Strengthening the HCBS Ecosystem

Responding to Dangers of Congregate Settings during COVID-19

National Council on Disability

November 16, 2022
National Council on Disability (NCD)

1331 F Street NW, Suite 850

Washington, DC 20004

Strengthening the HCBS Ecosystem: Responding to Dangers of Congregate Settings 

during COVID-19

National Council on Disability, November 16, 2022

Celebrating 38 years as an independent federal agency

This report is also available in alternative formats. Please visit the National Council on Disability 

(NCD) website (www.ncd.gov) or contact NCD to request an alternative format using the following 

information:

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202-272-2004 Voice

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The views contained in this report do not necessarily represent those of the Administration, as this and 

all NCD documents are not subject to the A-19 Executive Branch review process.
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.

November 16, 2022

The President

The White House

Washington, DC 20500

Dear Mr. President:

The pandemic has shone a light on our nation’s insufficient investment in Home and Community 

Based Services (HCBS). These critical services are a life-line for millions of people with disabilities 

who desire to live independently in their respective communities. The lack of investment in HCBS 

was a significant contributor to the needless deaths of people with intellectual and developmental 

disabilities (IDD) living in congregate settings during the pandemic. On behalf of the National Council 

on Disability (NCD), I submit the report, Strengthening the HCBS Ecosystem: Responding to Dangers 

of Congregate Settings during COVID-19.

Building on NCD’s report Deinstitutionalization: Unfinished Business (2012) and the 2021 Progress 

Report: The Impacts of COVID-19 on People with Disabilities, this report describes significant barriers to 

an effective, adequate system of HCBS, and provides recommendations that will be responsive to the 

nation’s present and growing need for community-based living.

COVID-19 was the number one cause of death for people with IDD during 2020, with a 

disproportionate death toll of those residing in congregate settings such as group homes and nursing 

homes. These settings were hotbeds for transmittal of the coronavirus, and though people with IDD in 

such settings were highly susceptible to infection and death from the virus, they were largely unable 

to transition out of these settings. Tragically, disabled residents who were hospitalized after contracting 

the virus were commonly returned to these settings to shelter in place, rather than be transferred to 

home or low census community-living options where social distancing and other Center for Disease 

Control and Prevention recommended health protocols could have been implemented. The shelter in 

place decision was a stark contrast to the quick transfer of other populations in institutional settings, 

such as prisoners and residents of homeless shelters who were transferred to low census settings 

with positive results in containing the spread of the virus. Because of the ensuing death toll, the shelter 

in place strategy for people with disabilities has been referred to as “dying in place.” The unnecessary 

deaths are a potent reminder that institutionalization is detrimental and failed model.

The integration mandate of the Americans with Disabilities Act and the Supreme Court’s decision in 

Olmstead v. L.C. are the bases for moving people with disabilities, who can and want to live in the 

community, out of institutionalized settings. However, this report points out continued barriers that 

restrict the ability to do so. In the year preceding the pandemic, HCBS transitions under Money Follows 

the Person dropped 46% and the transitions that took place were largely not people with IDD. State 

HCBS programs, a major avenue for moving people out of institutionalized settings, have long waiting 

Letter of Transmittal

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

202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov
lists. Wait times can span years and are partially fueled by persistent barriers, such as the nationwide, 

prolonged shortage of direct care workers which was exacerbated by the pandemic. Direct care 

workers are a critical part of HCBS because they provide the services that people with disabilities need 

in order to live in the community. The dearth of this crucial workforce slowed or prevented transfers to 

the community and put people in the community at risk of institutionalization. The report also describes 

the persistent barrier of a national lack of affordable, accessible, housing. Public Housing Authorities are 

utilizing vouchers from HUD to transition people out of institutions, but demand for affordable housing 

far outpaces supply. Wait lists for low-income housing are often years long and the amount of units 

designed for wheelchair users or those with sensory impairments is inadequate to meet the nation’s 

needs. A recent report estimates that there is a shortage of 3.4 million affordable rental units, which 

pales in comparison to the shortage of affordable and accessible rental homes. 

