for 

disability rights groups and other stakeholders 

to share their perspectives with both state 

policymakers and CMS. Such opportunities 

include but also go beyond building formal public 

comment procedures. The disability community’s 

involvement could seek to remedy problems or 

secure additional improvements for people with 

disabilities by modifying an existing waiver’s 

terms and conditions.

Future federal decisions important 

to people with disabilities:

■ Essential health benefits rules must be 

updated to address any gaps in access to 

coverage or changes in the evidence base

■ Federal Government enforcement of 

federal laws in states in which decline 

enforcement or in which CMS determines 

a failure to enforce

■ DOJ or FDA future action to make 

mandatory existing voluntary standards 

regarding accessibility of medical 

diagnostic equipment

■ Terms on which CMS is willing to grant 

states Medicaid expansion waivers to 

modify the terms on which consumers 

receive coverage

26 National Council on Disability
Conclusion

ACA’s implications for people with 

disabilities are considerable and wideranging. During the coming months and 

years, some key implementation decisions that 

could affect people with disabilities are federal, 

but many more choices will be made at the state 

level. To ensure that policy decisions take the 

needs of people with disabilities into account, it 

will be important for the disability community to 

actively monitor discussions around the issues 

identified here and, before key policy choices are 

made, to educate federal and state officials about 

the potential impact of those choices on people 

with disabilities. 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 27
28 National Council on Disability
Analytic Supplement

With many issues identified in the 

body of this report, even the casually 

informed reader can discern options 

that would best meet the needs of people with 

disabilities. Other policy questions are not so 

clear-cut, however. The latter questions are the 

focus of this analytic supplement. 

The main audience for this report is the disability 

rights community, which is skilled in making its 

voice heard at the federal and state levels and 

well informed about longstanding challenges 

facing people with disabilities, but may not have 

the luxury of closely tracking the broad range of 

ACA implementation issues. In some cases, this 

analytic supplement simply fills in ACA’s policy 

or legal background to provide important context 

for a particular policy choice. In other cases, the 

document explores a range of implementation 

options. On a handful of issues, the analytic 

supplement develops new policy approaches 

to help people with disabilities, approaches that 

reflect this project’s collaboration between the 

Urban Institute’s ACA experts and NCD’s thought 

leaders on issues of disability policy. 

In its basic structure, the supplement follows 

the body of the report. It begins with foundational 

policy choices that shape basic ACA systems. It 

then moves to issues that arise at other stages of 

ACA implementation. All issues are categorized 

in terms of federal and state arenas for policy 

resolution, and some are further grouped into 

three general substantive categories:

■ Health care coverage, access, and 

disparities;

■ Health care issues that affect people with 

disabilities’ employment; and

■ Long-term services and supports (LTSS).

One final point bears emphasis. In deciding 

whether to include an issue from the body of the 

report in this analytic supplement, the issue’s 

importance to people with disabilities was a 

secondary consideration. The main factor was the 

need for further explanation. Some vital federal 

and state policy choices are not mentioned 

here because the earlier discussion was viewed 

as sufficient. Conversely, some second-order 

issues are included, as further analysis could 

significantly increase the reader’s understanding. 

Foundational Decisions

As noted earlier, foundational policy decisions 

establish the basic terms on which a particular 

coverage system operates. Although many of 

these decisions have been made, some could 

be reopened for potential revision, at both the 

federal and state levels. 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 29
Federal Decisions

Several federal decisions described in the 

roadmap warrant further discussion.

First, the Federal Government has not 

implemented ACA’s requirement for provider 

surveys that specifically focus on people 

with disabilities’ access to care. ACA §4302(a) 

created Public Health Service Act §3101 [42 USC 

300k], subsection (a)(1)(D) of which requires the 

U.S. Department of Health and Human Services 

(HHS) to:

survey health care 

providers and establish 

other procedures in order to assess access to 

care and treatment for 

individuals with disabilities and to identify—

(i) locations where individuals with disabilities access primary, acute (including intensive), and long term care; 

(ii) the number of providers with accessible 

facilities and equipment to meet the needs 

of the individuals with disabilities, including 

medical diagnostic equipment that meets 

the minimum technical criteria set forth 

in section 510 of the Rehabilitation Act of 

1973; and 

(iii) the number of employees of health care 

providers trained in disability awareness and 

patient care of individuals with disabilities.66

However, this requirement is contained within 

a section—Public Health Service Act §3101—

that is subject to an important limitation: “data 

may not be collected under this section unless 

funds are directly appropriated for such purpose 

in an appropriations Act.”67 The absence of 

appropriations may have prevented HHS from 

carrying out this provider survey. 

Nevertheless, such a survey could move 

forward for providers who participate in Medicaid 

and CHIP. Without language that limits federal 

duties based on available appropriations, ACA 

§4302(b)(1) requires that “any data collected” 

by Medicaid must “meet . . . the requirements 

of section 3101 of the Public Health Service 

Act;” and that CHIP programs must have “data 

collected and reported 

in accordance with 

section 3101 of the 

Public Health Service 

Act.”68 In a recent report 

to Congress, HHS 

noted that, under ACA 

§4302(b), “Collection 

and reporting of [disparities] data in Medicaid and 

CHIP must adhere to the standards developed 

under section 3101 of the PHS Act.”69 Since PHS 

Act Section 3101 applies to Medicaid and CHIP, 

notwithstanding the absence of appropriations, 

HHS can (and arguably must) move forward with 

a survey of people with disabilities’ access to 

care in Medicaid and CHIP. 

Other than such specific assessments of 

disability-based disparities, important datagathering initiatives are under way that could 

benefit the disability community. A prime example 

is the work being done by the National Quality 

Forum to develop quality measures for HCBS.70

Second, as noted in the body of the report, 

CMS has required state Medicaid programs 

to include information about disability in the 

Transformed Medical Statistical Information 

System (T-MSIS), a comprehensive new 

system for tracking Medicaid coverage. This is 

[T]he Federal Government has not 

implemented ACA’s requirement for 

provider surveys that specifically 

focus on people with disabilities’ 

access to care

30 National Council on Disability
an important, positive step that promises to 

enable many analyses of people with disabilities’ 

enrollment, receipt of services, and access to 

care in Medicaid. 

However, the disability community may 

need to carefully monitor this aspect of T-MSIS 

implementation. ACA has placed tremendous 

administrative burdens on state Medicaid 

agencies. Many Medicaid programs are not yet 

done modernizing “legacy” computer systems 

that have housed eligibility data for decades. 

These other priorities may prevent T-MSIS 

implementation from proceeding quickly and 

smoothly. Aspects of 

T-MSIS that are seen 

as less urgent could be 

left for future years. The 

disability community’s 

active involvement 

could be needed to help 

federal policymakers 

understand the 

importance of including 

information about disability as part of T-MSIS early 

implementation.71 (Because states are phasing in 

their implementation of T-MSIS, this issue could 

be raised at the state level as well.)

Finally, several federal policy questions 

already resolved as described in the body 

of the report could be reopened for further 

discussion:

■ For purposes of determining essential health 

benefits (EHBs), should states be allowed to 

use a definition of “habilitative services and 

devices” that is narrower than the federal 

definition?

■ Should State-based Marketplaces (SBMs) 

be required to meet the accessibility 

requirements for Navigators and certain 

other consumer assistance programs 

that CMS has promulgated for Federallyfacilitated Marketplaces (FFMs)?

■ Should information about each network 

provider’s accessibility to people 

with disabilities be required in public 

directories maintained by qualified health 

plans (QHPs) that offer coverage in a 

Marketplace? Should that information be 

consolidated at Marketplace Web sites, 

so consumers can compare networks 

without visiting 

multiple insurers’ 

Web sites? If 

so, should this 

consolidated 

information describe 

each QHP network 

using comparable 

metrics so enrollees 

can make “apples-toapples” comparisons? 

■ Should federal standards for network 

adequacy include specific requirements for 

insurers to meet people with disabilities’ 

needs for accessible services, specialty 

care, and prescription drugs? 

■ Do people with disabilities receive 

sufficient protection under minimum 

federal standards for financial alignment 

demonstrations that integrate Medicare 

and Medicaid coverage for beneficiaries 

who are dually eligible? Do those standards 

require strengthening? 

These issues are discussed below in connection 

with future federal decisions. 

The disability community’s active 

involvement could be needed 

to help federal policymakers 

understand the importance of 

including information about 

disability as part of T-MSIS early 

implementation

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 31
State and Marketplace Decisions

Health Care Coverage, Access, and 

Disparities

Several state policy issues involving coverage, 

access, and disparities require a discussion that 

goes beyond the body of this report.

Applying FFM approaches to SBMs: 

Marketplace accessibility and 

monitoring health plan discrimination

The roadmap notes several areas where 

federal standards for FFMs exceed minimum 

requirements for SBMs: namely, accessibility 

of Marketplace enrollment systems (including 

consumer assistance 

programs) and 

monitoring methods 

to detect potential 

discrimination by health 

plans. In SBM states, 

the disability community 

could explore the 

possibility of adopting 

FFM approaches. 

In future years, disability advocates could 

monitor other emerging practices where the FFM 

exceeds minimum regulatory requirements. In 

such cases, FFM policies and practices could 

become a spur to SBM progress. As explained 

below, such tracking will involve reviewing draft 

and final versions of FFM issuer plan letters 

and Notice of Benefit and Payment Parameters 

promulgated by the Center for Consumer 

Information and Insurance Oversight (CCIIO), the 

portion of CMS that oversees Marketplaces and 

helps regulate private insurance. 

To be clear, this part of the analytic supplement 

explains opportunities for contrasting federal with 

state policies in ways that may yield gains for 

people with disabilities. It is not meant to suggest 

that federal standards, on these and other issues, 

cannot be improved or that states should not be 

encouraged to go beyond federal approaches in 

ways that benefit people with disabilities. 

Network adequacy

A state can supplement federal standards 

for network adequacy, which, as explained 

in the body of the report, do not include 

specific requirements that address people 

with disabilities’ needs for accessible care and 

for specialty services. A voluntary approach is 

probably unlikely to see most insurers meet 

these needs. If some 

but not all plans furnish 

accessible care with 

broad participation 

by the specialists on 

whom people with 

disabilities rely, the plans 

that do so are likely to 

attract more than their 

share of people with 

disabilities and other chronically ill consumers. 