In addition to the Federal integration mandate, it is well established that living in one’s home with 

supports is safer than living in an institutionalized setting, costs less, and is the desire of most 

individuals. But data from the Centers for Medicare and Medicaid Services show that in 2018 there 

were almost 600,000 people with IDD living in institutionalized settings who were on HCBS waiting 

lists to transition to the community. A 2021 report raises this number to over 800,000. The latest 

census data also increases the urgency for action, as age is a predictor of disability: by 2030, more than 

one in five people in the U.S. will be sixty-five or older, and by 2035, the number of people over eightyfive will nearly double. As with group homes, nursing homes were deadly places to reside during the 

pandemic and as the population grows older it becomes more imperative that older individuals with 

disabilities can remain in their homes with necessary supports. 

The U.S. has come a long way in its efforts on deinstitutionalization, but still has much to do. COVID-19 

showed the danger of continued reliance on the institutionalization model, and the hundreds of 

thousands deaths beg for immediate, concrete actions to address the barriers to an adequate and 

robust HCBS system now, before the next public health emergency.

We welcome the opportunity to discuss the issues raised in this report and to support your 

Administration in implementing the recommendations to improve the lives of people with disabilities.

Respectfully submitted,

Andrés J. Gallegos, J.D.

Chairman

2 National Council on Disability

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

U.S. House of Representatives.)
National Council on Disability Members and Staff 

Members 

(Council membership at the time of the vote)

Andrés J. Gallegos, Chairman

Jim Brett, Vice Chair

Jim Baldwin

David D’Arcangelo

Munr Kazmir, M.D.

Rick Rader, M.D.

Neil Romano

Daniel C. Schreck

Mary G. Vought

Staff

Anne C. Sommers McIntosh, Executive Director

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Director of Administration, Finance, and Operations

Stacey S. Brown, Staff Assistant

Kimie Eacobacci, Legislative Affairs Specialist

Netterie Lewis, Administrative Support Specialist

Amy Nicholas, Senior Attorney Advisor

Nick Sabula, Public Affairs Specialist

Amged Soliman, Senior Attorney Advisor

Ana Torres-Davis, Senior Attorney Advisor

Keith Woods, Financial Management Analyst

Strengthening the HCBS Ecosystem 3
4 National Council on Disability
Contents

Acknowledgments and Dedication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

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

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Chapter 1: A History of Institutionalization of People with Disabilities . . . . . . . . . . . .  2

Chapter 2: Law and Federal Policies on Transitioning People with Disabilities from 

Institutional to Community Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

The Americans with Disabilities Act and the Olmstead Decision . . . . . . .  2

Federal Incentives on Home- and Community-Based Services . . . . . . . .  2

Money Follows the Person . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

HCBS Settings Rule . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

No Wrong Door Systems: Federal Partnership . . . . . . . . . . . . . . . . . .  3

The U.S. Department of Justice’s Enforcement of the AD

Integration Mandate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Chapter 3: Weaknesses in HCBS Are Laid Bare and Amplified by the Pandemic . . . .  3

I. The Direct Care Workforce Shortage Intensified . . . . . . . . . . . . . . . . . . .  

II. The Lack of Affordable and Accessible Housing Impedes Ability

to Transition to Community Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Wait Lists for Low-Income Housing . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Source of Income Laws: Helping Voucher Holders to 

Obtain Housing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

A Federal Visitability Law Would Help People with Mobility 

Impairments Remain in the Community . . . . . . . . . . . . . . . . . . . . . .  4

HHS and HUD Partnership on Housing . . . . . . . . . . . . . . . . . . . . . . . .  5

III. Inequity in Data Collection Obscured Information on People

with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Racial, Ethnic, and Age Inequities in Data Collection . . . . . . . . . . . . . . . . .  5

Strengthening the HCBS Ecosystem 5
Chapter 4: Federal, State, and Private Efforts to Support Community 

Living During COVID-19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Appendix K, State Plan Amendments, and Medicaid Waivers . . . . . . . . . . 55

American Rescue Plan Act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

Centers for Independent Living Assist in Transitioning People with 

Disabilities from Institutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58

Hospital Discharge Planning Partnership to Support 

Community Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60

Chapter 5: Analyses of Two Women with Disabilities Institutionalized 

During the COVID-19 Pandemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

Lynn’s Story . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

Debra’s Story . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64

Chapter 6: Six Focus Areas That Require Immediate and Simultaneous 

Change for an HCBS System That Meets the Needs of the Nation . . . . . . . . . . . . . . . . 67

Remove the Institutional Bias in Medicaid and Increase 

Funding for HCBS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67

Build a Robust Direct Care Workforce . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67

Increase the Supply of Accessible and Affordable Housing . . . . . . . . . . . . 68

Improve Hospital Discharge Planning to Prevent 

Institutionalization or Reinstitutionalization . . . . . . . . . . . . . . . . . . . . . . . . 68

Maintain COVID-19 Flexibilities Such as Appendix K and 

Section 1135 Waivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68

Improve Data Collection on Residents in All Congregate Settings . . . . . . . 69

Recommendations for Implementation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71

Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79

6 National Council on Disability
Acknowledgments and Dedication

Acknowledgments

The National Council on Disability expresses its appreciation to Dr. Kara Ayers, Ph.D., Assistant Professor 

and Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities 

for her research and drafting of this report. 

Dedication

This report, focused on home and community based services, is dedicated to the late Lois Curtis. 

The lawsuit she filed – L.C. v. Olmstead – led to a landmark Supreme Court decision benefitting people 

with disabilities. L.C. v. Olmstead made living in one’s own community a reality for so many people 

who had been relegated to institutions to live out their lives. When fully integrated and supported in our 

communities, people with disabilities have a better opportunity to live fulfilled lives.

Strengthening the HCBS Ecosystem 7
8 National Council on Disability
Executive Summary

COVID-19 has laid bare what has been the 

reality for so many in our country, who over 

generations have been minoritized and 

marginalized and medically underserved, and 

the pandemic took advantage of the legacy 

of intentional policies that have structurally 

disadvantaged communities over time.1

—COVID-19 Biden/Harris White House 

Health Equity Task Force member

As of June 30, 

2022, COVID-19 

had killed more 

than 1 million people 

in the United States 

and infected over 87 

million others. COVID-19 

disproportionately 

affected people with 

disabilities, both young 

and old, who lived in congregate settings, and, 

at 20 percent of the 1 million deaths, they bore 

the brunt of the pandemic. But this understates 

the reality due to the failure to collect data on 

deaths from COVID-19 among group home 

residents, even after it was clear that those with 

intellectual disabilities were very susceptible 

to contracting and dying of the coronavirus. As 

with other inequities permeating the standard of 

care for people with disabilities, the continued 

institutional bias that makes it easier to house 

certain populations of people with disabilities 

in congregate settings, such as group homes 

and nursing homes, put them in the bullseye 

of COVID-19. More than 800,000 people with 

disabilities are currently in institutionalized 

settings, where infections such as COVID-19 are 

proving most deadly, awaiting supports of 

caregivers and accessible housing to live among 

their family and friends in their homes in their 

communities.

In March 2020, when 

the public health 

emergency started in the 

United States, people 

with disabilities were 

immediately affected, 

acquiring the disease and 

many subsequently 

dying. In New York, for 

example, hospitals knowingly sent patients still ill 

with COVID-19 back to nursing homes, 

contributing to uncontrolled outbreaks that would 

take the lives of many. Group homes for people 

with intellectual and developmental disabilities 

(ID/DD) in New York saw high numbers of 

infections and hospitalizations, but the residents 

of these settings were denied access to the 

state’s stockpile of tests and equipment because 

group homes were not deemed “essential health 

COVID-19 disproportionately 

affected people with disabilities, 

both young and old, who lived 

in congregate settings, and, at 20 

percent of the 1 million deaths, they 

bore the brunt of the pandemic

Strengthening the HCBS Ecosystem 9
care settings.” The virus spread rapidly through 

group homes via contact with direct care workers 

who entered such settings on a daily basis 

without the benefit of personal protective 

equipment. A study of New York State residents 

found that the mortality rate of those with ID/DD 

in residential group homes was nearly eight 

times higher than the general population.2 While 

COVID-19 was an unexpected public health 

emergency, the dangers inherent in congregate 

care facilities had previously been well 

established. The COVID-19 response devalued 

the lives of people with disabilities who resided 

in congregate settings and resulted in 

unacceptable, unnecessary deaths.