Insurers may be hesitant to take such steps, 

since premium payments, under ACA, do not 

increase for enrollees with health problems. 

ACA’s risk-adjustment and reinsurance payments 

are structured to pay for costs not covered by 

these “community-rated” premiums. However, 

insurers may worry that such payments will not 

fully finance the increased costs of people with 

disabilities and consumers with chronic illness. 

If so, they could be tempted to avoid offering 

coverage that attracts such high-cost groups.

These adverse incentives could be prevented 

by requiring all individual plans to operate 

provider networks that meet the needs of people 

[A]dverse incentives could be 

prevented by requiring all individual 

plans to operate provider networks 

that meet the needs of people 

with disabilities, thus spreading 

out high-cost enrollees among all 

participating insurers

32 National Council on Disability
with disabilities, thus spreading out high-cost 

enrollees among all participating insurers. Such 

requirements are typically within the jurisdiction 

of state insurance regulators, which oversee all 

individual coverage, including both QHPs and 

plans offered outside the Marketplace. In theory, 

a Marketplace could apply stricter network 

adequacy standards for QHP certification than 

insurance regulators apply to other individual 

plans. In practice, however, SBM officials may 

hesitate to take that step, since it may increase 

QHP premiums, causing some consumers to 

choose plans outside the Marketplace.72 QHP 

enrollment levels are critically important to 

Marketplaces because 

the bulk of their 

administrative funding 

comes from health 

plan assessments that 

reflect the number of 

Marketplace participants. 

Even if network 

adequacy standards that 

address the needs of people with disabilities 

apply throughout the individual and small-group 

markets (including QHPs and SHOP plans), 

policymakers may fear that tighter standards will 

increase premiums. People with disabilities could 

address that fear through the careful design of 

network adequacy rules. Not every Marketplace 

consumer needs the specialty care required 

by people with disabilities. Insurers could be 

directed to establish procedures through which 

enrollees whose medical needs are not met by 

standard plan networks can obtain access to 

non-network care for in-network cost-sharing 

amounts, subject to the same out-of-pocket limits 

and cost-sharing reductions that apply to network 

services. Such a provision is part of California’s 

network adequacy requirements: “Plans shall 

arrange for the provision of specialty services 

from specialists outside the plan’s contracted 

network if unavailable within the network, when 

medically necessary for the enrollee’s condition. 

Enrollee costs for medically necessary referrals 

to non-network providers shall not exceed 

applicable co-payments, co-insurance and 

deductibles.”73

Medicaid Alternative Benefit Plans 

(ABPs)

When a state expands Medicaid eligibility to nonelderly adults with incomes up to 138 percent 

of the federal poverty 

line (FPL), adults who 

newly qualify based on 

income are enrolled in 

a Medicaid ABP, which 

must meet all EHB 

requirements. The state 

can (1) base its ABP on 

a commercial insurance 

plan chosen from a menu of options or (2) align 

the ABP with benefits that other Medicaid adults 

receive. If the state offers different benefits to 

newly eligible adults and to other adults, the 

state must create procedures through which 

“medically frail” adults can qualify for standard 

Medicaid adult benefits. The latter benefits 

typically include LTSS, which may not be within 

the ABP. 

Other publications address ABP issues 

affecting individual people with disabilities, 

including medical frailty procedures as well as the 

potential advantages for people with disabilities 

of an ABP that meets ACA’s EHB requirements.74

However, one additional point is important. 

In some states, officials may not realize that 

In [some] cases, premium 

assistance could promote continuity 

of care by preserving access to the 

same providers who served the 

consumer in the previous coverage 

system

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 33
significant state fiscal gains could result from 

state policies that help people with disabilities. 

Newly eligible, low-income adults receive a very 

high level of federal Medicaid funding—100 

percent of all costs through the end of 2016, 

after which the federal medical assistance 

percentage (FMAP) gradually declines to 90 

percent in 2020 and thereafter. By contrast, the 

FMAP for most other Medicaid categories and 

services—including disability-based coverage that 

preceded ACA—ranges between 50 percent and 

74 percent, depending on the state, averaging 57 

percent nationally.75

Some consumers have the option to qualify 

for Medicaid either as (1) 

a low-income adult or (2) 

someone who receives 

pre-ACA disabilitygrounded coverage. If 

they choose the former, 

the state receives a 

substantially greater 

FMAP. State fiscal 

interests are thus served 

by ABP arrangements that encourage people 

with disabilities to qualify based on income, 

rather than disability.76

Suppose a state’s ABP plan lacks Medicaid 

benefits important to people with disabilities, 

and state procedures make it hard to obtain a 

medical frailty exemption. People with disabilities 

who could be eligible for Medicaid based on 

low income alone may instead seek disability 

determinations to receive full Medicaid benefits 

through pre-ACA pathways. To avoid that fiscally 

counterproductive result, a state could either 

(1) align ABPs with Medicaid benefits (including 

LTSS) offered to other adults or (2) develop 

streamlined procedures that make it easy for 

people with disabilities to qualify for the medical 

frailty exemption. 

Medicaid administrative renewal

ACA changed Medicaid in ways that go beyond 

eligibility expansion. Among those changes 

is a requirement for administrative renewal 

of Medicaid eligibility whenever “reliable 

information”77 demonstrates that a beneficiary 

continues to qualify. The beneficiary is sent 

a notice that (1) describes the basis of the 

decision and (2) explains that the beneficiary 

is legally required to correct any errors. Unless 

the beneficiary makes a correction that 

shows ineligibility, 

Medicaid coverage 

continues, without 

any action required 

from the beneficiary. 

Administrative renewal 

can make an important 

contribution to people 

with disabilities’ receipt 

of necessary care 

because it prevents eligible beneficiaries from 

losing coverage by failing to complete and return 

required forms.78

An income determination made by another 

government agency can provide reliable 

information that triggers administrative renewal 

of Medicaid coverage. CMS has made clear 

that data from the Supplemental Nutrition 

Assistance Program (SNAP), for example, can 

lead to administrative renewal if it shows that a 

Medicaid beneficiary continues to be financially 

eligible. Even before ACA, states as diverse as 

Texas and Washington were using SNAP records 

to automatically renew children’s coverage.79

The case records of other benefit programs that 

The choice of EHB-benchmark plan 

can be essential to defining the 

details of covered benefits. In each

state, available options need to 

be compared to determine which 

package comes closest to meeting 

the needs of people with disabilities

34 National Council on Disability
assist people with disabilities, including types of 

Supplemental Security Income (SSI) that do not 

automatically qualify recipients for Medicaid,80

can likewise lead to administrative renewal 

when beneficiaries are already known to retain 

eligibility.

Beneficiaries with highly stable financial 

circumstances—including many people with 

disabilities—can likewise be administratively 

renewed. For example, Wisconsin’s Medicaid 

program extends administrative renewal to 

members of the following groups:81

■ Medicaid beneficiaries whose eligibility is 

related to their receipt of SSI;

■ Participants in Medicaid waiver programs 

covering home- and community-based LTSS;

■ Enrollees in managed long-term care 

arrangements; and

■ Participants in Medicare Savings Programs.

Within each category, Wisconsin beneficiaries 

must meet additional requirements for 

administrative renewal to take place. For 

example, Medicare Savings Program participants 

must have incomes at or below 120 percent 

FPL and assets no more than 50 percent of 

maximum permitted levels. As explained by the 

Wisconsin Medicaid program, “cases selected 

for administrative renewal are cases that are 

highly unlikely to lose eligibility at renewal 

due to increases in income or assets.” Similar 

examples from other states include New York’s 

administrative renewals for SSI-related cases 

with resources that, when last evaluated, did not 

exceed 85 percent of the applicable limit;82 and 

Louisiana’s administrative renewal for children 

when (1) all household income consists of Social 

Security payments, (2) the children receive LTSS, 

or (3) monthly income does not exceed $500 in a 

family whose eligibility has not changed for three 

years.83

Medicaid premium assistance

A state Medicaid program could give Medicaideligible people with disabilities the option to take 

their Medicaid in the form of (1) Marketplace 

plans and (2) supplemental coverage that 

provides Medicaid benefits and cost-sharing 

protections going beyond what the Marketplace 

plan would otherwise provide. This option could 

help people with disabilities for a variety of 

reasons. In some states and with some people 

with disabilities, provider networks are broader in 

Marketplace plans than in Medicaid. Also, some 

people with disabilities may be transitioning into 

Medicaid from another system of coverage. In 

such cases, premium assistance could promote 

continuity of care by preserving access to the 

same providers who served the consumer in the 

previous coverage system. 

Premium assistance can be offered as an 

option through which, if the beneficiary so 

chooses, standard Medicaid is converted into 

payments for private, individual coverage, without 

any need for the state to obtain a federal waiver. 

Requirements for a state to make this option 

available include (1) cost-effectiveness for the 

state and (2) preserving Medicaid benefits and 

cost-sharing protections for the beneficiary 

by providing “wrap-around” coverage that 

supplements the private plan.84 Some states have 

obtained waivers under Social Security Act §1115 

that change premium assistance from an option 

for beneficiaries into the sole available method 

through which beneficiaries receive coverage. In 

effect, such waivers let states force beneficiaries 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 35
into premium assistance arrangements. CMS 

has made clear that premium assistance waivers 

cannot apply to the medically frail.85 Accordingly, 

states can offer premium assistance only as an 

option for people with disabilities, not as the sole 

form of available Medicaid. 

Using premium assistance to permit people 

with disabilities to enroll in Marketplace coverage 

would likely prove cost-effective for Medicaid 

programs. QHP premiums charged for EHBs are 

based on age and geography, not health status, 

as noted earlier. They thus would not reflect the 

higher health care 

costs that result 

from disability. 

Instead, those 

costs would be 

shared throughout 

the individual 

market, as plans 

with healthier 

members transfer 

resources, through 

risk adjustment, 

to plans with 

less healthy 

members.86

For people with 

disabilities to benefit, this approach would need 

to carefully address the structure of wrap-around 

assistance. Such assistance may be more likely 

to translate into coverage if it is provided by 

the same insurer that furnishes the underlying 

QHP coverage. As CMS explained, having the 

same plan deliver all services and provide all 

cost-sharing protections, including those within 

the Medicaid wrap-around package, “ensures 

that coverage is seamless, that cost sharing 

reductions are effectively delivered, and that 

there is accountability for the payments made.”87

This seamlessness can be facilitated if the same 

carrier sponsors both a QHP and a Medicaidmanaged care plan. As of January 2015, carriers 

in 33 states sponsored plans in both markets.88

One approach to the premium assistance 

option discussed here would make a single 

Medicaid payment to a carrier that offered plans 

in both markets. Consumers would receive EHB 

services from the QHP, and the carrier could 

make additional services available through its 

Medicaid plan. In states where QHP networks 

are broader than Medicaid 

networks because providers 

are paid more for Marketplace 

members than for Medicaid 

patients, this approach would 

give people with disabilities 

access to QHP networks 

for EHBs. At the same 

time, it would avoid having 

the Medicaid agency pay 

commercial rates for additional, 

wrap-around services, thus 

increasing this approach’s 

appeal to states. 

Insurance companies and 

Marketplaces would likely 

resist such a policy because it would raise 

overall risk levels and premiums in the individual 

market. Federal QHP subsidy costs would rise, 

and unsubsidized consumers in the individual 

market—generally those with incomes above 

400 percent FPL—would be charged higher 

premiums. However, current federal regulations 

require QHPs to accept consumers whose 

premiums are paid by “State and Federal 

Government programs.”89 This regulation, on its 

face, requires QHPs to accept Medicaid premium 

Once an EHB-benchmark plan 

and supplementary benchmark 

plans are selected, the state 

may need to adjust the details 

of benchmark coverage to meet 

ACA’s requirements, including 

nondiscrimination, mental health 

parity, and rules governing 

habilitative services and 

prescription drugs. Some states will

probably not take this step, unless 

urged to do so...

36 National Council on Disability
payments. That said, aggressive use of the 

premium payment strategy discussed here could 

potentially prompt CMS to amend this regulation. 

Two final comments are important. First, the 

Medicaid wrap-around discussed here cannot 

accompany QHP subsidies because people who 

qualify for Medicaid are generally ineligible for 

QHP subsidies. Instead, Medicaid would pay 

all QHP premiums while providing wrap-around 

coverage. Arkansas took this approach to its 

premium assistance waiver, for example.90

Second, the approach to risk-spreading 

assumed in the above discussion is consistent 

with how CMS structures waivers that use 

Medicaid funds to purchase QHP coverage. 

Medicaid enrollees in QHPs are included in 

the risk pool that determines the standard 

QHP premium. As explained by the Medicaid 

and CHIP Payment and Access Commission, 

“premiums for exchange plans and other private 

market plans are determined using the rating 

rules that apply to that market, and their prices 

reflect the cost of the entire population—both 

Medicaid and non-Medicaid—in that market.”91

That said, the precise issue discussed here—

namely, the impact on QHP risk pools when, 

without waivers, Medicaid gives beneficiaries 

the option to enroll into QHP coverage—has not 

been addressed, since no state has yet tried this 

precise approach.

EHB choices 

Before analyzing state options for defining 

EHBs, it is important to explain how ACA and 

CMS approach EHBs. As noted in the roadmap, 

EHBs must be covered by all nongrandfathered 

individual insurance, small-group plans, and 

Medicaid ABPs. ACA directs HHS to “ensure that 

the scope of the essential health benefits . . . is 

equal to the scope of benefits provided under a 

typical employer plan.” 

ACA lists 10 EHB service categories—

namely, ambulatory patient services, emergency 

services, hospitalization, maternity and newborn 

services, 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).92 To 

fill out the details of these broad categories, a 

state can choose any of the following benchmark 

plans:93

■ The three largest plans by enrollment in the 

state’s small-group market;

■ The three largest plans by enrollment that 

are offered and generally available to state 

employees;

■ The three largest plans, by enrollment, that 

are offered to all federal employees; and

■ The Health Maintenance Organization 

with the state’s largest enrollment of 

commercial, non-Medicaid members. 

If a state does not select an EHB-benchmark 

plan, the small-group plan with the state’s largest 

enrollment is selected, by default.94 If the EHBbenchmark plan does not cover a particular EHB 

service category, the state picks a different 

benchmark plan from the above list. In a state 

that fails to select supplemental benchmarks, 

federal regulations specify the benchmarks that 

are chosen by default.95

Once the benchmark plan for a particular EHB 

service category is chosen, insurers subject to EHB 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 37
requirements must provide benefits within the 

applicable category that are “substantially equal” to 

the benchmark plan’s benefits, taking into account 

amount, duration, and scope limits.96 Unless a 

state decides otherwise, a health plan can, with 

any EHB category other than prescription drugs, 

provide substitute benefits in place of benchmark 

coverage. Substitute benefits must be certified 

as the actuarial equivalent of benchmark benefits. 

This means that, for a standardized population, 

projected claim costs (without consumers’ costsharing payments) are equivalent.97 Special rules 

apply to habilitative services, as explained in 

the roadmap, and prescription drugs.98 If, after 

December 31, 2011, the state imposes new 

mandates for coverage of services beyond EHBs, 

the state must pay the resulting increase in QHP 

premium costs for all enrollees in both individual 

and small-group markets.99

For people with disabilities, several different 

state-level EHB decisions are critically important:

■ The choice of EHB-benchmark plan can be 

essential to defining the details of covered 

benefits. In each state, available options 

need to be compared to determine which 

package comes closest to meeting the 

needs of people with disabilities. If the EHBbenchmark plan misses an EHB category, 

the selection of a supplemental benchmark 

plan to cover that category of services is 

important, for the same reason. Because 

of the requirement that states pay the QHP 

premium costs that result from new statemandated benefits, the choice of benchmark 

plans is one of the few state-level policy 

choices that is realistically available to 

increase the generosity of coverage in 

markets governed by EHB standards. Before 

consumers undertake an effort to revise 

a state’s benchmark plan, it is important 

to understand that a more generous 

package of benefits, with resulting premium 

increases, could be opposed by small firms 

subject to EHB requirements as well as 

Marketplace officials seeking to increase 

enrollment by limiting QHP costs.

■ Once an EHB-benchmark plan and 

supplementary benchmark plans are 

selected, the state may need to adjust 

the details of benchmark coverage to 

meet ACA’s requirements, including 

nondiscrimination, mental health parity, 

and rules governing habilitative services 

and prescription drugs.100 Some states will 

probably not take this step, unless urged to 

do so, particularly if the choice of benchmark 

plan operates by default. 

■ For any EHB category, the state can forbid 

the substitution of actuarially equivalent 

benefits. Depending on the specific details 

of the applicable benchmark, such a 

prohibition may or may not help people with 

disabilities. In general, actuarial equivalence 

gives consumers additional choices and 

lets plans innovate, incorporating new 

treatments that reflect medical advances. 

On the other hand, if insurers are allowed 

to vary the details of covered benefits, such 

variation can become a method through 

which plans discourage enrollment of highcost populations.101 ACA’s risk-adjustment 

and reinsurance mechanisms reduce plans’ 

incentives to avoid high-cost populations, 

but those mechanisms may not be fully 

effective.102 Plan designs that deter costly 

consumers from enrolling violate ACA’s 

38 National Council on Disability
anti-discrimination rules, but if state policy 

permits differences in covered benefits, 

illegal discrimination may become more 

likely. Moreover, a substituted set of 

benefits that is actuarially equivalent to the 

benchmark plan—generating similar costs 

for a standardized population—may not 

provide the same generosity as benchmark 

coverage when it comes to meeting the 

needs of a nonstandardized population, such 

as people with disabilities.

Employment

Medicaid buy-in programs are a Medicaid option 

that serves workers with disabilities whose 

earnings exceed traditional Medicaid limits. They 

can provide critical support that helps people with 

disabilities progress in the workplace by covering 

LTSS that are needed for employment, as income 

rises about standard Medicaid levels. Such 

programs could be weakened or strengthened by 

ACA, depending on state 

implementation.

ACA created a system 

of federal subsidies for 

certain consumers who 

purchase Marketplace 

coverage. To qualify, 

people must have 

income between 100 

and 400 percent FPL and 

they may not be offered 

minimum essential 

coverage, including that 

provided by Medicare, 

Medicaid, and employer-sponsored insurance that 

ACA classifies as affordable. 

Some state officials have characterized 

these new subsidies as eliminating the need 

for Medicaid to continue providing coverage to 

adults who are financially eligible for subsidies. 

For example, Arkansas and Louisiana eliminated 

buy-in coverage for workers with disabilities.103

Such actions ignore that buy-in programs provide 

LTSS that many people with disabilities need to 

live successfully in the community and work. 

These services and supports go far beyond 

what is offered by the commercial EHBs that 

are available in Marketplace plans, which are 

modeled on employer-sponsored insurance. 

On the other hand, if states maintain buy-in 

programs, Marketplaces, which serve consumers 

of all income levels, could provide an opportunity 

for those programs to reach more people with 

disabilities at higher income levels than the 

traditional Medicaid range. The current IAP 

application form asks whether the applicant has 

a physical, mental, or emotional health condition 

that limits activities like bathing, dressing, or 

daily chores. At a minimum, those who answer 

in the affirmative and 

qualify for QHP subsidies 

could automatically be 

informed about buyin options, Medically 

Needy eligibility, and 

similar Medicaid options. 

In addition, those who 

qualify for Medicaid 

coverage as adults with 

incomes at or below 138 

percent FPL could be 

targeted for outreach in 

connection with medical 

fragility exceptions to alternative benefit limits. 

A Marketplace could do more than provide a 

notice that explains how consumers can apply 

for assistance, however. In other contexts, 

Some state officials have 

characterized these new subsidies 

as eliminating the need for Medicaid 

to continue providing coverage to 

adults who are financially eligible 

for subsidies... Such actions ignore 

that buy-in programs provide LTSS 

that many people with disabilities 

need to live successfully in the 

community and work

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 39
interventions that provide such information have 

sometimes failed to yield significant participation 

gains. Going beyond information to furnish handson assistance has often been required to “move 

the needle” on enrollment.104 In this case, one 

possible approach would have the Marketplace 

generate an automatic notice indicating that, 

unless a consumer whose application indicates 

potential disability opts out (perhaps by calling 

a toll-free number or going to a specified Web 

site), the Marketplace, Medicaid program, or 

community-based group working with one of 

those agencies will reach out to the consumer 

to explore available options for extra assistance 

through Medicaid. Such an opt-out procedure 

would (1) let consumers protect their privacy; 

(2) permit those who dislike Medicaid to remain 

outside the program; while (3) increasing the 

likelihood that consumers who have difficulty 

with basic daily activities and need services that 

go beyond Marketplace coverage learn about, 

apply for, and receive Medicaid assistance with 

additional services. 