As seen in New York and Ohio, corruption 

worsened the already 

deadly impacts of 

COVID-19.3,4 In 2021, an 

ongoing FBI investigation 

was instigated to 

examine New York 

governor Andrew 

Cuomo’s underreporting 

of COVID-19 deaths 

in nursing homes. The underreporting may 

have been motivated by widespread criticism 

by lawmakers and advocates5 of New York’s 

March 25, 2020, directive requiring nursing 

homes to accept patients with COVID-19 after 

they had been discharged from hospitals.6

Ohio’s deception in the pandemic response was 

later revealed by CMS who found falsified data 

and backdated test results. The public interest in 

COVID-19 had waned by then, and state officials 

faced minimal questions about their role in 

nursing home accountability to keep residents 

safe. Current policies overlook potential conflicts 

of interest between state politics and the 

A study of New York State residents 

found that the [COVID-19] mortality 

rate of those with ID/DD in 

residential group homes was nearly 

eight times higher than the general 

population

nursing home industry. The Ohio nursing home 

industry invested $6 million in state politics 

over a five-year period.7 Accountability for past 

corruption and oversight to prevent future 

violations were missing from the United States’ 

COVID-19 response.

Despite the civil rights protections of 

Sec. 504 of the Rehabilitation Act of 1973, 

the Americans with Disabilities Act, and the 

Olmstead Supreme Court decision, a federal 

bias toward institutionalization (institutional 

bias) continues to make it easier to place a 

person with a disability in a congregate facility 

rather than in their home with supports. 

Through Home- and Community-Based Services 

(HCBS) waivers, which provide states flexibility 

in how and to whom 

they offer Medicaid 

benefits, an alternative 

to institutionalization 

can be offered by 

providing services in 

the community, but 

that requires there 

to be accessible, 

affordable housing in the community, which 

overwhelmingly there is not. As a result, that 

prevents transition to community living and 

makes it easier to institutionalize people with 

disabilities. HCBS services vary by state, and 

HCBS waivers are not portable. Additionally, the 

direct care worker shortage leaves many at risk 

of remaining institutionalized or at risk of being 

institutionalized in the future—a situation that 

worsened during the pandemic.

While the pandemic was the impetus for 

some policy and law changes that aimed to keep 

people safer, the pandemic elevated the chronic 

problems and weaknesses in the HCBS system 

10 National Council on Disability
that need dire resolution. The preventable deaths 

of residents of congregate setting screams for 

an end to institutional bias. This will take efforts 

on several fronts, as discussed here, beginning 

with a greater federal investment in HCBS and 

less investment in institutionalized settings. The 

nation’s demographics speak to this need as well, 

as age is a predictor of disability: by 2030, more 

than one in five people 

in the United States will 

be 65 or older, and by 

2035, the number of 

people over 85 will nearly 

double.

Living in one’s home with necessary services 

and support systems is safer than living in an 

institutionalized setting, costs less, and is the 

desire of most individuals. We have come a long 

way in the quest for deinstitutionalization, but 

not far enough. COVID-19 showed the danger 

of continued reliance on the institutionalization 

model, and the hundreds of thousands 

preventable deaths must lead to immediate, 

concrete actions to 

remedy the weaknesses 

in our current HCBS 

system now, before 

the next public health 

emergency.

Building on 

NCD’s report 

Deinstitutionalization: 

Unfinished Business (2012) and the 2021 

Progress Report: The Impacts of COVID-19 on 

People with Disabilities, this report describes 

the weaknesses in the HCBS system, the 

lack of affordable and accessible housing, and 

the shortage of the direct care workforce, 

and provides a plan and recommendations to 

address these chronic problems that will be 

responsive to the nation’s present and growing 

need for community-based living.

Key Findings

■ During the pandemic, conflicting guidance 

issued by the Federal Government 

combined with the 

patchwork state 

system of HCBS 

waivers resulted in a 

maze of fragmented 

supports for people 

with disabilities in need of diversion from 

institutionalization.