An essential adjunct to this policy would 

let beneficiaries demonstrate disability, under 

SSI standards, to state-contracting medical 

examiners. This is already occurring in some 

states with disability-based eligibility categories 

that do not require action by the Social Security 

Administration (SSA). Such alternatives to SSA’s 

disability-determination system can produce 

much faster results, shortening the interim 

period during which Medicaid-eligible people 

with disabilities receive QHP coverage. An 

independent system could also yield more 

accurate disability findings in ways that benefit 

people with disabilities.105

Another policy component would combine the 

above enrollment strategies with the use of ACA 

§1332 to increase the range of buy-in programs. 

This section authorizes “state innovation” 

waivers through which states can rearrange 

ACA’s federally-funded marketplace subsidies 

and requirements for employer contributions. To 

obtain a waiver, a state must show that federal 

budget deficits will not increase, aggregate 

coverage will not decline, and consumers will 

not lose benefits or cost-sharing protections. 

CMS has made clear that such waivers can be 

combined with Medicaid and CHIP waivers under 

Social Security Act §1115. 

State innovation waivers under §1332 

cannot be implemented until 2017. To date, 

CMS has promulgated regulations describing 

the procedural requirements for obtaining 

such waivers, but substantive rules have not 

been proposed. One key topic that the latter 

rules would address involves the standards for 

assessing federal budget neutrality.

Depending on how substantive regulations 

under §1332 are structured, state innovation 

waivers could modify the current prohibition against 

using Medicaid buy-in programs to supplement 

federally-subsidized QHP coverage. Because ACA 

denies tax credits to people who receive minimum 

essential coverage through Medicaid, those who 

qualify for buy-in programs must choose between 

Medicaid and subsidized QHP coverage. However, 

Section 1332 directly authorizes waivers of those 

tax credit restrictions.106

Some policymakers may prefer mainstreaming 

people with disabilities’ receipt of care, improving 

their ability to progress up the economic ladder, 

and retaining their access to QHP provider 

networks. These priorities would be advanced if 

buy-in eligibles could (1) purchase the Medicaid 

LTSS package of services, (2) on a sliding scale 

based on income that (3) supplements coverage 

40 National Council on Disability
of EHBs provided by federally-subsidized QHPs. 

Wrap-around buy-in coverage would remain 

available to supplement employer-sponsored 

insurance, as is currently the case. 

One challenge to this approach involves 

Section 1332’s requirement of federal budget 

neutrality. Some Medicaid savings would 

result from using QHPs, which cannot adjust 

premiums to reflect enrollee risk, as explained 

earlier. The case for federal budget neutrality 

would be strengthened to the extent that 

people with disabilities, given this new coverage 

opportunity, could progress farther and faster up 

the employment ladder. Their increased earnings 

would yield several favorable federal budget 

outcomes: 

■ Higher income-based health insurance 

payments from beneficiaries, which would 

reduce the need for federally-funded 

support, whether provided through Medicaid 

or QHP subsidies; 

■ Increased federal income tax and payroll tax 

revenues; and

■ Reduced use of other federally-funded 

benefits, including SSI and Social Security 

Disability Insurance.

Under this approach, the Federal Government’s 

share of full-scope Medicaid buy-in coverage 

would be replaced by a combination of (1) federal 

QHP subsidies; and (2) federal Medicaid funding 

of supplemental LTSS coverage. Whether these 

federal costs increase or fall, on net, would likely 

vary with the state and enrollee. Two factors 

are likely to prove fundamental to this cost 

calculus: beneficiary income, which determines 

the generosity of federal QHP subsidies; and 

the underlying cost of QHP coverage of EHBs, 

compared to Medicaid coverage of those 

services. 

On the other hand, this approach could 

increase other federal expenses. Placing costly 

consumers into the Marketplace would raise 

premiums in the individual market as a whole, 

which would increase QHP subsidies for other 

Marketplace participants. (Insurance costs 

would also rise for consumers who purchase 

individual coverage without subsidies, as noted 

earlier.107) That said, per capita premium increases 

could be quite modest, since the added risks 

will be spread throughout the entire individual 

market, and competition between insurers holds 

down QHP premiums. One variant to consider 

would combine this approach with reinsurance 

payments that limit (or entirely prevent) increased 

individual market premiums that would otherwise 

result. However, any federal funding for such 

payments would presumably factor into the 

budget neutrality calculation. 

LTSS

Financial alignment demonstrations for 

dual eligibles

The body of the report includes a long list of LTSS 

issues to monitor when a state implements a 

demonstration project that aligns Medicaid and 

Medicare for dual eligibles. If that monitoring 

suggests that people with disabilities are being 

harmed or are not receiving the promised 

benefits of such a demonstration, both federal 

and state policy responses are possible. Those 

responses are described below, in the context of 

future federal and state policy choices. 

Community First Choice

ACA’s “Community First Choice” (CFC) Medicaid 

option for expanded coverage of home- and 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 41
community-based services (HCBS) has received 

considerable analysis elsewhere,108 but one 

issue is important to address here. Unlike 

HCBS provided under pre-ACA waivers, the CFC 

option includes neither caps nor waiting lists. All 

consumers who qualify must receive covered 

services. 

ACA provides an enhanced FMAP for CFC 

coverage. Five states had taken up this option 

by July 2015, despite the absence of caseload 

controls that many state officials see as an 

important to containing costs.109 Like other 

HCBS, the CFC option is 

governed by new federal 

regulations that seek to 

ensure that services are 

provided in true homeand community-based 

settings.110

The absence of enrollment caps or waiting 

lists and the opportunity for enhanced FMAP 

create the possibility that the CFC option could 

replace services furnished under previous 

HCBS waivers. Careful monitoring may be 

required to prevent people with disabilities from 

inadvertently suffering harm. For example, if CFC 

services are provided in community settings 

that are more institutional than those in which 

pre-ACA waiver services were provided, CFC 

implementation could have the unintended effect 

of increasing rather than reducing the institutional 

character of a state’s coverage of HCBS. 

Recurring Annual Decisions

Federal Decisions

As explained in the body of the report, CMS 

publishes annual rules governing (1) the individual 

market and (2) demonstration projects that 

integrate Medicare and Medicaid services 

for dual eligibles. These proceedings provide 

vehicles to address emerging problems that 

may undermine people with disabilities’ receipt 

of essential services. The most promising such 

vehicles, all of which are described above, are 

likely to be

■ Annual Notices of Benefit and Payment 

Parameters (NBPP), which have already 

been used to revise EHBs and other policies 

governing the individual market (including 

QHPs); 

■ Annual letters to health 

insurance issuer that set out 

policies for the FFM; and

■ For dual eligible 

demonstrations, annual 

revisions to “Medicare-Medicaid Plan” 

(MMP) contract requirements and reporting 

requirements. These revisions affect 

capitated, private insurers’ provision of 

Medicare and Medicaid services, including 

LTSS. They do not, however, directly govern 

the small number of states (three, as 

of June 2015) that use other integration 

methods, such as state-organized, fee-forservice systems. 

The disability community’s use of these 

annual, federal venues will depend on the 

issues that emerge nationally over time and the 

resulting evidence that can be put forward to 

show the need for change. However, even at 

this early juncture, several issues appear worth 

considering:

■ It is not clear why, for EHB purposes, states 

should be able to use a narrower definition 

of “habilitative services and devices” than 

Unlike HCBS provided under 

pre-ACA waivers, the CFC option 

includes neither caps nor waiting 

lists

42 National Council on Disability
the definition set out in federal regulations—

namely, “health care services and devices 

that help a person keep, learn, or improve 

skills and functioning for daily living.”111 It is 

likewise unclear why a state should be able, 

by constraining its definition, to let plans (1) 

cover fewer habilitative than rehabilitative 

services and (2) apply a common limit to 

all habilitative and rehabilitative services, 

rather than separate 

limits for each of 

these two service 

categories. The 

health care needs 

that led to the 

federal definition of 

habilitative services 

and devices are not affected by the state in 

which a person with disabilities happens to 

reside. 

In analyzing whether EHBs in all states 

should meet the federal definition, it will 

be important to document how states 

have used their authority to depart from 

this definition. Before CMS promulgated 

regulations defining “habilitative services 

and devices,” several states crafted their 

own definitions that were similar but not 

identical to the definition later selected 

by CMS.112 Other states simply required 

insurers to offer habilitative services in 

parity with rehabilitative services.113 With 

data-gathering ongoing, it remains to be 

seen how states will modify their definitions 

in response to the federal definition 

announced in February 2015.

■ As noted earlier, the FFM is implementing 

accessibility standards for consumer 

assistance programs that go beyond 

the minimum requirements that apply 

to SBMs. If problems emerge in SBMs’ 

approach to consumer assistance, it may 

become important to raise minimum federal 

standards, perhaps incorporating promising 

FFM practices as a starting point.

■ CMS decided, in the NBPP for 2016, not to 

require QHP provider directories to include 

information about 

particular providers’ 

accessibility to people 

with disabilities.114

Without that information, 

it will be difficult if not 

impossible for many 

people with disabilities to 

decide which QHP best meets their needs. 

As observed in the body of the report, 

CMS received a comment that provider 

directory requirements could be interpreted 

in a fashion that is not helpful to people 

with disabilities. Those requirements, 

according to the comment, could be 

viewed as implying that providers can serve 

federally subsidized consumers without 

making services accessible to people with 

disabilities, as required by the Americans 

with Disabilities Act and section 504 of the 

Rehabilitation Act. 

However, nothing prevents CMS from 

accompanying a requirement for provider 

directories with a regulatory preamble 

noting that compliance with directory 

requirements does not relieve a provider 

from accessibility obligations under other 

statutes and regulations. CMS has already 

used similar language to accompany EHB 

[I]t remains to be seen how states 

will modify their definitions in 

response to the federal definition [of 

“habilitative services and devices”] 

announced in February 2015

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 43
regulations forbidding discriminatory 

health plan designs.115 Moreover, provider 

directories could be required to include 

information about where each provider 

falls on a spectrum of accessibility 

levels, each of which meets applicable 

requirements under the ADA and Section 

504. Such a standard would not implicitly 

endorse provider accessibility below listed 

levels. 