■ While long-standing laws and court 

precedent (e.g., Olmstead) declare that 

people should receive care in integrated 

settings, the institutional bias hinders 

the goal of community integration: 

institutional settings continue to receive 

waivers or exceptions to meet the 

expectation of an 

individual being in an 

integrated setting. 

It continues to be 

significantly easier to 

place someone in a 

nursing home or a group 

home than in their own 

home in the community.

■ The need for direct care workers to 

assist people with disabilities to live 

independently in the community is at an 

emergency level, and the shortage of direct 

care workers adversely affects millions. 

Contributing factors to the labor shortage 

include low wages and poor benefits, 

The preventable deaths of residents 

of congregate setting screams for 

an end to institutional bias

Living in one’s home with 

necessary services and support 

systems is safer than living in 

an institutionalized setting, costs 

less, and is the desire of most 

individuals

Strengthening the HCBS Ecosystem 11
resulting in chronically high staff turnover 

rates, surges in demand due to COVID-19, 

and a history of racism and sexism that has 

led to segments of the care economy being 

undervalued.

■ The nation lacks the necessary millions of 

affordable, accessible housing units to meet 

its needs. The United States cannot achieve

an adequate system of HCBS without a 

substantial investment in affordable, 

accessible housing for people with 

disabilities. The lack of accessible, affordable 

housing is exacerbated by a lack of oversight 

during federal financially assisted multifamily 

housing construction where the required 

accessible units are 

not constructed or 

not properly 

constructed—

leaving people with 

physical disabilities 

without housing 

options for years.

Key Recommendations

■ Congress should enact legislation that 

includes significant funding for HCBS, 

similar to the $150 billion in HCBS funding in 

the Build Back Better Act, and increase pay 

for the direct care workforce, to facilitate 

individuals to live in the community.

■ Congress should enact legislation within the 

next year, which ends the institutional bias 

by making HCBS a mandatory Medicaid 

service under 1905(a) as proposed in the 

discussion draft of the HCBS Access Act.8

A single, comprehensive HCBS authority 

would alleviate complexity, inequity, and 

administrative costs associated with the 

program.

■ Congress should pass the Fair Housing 

Improvement Act of 2022, a bill to 

amend the Fair Housing Act to prohibit 

discrimination based on source of income, 

veteran status, or military status, to provide 

more housing opportunities people with 

disabilities, enabling more people to 

transition from institutionalized settings to 

the community, and supporting the nation’s 

HCBS system.

■ Congress should increase HUD’s 

appropriation to fund at least one 

compliance specialist in each of HUD’s ten 

regional offices to enable 

U.S. Housing and Urban 

Development (HUD) 

to increase its ability 

to monitor compliance 

with newly constructed 

housing, substantially 

altered housing, housing 

with other alterations, 

and program accessibility. These staff 

would have expertise in construction and 

federal regulations on housing accessibility 

and proactively monitor federally financed 

housing construction in the ten federal 

regions.

■ Congress should increase HUD’s 

appropriation to fund a pilot program to 

engage local planning and codes compliance 

departments across the United States in 

identifying potential federal accessibility 

issues in new construction, substantial 

alterations, housing with other alterations, 

and existing housing to enable HUD to 

The United States cannot achieve an 

adequate system of HCBS without a 

substantial investment in affordable, 

accessible housing for people with 

disabilities

12 National Council on Disability
broaden its efforts at compliance with both 

Fair Housing Act Accessibility Standards and 

Section 504 requirements.

■ Congress should assist HUD in increasing 

the stock of accessible housing by 

increasing its appropriation to fund a 

Home Modification Fund Program or Home 

Modification Voucher to assist people 

with disabilities to make modifications to 

their existing homes. This will help people 

avoid institutionalization if they become 

disabled and live in an inaccessible home 

and open housing opportunities for people 

with disabilities who are transitioning 

out of institutions that require accessible 

housing.

■ Congress should require the Centers for 

Medicare & Medicaid Services (CMS) to 

maintain the Appendix K Waiver,9 which 

allows for paid family caregivers. Use of 

Appendix K Waiver saved lives and avoided 

institutionalization of people with disabilities 

during the COVID-19 public health 

emergency and was responsive to the direct 

care workforce shortage.10

■ Congress should require the Department 

of Labor (DOL) to immediately devise a 

plan to address the direct care workforce 

labor shortage by, for example, creating 

apprenticeship programs to incentivize 

individuals to become direct care workers 

and setting and raising standards for pay, 

benefits, and working conditions.

■ The Department of Labor and CMS should 

jointly or separately establish a public–

private partnership that matches federal 

dollars with productive private capital to 

increase funding for HCBS and increase 

wages and benefits for direct care workers.

■ Congress should commission a special 

bipartisan committee to investigate the 

local, state, and Federal Governmental 

failures during the pandemic that led to the 

disproportionate deaths of those residing in 

congregate settings.

■ Congress should require the U.S. 

Department of Health and Human Services 

(HHS) to work with state, local, Tribal, and 

territorial health departments to establish 

efforts to track and report the health and 

health status and outcomes of people in 

congregate settings.

■ The Centers for Disease Control and 

Prevention (CDC) should collect data on 

all people living in all types of congregate 

settings and ensure that they are kept on a 

priority status for testing, vaccinations, and 

movement to lower census setting in case 

of a similar public health emergency.

■ Congress should require CMS to adjust the 

payment methodology and quality metrics for 

Medicare Home Health Services to ensure 

that beneficiaries with multiple comorbidities 

or complex care needs have access to 

the level of care required in their homes, 

including the support of home health aides.

Strengthening the HCBS Ecosystem 13
According to the most recent estimates 

from the Centers for Disease Control and Prevention (CDC), 4.5 million

people were consumers of home health 

in 2016—to have 58% of providers 

discontinuing some amount of in-home 

services to a population this large has 

had serious implications for independent living and continued ability to live 

in one’s home

To understand the magnitude of the loss 

and disruption of services and supports 

caused by the pandemic, it is essential to 

recognize who is not counted by the estimates. An estimated 820,000 people with

disabilities in the United States were not 

included in loss estimates as they did 

not lose services during the pandemic 

because they never had the services 

to begin with—even though they had 

applied for them. They were on waiting

lists waiting-sometimes decades long-to 

receive HCBS services

14 National Council on Disability
Introduction

People with disabilities living in congregate 

settings, which include nursing 

homes, acute 

rehabilitation centers, 

intermediate care 

facilities, developmental 

centers, and various 

group settings for 

people with intellectual 

and developmental 

disabilities, are at the 

greatest risk of death 

from COVID-19. A 2020 

analysis estimated 

that 35,000 nursing home residents died due 

to COVID-19, representing 42% of the total 

deaths in the United 

States in the first year 

of the pandemic.11 This 

number represents both 

seniors and non-aging 

disabled residents. That 

is the equivalent of a 

Boeing 747 crashing 

every single day for 

75 days. While vaccine rollouts slowed the 

number of deaths, low vaccination rates among 

congregate living staff led to outbreaks and 

more casualties of people with disabilities who 

were unable to transition out of congregate 

settings despite decades of the community 

living mandate.

Almost all people 

with disabilities who 

have died in congregate 

settings from COVID-19 

have been served 

by the United States 

long-term services and 

supports (LTSS) system. 

Approximately 14 million 

Americans need LTSS; 

these services serve 

people of any age, from 

children to seniors.12 In fact, 40% of adults 

who need these supports are younger than 

65 years old.13 LTSS 

encompasses a broad 

range of medical and 

personal care assistance, 

for example, assistance 

with activities of daily 

living (such as eating, 

bathing, and dressing) 

and instrumental 

activities of daily living (such as preparing meals, 

managing medication, and housekeeping). Longterm services and supports include, but are not 

limited to, nursing facility care, adult daycare 

programs, home health aide services, personal 

Approximately 14 million Americans 

need LTSS; these services serve 

people of any age, from children to 

seniors.... 40% of adults who n

these supports are younger than 

65 years old

A 2020 analysis estimated that 

35,000 nursing home residents 

died due to COVID-19, representing 

42% of the total deaths in the 

United States in the first year of the 

pandemic ... That is the equivale

of a Boeing 747 crashing every 

single day for 75 days

Strengthening the HCBS Ecosystem 15
[P]eople with disabilities younger 

than 30 years old make up the fastest 

growing nursing home population 

care services, transportation, and supported 

employment as well as assistance provided by 

a family caregiver. The LTSS that help people 

live in their homes or in other community-based 

settings are called Home and Community-Based 

Services (HCBS).