■ In a similar vein, regulations promulgated 

in February 2015 do not make special 

provisions for 

reporting about 

prescription 

drug formularies’ 

covered drugs 

and cost-sharing 

tiers; instead, CMS 

relied on general 

requirements 

for providing 

information 

about health 

plan coverage.116 If experience shows that 

such general requirements leave too much 

“wiggle room” for underreporting formulary 

information, disability-rights advocates could 

urge CMS to promulgate more specific rules 

that govern formularies. 

■ Federal network adequacy standards 

include no requirements that are 

specifically directed to people with 

disabilities’ need for accessible services 

and specialty care, as noted earlier. CMS 

has indicated that, once the National 

Association of Insurance Commissioners 

(NAIC) releases a forthcoming revision of 

the NAIC model law on network adequacy, 

CMS would reexamine its regulations 

on this subject. Now that the NAIC has 

released its model law,117 the NBPP could 

be used to add safeguards for people 

with disabilities, along the lines discussed 

above in connection with states’ network 

adequacy standards.

■ Monitoring of beneficiary experiences with 

Medicare/Medicaid financial alignment 

demonstrations could indicate a need 

to tighten federal safeguards. Already, 

beneficiary focus groups 

and presentations from 

consumer assistance 

programs suggest that, 

in some cases, efforts to 

educate consumers may 

be falling far short of their 

goals, with beneficiaries 

experiencing significant 

confusion and sometimes 

being unable to obtain 

care despite repeated 

attempts;118 some managed care plans 

are frequently unable to reach enrollees 

to conduct assessments and develop care 

plans; and overall enrollment levels in 

some states appear to be falling short of 

projections.119 Demonstration evaluations 

should be carefully tracked, as they could 

provide other useful information about 

these initiatives’ effects on beneficiaries. 

In addition to a national evaluation 

commissioned by CMS, individual states 

are obtaining separate evaluations. Some 

results of state-commissioned evaluations 

are likely to become available before the 

national evaluation is released.120

CMS decided .. not to requi

QHP provider directories to include 

information about particular 

providers’ accessibility to people 

with disabilities. Without that

information, it will be difficult if not 

impossible for many people with 

disabilities to decide which QHP 

best meets their needs

44 National Council on Disability
State Decisions

Two recurring procedures mentioned in the body 

of the report could be important to consider, 

depending on emerging 

problems experienced by 

people with disabilities 

in the individual market 

or financial alignment 

demonstrations.

First, in most states 

insurers need the 

Department of Insurance 

to approve annual plan 

designs, and QHPs 

must be certified by the Marketplace each year 

in order to participate. States vary enormously in 

the scrutiny they apply to health plan offerings. 

Regardless of the state’s general practice, if a 

particular insurer has been problematic in its 

approach to people with disabilities, annual 

proceedings before an insurance regulator and/or 

Marketplace may furnish a useful opportunity to 

raise concerns about the insurer’s performance. 

Even if such interventions do not result in an 

insurer losing the right to offer coverage, they can 

lead to tighter state requirements or monitoring 

that improve the insurer’s future service to 

people with disabilities. 

Second, as explained in the body of the 

report, when private insurers cover Medicare 

and Medicaid services under financial alignment 

demonstrations, three-way contracts among 

CMS, the state, and the MMP set the terms on 

which services are provided. These contracts are 

passively renewed each year, unless one of the 

parties raises concerns. Such annual renewals 

may present an opportunity for people with 

disabilities and their representatives to raise 

concerns about any emerging problems. They 

could also be used to suggest steps to ensure 

that beneficiaries realize promised gains from 

service integration, including care coordination, 

coverage of additional 

benefits, and additional 

cost-sharing protections. 

Such issues can be 

raised with the plan, the 

state, federal officials, 

or some combination 

of the three. A positive 

outcome from such 

efforts can involve 

changing the conditions 

of the contract to benefit people with disabilities 

or, with particularly serious problems of plan 

performance, contract termination. 

Note: As a related, ongoing strategy, people 

with disabilities and their advocates can join 

advisory groups or implementation councils 

for Financial Alignment demonstrations. Such 

participation can offer both information about 

and opportunities to influence these evolving 

mechanisms for integrated financing and service 

delivery.121

Other Future Federal Decisions

Several other future federal decisions noted in 

the body of the report would benefit from further 

analysis. 

EHB Updates

Federal EHB rules are slated for periodic future 

updating. No fixed, statutory schedule governs 

the updates, which must take into account 

whether “enrollees are facing any difficulty 

accessing needed services for reasons of 

coverage or cost” and “changes in medical 

evidence or scientific advancement.”122

[I]f a particular insurer has been 

problematic in its approach to 

people with disabilities, annual 

proceedings before an insurance 

regulator and/or Marketplace may 

furnish a useful opportunity to 

raise concerns about the insurer’s 

performance

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 45
ACA proscribes a two-step process for 

updating benefits: publication of an HHS report, 

followed by EHB changes that reflect the report’s 

findings. Notice and comment procedures provide 

an important, though sub-optimal, forum in which 

to share the experiences of people with disabilities 

with federal policymakers. To have greater impact 

in shaping federal EHB changes, it may be 

important to communicate the experiences of 

people with disabilities on an ongoing basis, well 

before HHS issues its EHB report. 

It is not obvious precisely how HHS will 

implement the statutory requirement for 

updating EHBs. ACA appears to contemplate 

the promulgation and revision of detailed federal 

standards that specify the amount, duration, 

and scope of services within each of 10 EHB 

categories. However, CMS has eschewed such a 

role, instead deferring to state choices of EHBbenchmark plans, as explained earlier.

When it first described how EHBs would be 

defined by letting states choose from among 

benchmark plans, CMS explained that it intended 

“to propose a process to evaluate the benchmark 

approach.”123 No process has yet been announced, 

but this comment flags one possible change to 

EHBs—namely, increasing the federal role in 

specifying benefit details. At least in theory, this 

could involve a wholesale abandonment of the 

benchmark plan approach, instead shifting to a 

federally-specified set of amount, duration, and 

scope rules for each EHB category. 

Such a significant change of approach could 

meet with resistance from policymakers who 

wish to avoid the reality or appearance of a 

very strong federal role in specifying the details 

of covered benefits throughout the country’s 

diverse individual and small-group markets. 

However, once the above-described option for 

§1332 waivers becomes available in 2017, a state 

could obtain such a waiver to depart from any 

newly detailed federal EHB standards. This ability 

of states to escape federal requirements could 

lessen, to some degree, concerns about a federal 

role some may see as overly intrusive.

Alternatively, if people with disabilities 

experience emerging problems with particular 

benefits—for example, durable medical 

equipment, which is included within the broader 

EHB category of “rehabilitative and habilitative 

services and devices”—HHS could create, 

for those particular benefits, minimum federal 

standards that go beyond benchmark coverage. 

Current regulations have already taken that step 

with habilitative services and prescription drugs, 

so there is a precedent to take similar future 

steps if needed to address new problems. 

The disability community could also seek 

to change the menu of benchmark options. An 

option that has been problematic in the coverage 

it offers to people with disabilities could be 

removed from the approved list. CMS could also 

make new benchmark options available to states. 

A precedent for the latter is provided by current 

regulations that go beyond commercial coverage 

to give states the option to use CHIP benefits as 

the benchmark for EHB that involves children’s 

dental and vision care.124,125

Another issue that could warrant 

reexamination is the option for plans to 

provide substitute benefits, based on actuarial 

equivalence. It is hard to envision CMS entirely 

abandoning such actuarial equivalence. CMS’s 

first EHB bulletin explained, “Permitting flexibility 

would provide greater choice to consumers, 

promoting plan innovation through coverage 

and design options, while ensuring that plans 

providing EHBs offer a certain level of benefits.”126

46 National Council on Disability
On the other hand, that same bulletin showed 

that CMS understood the potential need to limit 

substitution: 

The Affordable Care Act also directs the 

Secretary to consider balance in defining 

benefits and to ensure that health insurance 

issuers do not discriminate against enrollees or applicants with health conditions. 

Providing guidelines for substitution will 

ensure that health insurance issuers meet 

these standards.127

If the current regulatory approach to substitute 

benefits results in problems for people with 

disabilities, targeted limitations on particular, 

problematic kinds of substitution and actuarial 

equivalence is likely to prove more acceptable 

to CMS than a wholesale repeal of all benefit 

substitution options. 

Federal Enforcement

States are generally responsible for enforcing 

ACA’s requirements that govern the private 

market, including QHPs. However, as explained in 

the body of the report, the Federal Government 

assumes enforcement responsibility if either (1) 

a state provides notice that it is not enforcing 

federal laws or (2) CMS determines that a state 

is failing to substantially enforce applicable 

requirements.

In a number of states, the disability 

community may view state insurance regulators 

and Marketplaces as unduly sympathetic to the 

insurance industry. Some may thus advocate for 

CMS to assume enforcement responsibilities. 

However, many observers also view CCIIO as 

highly receptive to insurance industry concerns; 

and the past history of federal enforcement 

of private health insurance laws does not 

provide grounds for optimism, given capacity 

constraints facing federal agencies. When state 

enforcement gaps appear, the Department of 

Labor is responsible for enforcing insurance 

market safeguards, under several pre-ACA federal 

statutes, and very little federal enforcement 

activity has taken place. Experience overseeing 

the private insurance industry is substantially 

deeper at the state than the federal level, and 

federal health agencies are not staffed to take on 

labor-intensive enforcement duties overseeing 

the individual market. 

Conclusion

Federal and state policymakers implementing 

ACA face a broad range of disparate choices that 

could have a significant impact on people with 

disabilities. A well-informed disability community 

has the potential to influence those decisions. 

Given the large number of choices in play, it will 

be important for people with disabilities and 

their representatives to make careful judgments 

about prioritization. By combining wise choices 

about issue focus, solid evidence of effects on 

people with disabilities, and policy remedies 

that are carefully crafted to take into account 

the full range of policymakers’ likely concerns, 

the disability community can help people with 

disabilities avoid the major risks posed by ACA 

while achieving many of the gains promised by 

this landmark legislation.

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 47
48 National Council on Disability
1 42 USC 300k(a)(1)(A), enacted in ACA §4302(a).

2 42 USC 300k(a)(1).

3 42 USC 300k(b), (c).

4 42 USC 300k(h).

5 42 USC 300k(a)(2)(D).

6 See 42 USC §§ 1396a(a)(76) [Social Security Act §1902a], 1397hh(e)(7) [Social Security Act §2108], 1396w-5 

[Social Security Act §1946], enacted by ACA §4302(b). 

7 Covered surveys collect data from self-reports or respondents who serve as household representatives. 

8 U.S. Department of Health and Human Services (HHS), Oct. 2011, “Implementation Guidance On Data Collection Standards For Race, Ethnicity, Sex, Primary Language, And Disability Status,” http://aspe.hhs.gov/datacncl/

standards/ACA/4302/index.shtml, cited in Rashida Dorsey and Garth Graham, “New HHS Data Standards for 

Race, Ethnicity, Sex, Primary Language, and Disability Status,” JAMA December 7, 2011, 306 (21): 2378-79. See 

also Virginia S. Cain, National Center for Health Statistics, “HHS Data Standards for Race, Ethnicity, Sex, Primary Language and Disability Status,” http://www.cdc.gov/nchs/data/bsc/CAIN_Data_standards.pdf (undated). 

9 HHS, Nov. 2014, “Report to Congress Improving the Identification of Health Care Disparities in Medicaid 

and CHIP,” http://www.medicaid.gov/medicaid-chip-program-information/by-topics/quality-of-care/downloads/4302b-rtc-2014.pdf. For the T-MSIS data elements corresponding to the questions about disability in the 

text, see Center for Medicare and Medicaid Services (CMCS), Nov. 2013, “T-MSIS Data Dictionary Appendices, 

Version Nov13v1.1,” http://www.medicaid.gov/medicaid-chip-program-information/by-topics/data-and-systems/

downloads/t-msis-data-dictionary.zip. For more information about T-MSIS, see CMS, Aug. 23, 2013, “Transformed Medicaid Statistical Information System (T-MSIS) Data,” SMD 13-004, http://www.medicaid.gov/Federal-Policy-Guidance/Downloads/SMD-13-004.pdf. 

10 National Quality Forum is conducting a project to develop a conceptual framework and perform an environmental scan to address gaps in performance measures for HCBS. This project seeks to enhance the quality of community living. 

11 The most recent versions include AHRQ, March 2014, “Health Care Coverage Analyses of the National Healthcare Quality and Disparities Reports: 2000-2008 Trends,” http://www.medicaid.gov/medicaid-chip-program-information/by-topics/quality-of-care/downloads/health-coverage-analyses-of-nhqr-2000-2008-trends.pdf; and AHRQ, 

May 2014, “National Healthcare Disparities Report, 2013.” http://www.ahrq.gov/research/findings/nhqrdr/

nhdr13/index.html.

12 AHRQ, 2013 National Healthcare Disparities Report, “Priority Populations Appendix,” October 2014 www.ahrq.

gov/research/findings/nhqrdr/nhqrdr13/prioritypopsapp.html The report discusses functional limitations in the 

context of patients receiving home health care, nursing home services and inpatient care. “Chapter 3 Effectiveness of Care Across the Lifespan,” www.ahrq.gov/research/findings/nhqrdr/nhqr13/chap3a.html#fig316.

13 45 CFR §§ 155.205(c)(1), (c), (d) (e), 155.230(b).

14 45 CFR 156.250.

15 This count includes so-called “partnership” Marketplaces and “federally supported” Marketplaces, both of 

which are governed by FFM rules. Kaiser Family Foundation, 2015, “State Health Insurance Marketplace Types, 

2015,” State Health Facts, http://kff.org/health-reform/state-indicator/state-health-insurance-marketplace-types/. 

Information as of June 2015.

16 45 CFR 155.215(d).

Endnotes

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 49
17 Ibid.

18 45 CFR 155.225(d)(5). 

19 On December 2, 2015, CMS published proposed regulations modifying consumer information and network adequacy standards. This roadmap does not address that draft rule. See HHS, “Patient Protection and Affordable 

Care Act; HHS Notice of Benefit and Payment Parameters for 2017; Proposed Rule,” 80 Federal Register 75488 

(December 2, 2015), http://www.gpo.gov/fdsys/pkg/FR-2015-12-02/pdf/2015-29884.pdf.

20 45 CFR 156.230(a)(2). 

21 HHS, Feb. 27, 2015, “Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2016; Final Rule,” 80 FR 10750, 10833.

22 Draft Standards are available online at http://www.Access-Board.gov. Final standards have not been released as 

of October 2015. 

23 On its face, this provision appears to cover Marketplaces; QHPs that receive tax credits or subsidies; insurers 

that enter into contracts that provide federal funding through Medicaid, Medicare, CHIP, or the Federal Employee Health Benefit Program; and perhaps health care providers who receive payments from such QHPs or 

contracting insurers. Depending on how the statute is interpreted in the coming years, this prohibition may also 

apply to state agencies, including insurance regulators. 

24 Notwithstanding that prohibition, 42 CFR 156.125(e) protects an insurer’s ability to “appropriately utilize[e] reasonable medical management techniques.”

25 On September 8, 2015, HHS issued proposed regulations interpreting Section 1557. This roadmap does not 

address that draft rule. See HHS, “Nondiscrimination in Health Programs and Activities; Proposed Rule,” 

80 Federal Register 54172 (September 8, 2015), http://www.gpo.gov/fdsys/pkg/FR-2015-09-08/pdf/2015-

22043.pdf. 

26 OCR (undated). “Section 1557 of the Patient Protection and Affordable Care Act,” http://www.hhs.gov/ocr/

civilrights/understanding/section1557/.

27 Request for Information Regarding Nondiscrimination in Certain Health Programs or Activities published in 

the Federal Register on August 1, 2013; https://www.federalregister.gov/articles/2013/08/01/2013-18707/request-for-informationregarding-nondiscrimination-in-certain-health-programs-or-activities. This request for information specifically asked for information about experiences with, and examples of, disability-based discrimination in health programs and activities. 

28 HHS, Sept. 8, 2015, Nondiscrimination in Health Programs and Activities; Proposed Rule, 80 FR 54172-54220, 

http://www.gpo.gov/fdsys/pkg/FR-2015-09-08/pdf/2015-22043.pdf.

29 HHS, Notice of Benefit and Payment Parameters for 2016, at 10822.

30 45 CFR 147.150(a). EHB requirements do not govern “grandfathered” plans that have not changed their terms 

substantially since before the application of ACA’s insurance market reforms. 

31 ACA Section 1302(b)(1)(G).

32 HHS, Notice of Benefit and Payment Parameters for 2016, at 10811. See 45 CFR 156.110(f).

33 45 CFR 156.115(a)(5)(i), added by HHS, Notice of Benefit and Payment Parameters for 2016.

34 45 CFR 156.115(a)(5)(ii) and (iii).

35 HHS, Notice of Benefit and Payment Parameters for 2016, at 10811.

36 One area that may warrant additional analysis involves ACA §2402(a), which directs HHS to issue regulations 

that remove various barriers to the receipt of HCBS. 

37 CMS, July 8, 2011, “Financial Models to Support State Efforts to Integrate Care for Medicare-Medicaid Enrollees,” SMDL 11-008, ACA 18, http://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-MedicaidCoordination/Medicare-Medicaid-Coordination-Office/Downloads/Financial_Models_Supporting_Integrated_

Care_SMD.pdf. 

38 CMS, July 8, 2011, “Financial Models to Support State Efforts to Integrate Care for Medicare-Medicaid 

Enrollees,” SMDL 11-008, ACA 18, http://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-andMedicaid-Coordination/Medicare-Medicaid-Coordination-Office/Downloads/Financial_Models_Supporting_

Integrated_Care_SMD.pdf. 

50 National Council on Disability
CMS, Oct. 2011, “Financial Models to Support State Efforts to Integrate Care for Medicare-Medicaid Enrollees: 

Standards and Conditions,” http://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/FinancialAlignmentInitiative/Downloads/FADemonstrationsStandardsandConditionswithCoverPage.pdf. 

39 CMS, Page last Modified: 02/25/2015, “Approved Demonstrations - Signed MOUs,” http://www.cms.gov/

Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/

FinancialAlignmentInitiative/ApprovedDemonstrationsSignedMOUs.html. 

40 https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/MedicareMedicaid-Coordination-Office/FinancialAlignmentInitiative/FundingtoSupportOmbudsmanPrograms.html.

41 CCIIO, undated, “Information on Essential Health Benefits (EHB) Benchmark Plans,” https://www.cms.gov/

cciio/resources/data-resources/ehb.html. 

42 Unless prohibited by a state, health plans can substitute actuarially equivalent services, within an EHB category, for the coverage offered by the state’s benchmark plan. This substitution is prohibited, however, for 

EHB prescription drugs, to which other regulatory standards apply. 45 CFR §156.115(b). For prescription drug 

standards, see the amended provisions of 45 CFR 156.122 contained in HHS, Notice of Benefit and Payment 

Parameters for 2016, at 10871.

43 In most states, these standards are promulgated by the Department of Insurance (or another insurance regulatory agency) and apply to all plans sold in the individual or “nongroup” market, including QHPs. In some states, 

Marketplaces supplement these standards and apply additional certification requirements to QHPs.

44 CMS, July 15, 2013, “Medicaid and Children’s Health Insurance Programs: Essential Health Benefits in Alternative Benefit Plans, Eligibility Notices, Fair Hearing and Appeal Processes, and Premiums and Cost Sharing; 

Exchanges: Eligibility and Enrollment; Final Rule.” 78 Federal Register 42160, 42191.

45 See, e.g., 45 CFR 153.320(a).

46 HHS, Notice of Benefit and Payment Parameters for 2016. 

47 As noted earlier, this count includes all states with Markeptlaces that are subject to FFM rules; such states use 

the federal healthcare.gov platform to offer QHPs. 

48 See, e.g., CCIIO, Feb. 20, 2015, “FINAL 2016 Letter to Issuers in the Federally-facilitated Marketplaces,” http://

www.cms.gov/CCIIO/Resources/Regulations-and-Guidance/Downloads/2016-Letter-to-Issuers-2-20-2015-R.pdf. 

49 CMS, Feb. 23, 2015, “Medicare-Medicaid Plan Annual Requirements and Timeline for CY 2016,” http://www.

cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/FinancialAlignmentInitiative/Downloads/2016MMPAnnualRequirements.pdf. 

50 CMS, April 7, 2015, “Medication Therapy Management Program Guidance and Submission Instructions,” http://

www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-MedicaidCoordination-Office/FinancialAlignmentInitiative/Downloads/2016_MTMAnnualRequirements.pdf. 

51 See, e.g., CMS, April 6, 2015, “Announcement of Calendar Year (CY) 2016 Medicare Advantage Capitation Rates 

and Medicare Advantage and Part D Payment Policies and Final Call Letter,” http://www.cms.gov/Medicare/

Health-Plans/MedicareAdvtgSpecRateStats/Downloads/Announcement2016.pdf. 

52 See CMS, April 7, 2015, “Applicability of Final Call Letter Provisions to Medicare-Medicaid Plans,” http://www.

cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/FinancialAlignmentInitiative/Downloads/2016MMPFinalCallLetter040715.pdf. 

53 CMS, March 6, 2015, “Update to Contract Year 2015 Medicare-Medicaid Plan Reporting Requirements,” http://

www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-MedicaidCoordination-Office/FinancialAlignmentInitiative/Downloads/FinalCY2015CoreReportingMemo030615.pdf. 

54 45 CFR 153.100.

55 CMS, “Three Way Contract” for South Carolina, http://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/FinancialAlignmentInitiative/

Downloads/SouthCarolinaContract.pdf; “Three Way Contract” for California, http://www.cms.gov/MedicareMedicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/

FinancialAlignmentInitiative/Downloads/CAContractwithoutSub.pdf. 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 51
56 In Colorado, Minnesota, and Washington, the MOUs cover the periods from, respectively, July 1, 2014 through 

December 31, 2017; September 13, 2013, through December 31, 2016; and April 1, 2013 through December 

31, 2016. CMS, Feb. 28, 2014, “MOU Between CMS And The State of Colorado,” http://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/

FinancialAlignmentInitiative/Downloads/COMOU.pdf; CMS, Sept. 12, 2013, “MOU Between CMS And The 

State of Minnesota,” http://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/FinancialAlignmentInitiative/Downloads/MNMOU.pdf; CMS, Oct. 

24, 2012, “MOU Between CMS And The State of Washington,” http://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/FinancialAlignmentInitiative/Downloads/WAMFFSMOU.pdf. 

57 Many important state budget decisions are made between the enactment of standard annual or biennial budgets—for example, when a previously adopted budget is revised. Special legislative sessions and legislative 

attempts to override gubernatorial vetoes can provide further budget-related opportunities to change state 

Medicaid policy.

58 Public Law -148 – March 23, 2010 www.gpo/fdsys/pkg/PLAW-111publ148.pdf.

59 Ibid., p.768.

60 Ibid.

61 Ibid., p.46.

62 45 CFR 150.203.

63 CCIIO, undated, “Compliance,” http://www.cms.gov/CCIIO/Programs-and-Initiatives/Health-Insurance-Market-Reforms/compliance.html. 

64 Architectural and Transportation Barriers Compliance Board, Feb. 8, 2012, “Proposed Accessibility Standards for 

Medical Diagnostic Equipment,” http://www.access-board.gov/attachments/article/664/nprm.pdf. 

65 For a discussion of waivers proposed and granted to date, see Robin Rudowitz, Samantha Artiga, and MaryBeth Musumeci, Feb. 2015, “The ACA and Medicaid Expansion Waivers,” Washington, DC: Kaiser Commission 

on Medicaid and the Uninsured, http://files.kff.org/attachment/issue-brief-the-aca-and-medicaid-expansionwaivers. 

66 Public Health Service Act §3101(h) [42 USC 300k(h)].

67 Public Health Service Act §3101(h) [42 USC 300k(h)].

68 These provisions are codified in Social Security Act §§ 1902(a)(76) and 2108(e)(7) [42 USC §§1396a(a)(76), 

1397hh(e)(7)]. 

69 HHS, Nov. 2014, “Report to Congress Improving the Identification of Health Care Disparities in Medicaid 

and CHIP,” http://www.medicaid.gov/medicaid-chip-program-information/by-topics/quality-of-care/downloads/4302b-rtc-2014.pdf. 

70 See, e.g., National Quality Forum, Addressing Performance Measure Gaps in Home and Community-Based Services to Support Community Living: Initial Components of the Conceptual Framework: Interim Report, July 15, 

2015, http://www.qualityforum.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=79920. 

71 In monitoring T-MSIS implementation, it is important to distinguish between information about (1) Medicaid eligibility categories that are based on the Supplemental Security Income (SSI) definition of disability, which is extremely 

restrictive; and (2) the six questions about potential disability status that were adopted in 2011, pursuant to ACA 

§4302, and that are set out in the body of the report. Only if answers to the latter questions are incorporated into 

T-MSIS data will policymakers and the public learn how well Medicaid serves a broad range of people with disabilities, many of whom do not receive Medicaid based on SSI disability. The latter group will be particularly large in 

states that expand Medicaid eligibility to include all non-elderly adults with incomes up to 138 percent of the FPL 

because numerous people with disabilities will be able to qualify in those states based on income alone.

72 Such competition will primarily involve consumers who are ineligible for federal subsidies. Most who qualify for 

subsidies are likely to favor QHPs over other individual plans, since subsidies can be used only with QHPs.

73 28 CCR 1300.67.2.2 (c)(7)(B).

52 National Council on Disability
74 See, e.g., National Disability Navigator Resource Collaborative, 2014, “Fact Sheet #8: Medically Frail Status as 

an Exemption to Receiving Medicaid Alternative Benefit Plan with Essential Health Benefits,” Washington, DC: 

American Association on Health and Disability, http://www.nationaldisabilitynavigator.org/wp-content/uploads/

Materials/Fact-Sheet-8-medically-frail-ABP.pdf. 

75 Kaiser Commission on Medicaid and the Uninsured, Sept. 2012, “Medicaid Financing: An Overview of the Federal Medicaid Matching Rate (FMAP),” https://kaiserfamilyfoundation.files.wordpress.com/2013/01/8352.pdf. 

ACA established some elevated FMAP rates for various categories of care, such as for HCBS coverage under 

Social Security Act Section 1915(k) and the first eight quarters of health home services. 

76 CMS has made clear that: (1) given more than one basis for Medicaid eligibility, the consumer can select his 

or her eligibility category; and (2) as long as a low-income adult has not received a formal determination of disability, under the same standards that apply to SSI, the state can claim the highly enhanced FMAP that applies 

to low-income adults. CMS, March 23, 2012, “Medicaid Program; Eligibility Changes Under the Affordable Care 

Act of 2010. Final Regulations.” Federal Register. Vol. 77, No. 57. 17144; CMS, May 22, 2012. “Medicaid/CHIP 

Affordable Care Act Implementation. Answers to Frequently Asked Questions: Eligibility Policy.” http://www.

medicaid.gov/state-resource-center/FAQ-medicaid-and-chip-affordable-care-act-implementation/downloads/Eligibility-Policy-FAQs.pdf. 

77 42 CFR 435.916(a)(2).

78 Even before ACA, Medicaid regulations required states to make “ex parte” redeterminations of eligibility, whenever possible. Put differently, renewal was required, without asking anything from the enrollee, whenever information available to the state demonstrated continuing eligibility. See, e.g., Health Care Financing Administration. April 7, 2000, and April 22, 1997, Dear State Medicaid Director letters, http://downloads.cms.gov/cmsgov/

archived-downloads/SMDL/downloads/smd040700.pdf, http://downloads.cms.gov/cmsgov/archived-downloads/

SMDL/downloads/SMD042297.pdf. These requirements were not always followed, however.

79 These policies did not involve Express Lane Eligibility, an option through which children who receive other public benefits are deemed eligible for Medicaid. Southern Institute on Children and Families, March 2009, “Medicaid and CHIP Retention: A Key Strategy to Reducing the Uninsured,” http://www.thesoutherninstitute.org/docs/

publications/MedicaidCHIPRetention.pdf. 

80 In a small number of so-called “209(b) states,” SSI recipients do not automatically qualify for Medicaid. Some 

states also make recipients of SSI state supplemental payments ineligible for Medicaid.

81 Wisconsin Department of Health Services, July 27, 2011, “3.1.5 Administrative Renewals,” Medicaid Eligibility 

Handbook Release 11-02, https://www.dhs.wisconsin.gov/medicaid/meh-coversheet-11-02.pdf. 

82 David Goldfarb and Joseph Rosenberg, 2012, “9.09 Recertification, Reauthorization and Tape Matches,” New 

York Elder Law, Danvers, MA: Mathew Bender and Company. 

83 Tricia Brooks, Feb. 2009, “The Louisiana Experience: Successful Steps to Improve Retention in Medicaid and 

SCHIP,” Washington, DC: Georgetown University Health Policy Institute Center for Children and Families, http://

ccf.georgetown.edu/wp-content/uploads/2012/04/The-Louisiana-Experience.pdf.

84 See 42 CFR 435.1015; CMS, March 2013, “Medicaid and the Affordable Care Act: Premium Assistance,” http://

medicaid.gov/Federal-Policy-Guidance/Downloads/FAQ-03-29-13-Premium-Assistance.pdf. 

85 CMS, Medicaid and the Affordable Care Act: Premium Assistance.

86 Plans with healthier-than-average members pay into the risk-adjustment system, and those with sicker-thanaverage members are reimbursed by the risk-adjustment system. This has the effect of shifting premium dollars from the former to the latter plans. This system seeks to pool all risk within the individual market, so that 

premiums reflect that market’s average risk, rather than the risk level among the members of a particular plan.

87 CMS, Medicaid and the Affordable Care Act: Premium Assistance.

88 Nearly two in five (39 percent) QHP-sponsoring issuers offered Medicaid managed care plans as well. Association for Community-Affiliated Plans, updated January 2015, “Overlap Between Medicaid Health Plans and QHPs 

in the Marketplaces: An Examination,” http://www.communityplans.net/Portals/0/2015%20ACAP%20QHP%20

Analysis%20Brief.pdf.

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 53
89 45 CFR 156.1250(c).

90 Letter from Marilyn Tavenner, CMS Administrator, to John Selig, Director, Arkansas Department of Human 

Services, December 31, 2014, http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/ar/ar-private-option-ca.pdf. 

91 Medicaid and CHIP Payment and Access Commission, March 2015, “CHAPTER 5: Premium Assistance: Medicaid’s Expanding Role in the Private Insurance Market,” Report to Congress on Medicaid and CHIP, https://

www.macpac.gov/wp-content/uploads/2015/03/March-2015-Report-to-Congress-on-Medicaid-and-CHIP.pdf. 

92 ACA §1302(b)(1).

93 45 CFR 156.100(a). 

94 45 CFR 156.100(c).

95 They are, in order, the second-largest small-group plan, the third-largest small-group plan, and the largest national plan that serves federal employees (with size, in each case, determined by enrollment). For supplementing the general benchmark plan to provide pediatric oral and dental benefits, the state can choose between 

the most highly-subscribed plan for federal employees and CHIP benefits. If the state does not make a decision, the former plan becomes the benchmark for oral and dental pediatric coverage. 45 CFR 156.100 (b)(2) 

and (c).

96 45 CFR 156.115(a).

97 45 CFR 156.115(b). For the certification that a plan’s actuary must complete to offer substitute benefits, see 

CCIIO, “EHB-Substituted Benefit (Actuarial Equivalent) Supporting Documentation and Justification,” http://

www.cms.gov/CCIIO/Programs-and-Initiatives/Health-Insurance-Marketplaces/Downloads/Chapter10cEHBSubstitutedBenefitJustification-Ver1-021315.pdf (undated). 

98 For prescription drug standards, see 45 CFR 156.122, as revised in HHS, Feb. 27, 2015, “Patient Protection and 

Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2016; Final Rule,” 80 Federal Register 

10750, 10871. 

99 ACA’s language apparently requires states to pay the cost of benefit mandates that exceed EHB, regardless of 

when those mandates went into effect. ACA § 1311(d)(3)(B). However, state benefit mandates in effect during 

calendar year 2012 were met by all benchmark plans except those offered to federal employees. As a result, 

CMS relieved states of the need to pay for benefit mandates in effect during 2012. This decision was characterized as a “transition” policy, in effect for 2014 and 2015 and subject to reexamination for 2016 and beyond. 

CCIIO, December 16, 2011, “Essential Health Benefits Bulletin,” http://www.cms.gov/CCIIO/Resources/Files/

Downloads/essential_health_benefits_bulletin.pdf. However, EHB standards enacted for 2016 did not revisit 

the issue. HHS, Notice of Benefit and Payment Parameters for 2016. 

100 45 CFR 156.110(d), 156.115(a)(5), 156.125. See also HHS, Notice of Benefit and Payment Parameters for 2016, 

80 Federal Register at 10811.

101 See generally Justin Giovannelli, Kevin W. Lucia, and Sabrina Corlette, Oct. 2014, “Implementing the Affordable Care Act: Revisiting the ACA’s Essential Health Benefits Requirements, prepared by the Georgetown University Center on Health Insurance Reforms for the Commonwealth Fund,” http://www.commonwealthfund.org/~/media/files/publications/issue-brief/2014/

oct/1783_giovannelli_implementing_aca_essential_hlt_benefits_rb.pdf. 

102 ACA forbids premiums from varying based on health risk factors. Accordingly, plans are likely to compare (1) 

the increased costs expected to result from enrolling high-cost populations to (2) the anticipated risk-adjustment and reinsurance payments that would accompany those populations. Plans have an incentive to avoid 

high-cost populations whose anticipated costs exceed premiums plus projected risk-adjustment and reinsurance payments. 

103 Vernon K Smith, Ph.D., Kathleen Gifford, Eileen Ellis, Robin Rudowitz, and Laura Snyder, Oct. 2014, “Medicaid 

in an Era of Health & Delivery System Reform: Results from a 50-State Medicaid Budget Survey for State 

Fiscal Years 2014 and 2015,” Health Management Associates and Kaiser Family Foundation, http://files.kff.org/

attachment/medicaid-in-an-era-of-health-delivery-system-reform-results-from-a-50-state-medicaid-budget-survey-for-state-fiscal-years-2014-and-2015-report. 

54 National Council on Disability
104 See, e.g., Diane Schanzenbach, 2009, “Experiment Estimates of the Barriers to Food Stamp Enrollment,” Madison, WI: Institute for Research on Poverty, University of Wisconsin- Madison; Eric P. Bettinger, Bridget Terry 

Long, Philip Oreopoulos, and Lisa Sanbonmatsu, Sept. 2009, “The Role Of Simplification And Information In 

College Decisions: Results From The H&R Block FAFSA Experiment,” National Bureau of Economic Research 

Working Paper 15361; Glenn Flores, Milagros Abreu, Christine E. Chaisson, Alan Meyers, Ramesh C. Sachdeva, Harriet Fernandez, Patricia Francisco, Beatriz Diaz, Ana Milena Diaz, and Iris Santos-Guerrero, 2005, “A 

randomized, controlled trial of the effectiveness of community-based case management in insuring uninsured 

Latino children.” Pediatrics. 116:1433–41. http://pediatrics.aappublications.org/content/116/6/1433.full.pdf. 

105 Ari Ne’eman, 2015, Autistic Self Advocacy Network and National Council on Disability, personal 

communication. 

106 Those limits are contained in Internal Revenue Code §§36B(2)(B) and 5000A(f)(1)(A)(ii). ACA §1332(a)(2)(D) expressly authorizes waiving both §§ 36B and 5000A.

107 This may result in consumer cost and coverage effects that CMS would need to consider in deciding whether 

to grant the proposed waiver. 

108 See, e.g., the Arc, undated, “The Community First Choice (CFC) Option,” http://www.thearc.org/page.aspx-

?pid=3045; Elizabeth Dickey, “Understanding Medicaid’s Community First Choice Program,” Nolo, http://www.

nolo.com/legal-encyclopedia/community-first-choice.html (undated). 

109 Kaiser Family Foundation, “Section 1915(k) Community First Choice State Plan Option as of July 2015,” State 

Health Facts, http://kff.org/medicaid/state-indicator/section-1915k-community-first-choice-state-plan-option/, 

See also CMS, “Community First Choice 1915 (k),” http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/home-and-community-based-services/community-first-choice-1915-k.html. 

110 CMS, Jan. 16, 2014, “Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for 

Waivers, Provider Payment Reassignment, and Home and Community-Based Setting Requirements for Community First Choice and Home and Community-Based Services (HCBS) Waivers; Final Rule,” 79 Federal Register 2948. 

111 45 CFR 156.115(a)(5)(i).

112 For example, Arkansas defined habilitative services as “Services provided in order for a person to attain and 

maintain a skill or function that was never learned or acquired and is due to a disabling condition.” CCIIO, undated, “Arkansas EHB Benchmark Plan,” http://www.cms.gov/CCIIO/Resources/Data-Resources/Downloads/arkansas-ehb-benchmark-plan.pdf; and California defined them as “medically necessary health care services and 

health care devices that assist an individual in partially or fully acquiring or improving skills and functioning and 

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.” CCIIO, undated, 

“California EHB Benchmark Plan,” http://www.cms.gov/CCIIO/Resources/Data-Resources/Downloads/california-ehb-benchmark-plan.pdf. 

113 Examples include Delaware and Kansas. See CCIIO, undated, “Delaware EHB Benchmark Plan,” http://www.

cms.gov/CCIIO/Resources/Data-Resources/Downloads/delaware-ehb-benchmark-plan.pdf; CCIIO, undated, 

“Kansas EHB Benchmark Plan,” http://www.cms.gov/CCIIO/Resources/Data-Resources/Downloads/kansasehb-benchmark-plan.pdf. 

114 HHS, Notice of Benefit and Payment Parameters for 2016.

115 “We note that other nondiscrimination and civil rights laws may apply, including the Americans with Disabilities Act, section 1557 of the Affordable Care Act, Title VI of the Civil Rights Act of 1964, the Age Discrimination 

Act of 1975, section 504 of the Rehabilitation Act of 1973 and State law. Compliance with § 156.125 is not 

determinative of compliance with any other applicable requirements.” HHS, Notice of Benefit and Payment 

Parameters for 2016, 80 Federal Register at 10823. 

116 HHS, Notice of Benefit and Payment Parameters for 2016.

117 NAIC, “Health Benefit Plan Network Access and Adequacy Model Act,” October 2015, http://www.naic.org/

store/free/MDL-74.pdf. 

Implementing the Affordable Care Act: A Roadmap for People with Disabilities 55
118 Cal MediConnnect Ombudsman for LA County, Jan. 21, 2015, “Engaging Consumers in Care,” http://www.

calduals.org/wp-content/uploads/2015/01/January-21-2015-Providers-Summit-Session-3A.pdf; Gerald Craver, 

Meredith Lee, and Sarah Broughton, March 23, 2015, “Review of Commonwealth Coordinated Care Beneficiary Focus Groups (CY 2014),” http://www.dmas.virginia.gov/Content_atchs/altc/2014%20Focus%20

Group%20Summary%2003.23.15.pdf. 

119 Cal MediConnect, Engaging Consumers in Care; Virgil Dickson, April 21, 2015, “Future of dual eligible 

demonstrations questioned due to low enrollment,” Modern Healthcare, http://www.modernhealthcare.com/

article/20150421/NEWS/150429978/future-of-dual-eligible-demonstrations-questioned-due-to-low. 

120 Indeed, some of the above findings about problems experienced by waiver programs come from state-commissioned evaluations’ early reports. 

121 See, e.g., Community Catalyst, Consumer Advisory Committees, http://www.communitycatalyst.org/

resources/tools/meaningful-consumer-engagement/consumer-advisory-committees. 

122 ACA § 1302(b)(4)(G) and (H).

123 CCIIO, Dec. 16, 2011, “Essential Health Benefits Bulletin,” http://www.cms.gov/CCIIO/Resources/Files/Downloads/essential_health_benefits_bulletin.pdf. 

124 45 CFR 156.110(b)(2)(ii), (c)(2)(ii). 

125 Some of these precedents in current regulations were developed to fill gaps in group coverage, which, before 

ACA’s enactment, often did not cover habilitative services or pediatric dental and vision care. CCIIO, Essential 

Health Benefits Bulletin. However, prescription drugs were covered by nearly all small group plans, and CMS 

has recently promulgated prescription drug standards that go well beyond the specifics of EHB-benchmark 

coverage. HHS, Notice of Benefit and Payment Parameters for 2016. 

126 CCIIO, Essential Health Benefits Bulletin.

127 Ibid., p.15, https://www.cms.gov/CCIIO/Resources/Files/Downloads/essential_health_benefits_bulletin.pdf.

56 National Council on Disability