Medicaid, administered by the Centers for 

Medicare and Medicaid Services (CMS), is 

the primary payer of formal LTSS, financing

approximately 62% of LTSS costs.14 Research 

is clear: Almost all individuals who need LTSS 

want to live at home.15 The financial savings of 

supporting people at home instead of congregate 

settings has long been established.16,17,18

According to a 2021 study, the annual median 

cost of care at a congregate facility, like a nursing 

home, is $105,850 per 

resident per year for a 

private room and $94,900 

for a semi-private room, 

compared to $67,760 for 

a home health aide and 

$20,280 for adult day services caring for a person 

at home.19 But saving taxpayer funds while 

ensuring maximum integration into, or remaining 

in, the community requires a strong workforce 

of direct care providers, like home health aides. 

However, the longstanding direct care workforce 

shortage, made worse by the pandemic and 

by federal policies that create barriers to 

receipt of home health services, has created a 

national emergency for people with disabilities 

- increasing the risk of institutionalization, or 

remaining in an institution, for those who cannot 

obtain their services. This leaves older persons 

unable to receive basic supports in their homes 

and at risk for going without assistance or being 

institutionalized.

The Americans with Disabilities Act integration 

mandate, the U.S. Supreme Court’s Olmstead 

decision, and federal programs have contributed 

to progress in shifting 

from requiring people 

with disabilities to 

receive services primarily 

in nursing homes and 

other institutional 

settings to a HCBS.22 Nationally, in 2018, 56% 

of Medicaid LTSS spending was for HCBS.23

Despite this investment, people with disabilities 

Financial Savings of HCBS

Median cost of care, congregate facility:

■ $105,850 / resident / year, private room

■ $94,900 / resident / year, semi-private room

Median cost of care, caring for a person at 

home:

■ $67,760 / person / year, home health aide

■ $20,280 / person / year, adult day services

Direct Care Workforce Crisis

In a 2021 survey, home health agencies were 

asked if they could provide aides for 8 hours a 

day or 28 hours a week, the amount provided 

by Medicare. Only 2% of responding agencies 

reported that they would be able to provide 20 

or more hours of services per week.20 Home 

health agencies attribute this to the inability to 

recruit and retain staff.21

16 National Council on Disability
younger than 30 years old make up the fastest 

growing nursing home population, and 820,000 

people with disabilities are on wait lists to 

transfer out of these settings—settings which 

turned out to be the most dangerous places to 

be during the pandemic—hundreds of thousands 

of people with disabilities died of COVID-19 in in 

congregate settings.24,25

More than 75% of states 

(41 of 50) have an HCBS 

Waiver waiting list for at 

least one waiver type.78

Because states can limit 

HCBS spending based on budgetary restrictions, 

they can choose-and limit-how many people they 

serve.

The devastation of COVID-19 has been felt 

worldwide, but its impact has not been evenly 

distributed among populations. The public 

health emergency created an intense urgency 

to move people from congregate settings to 

the community. For example, the jeopardy 

caused by living in close quarters resulted in a 

dramatic decision by the criminal justice system. 

Recognizing the risk of massive loss of life, 

it responded by releasing more than 100,000 

people from federal and state prisons between 

March and June 2020.26

People living in homeless 

shelters were relocated 

to lesser density settings. 

Positivity rates in a 

Chicago shelter dropped 

from 50% to 2% after residents were moved 

from congregate settings to housing in the 

community that allowed for social distancing.27

Despite great risks, however, the systems 

responsible for the institutionalization of people 

with disabilities did not mirror this swift response 

to move people with disabilities to lower density 

Figure 1: Bar graph showing that the amount of people on wait lists for HCBS 

waivers has grown every year since 2008

820,000 people with disabilities 

are on wait lists to transfer out of 

[nursing homes] 

Strengthening the HCBS Ecosystem 17
settings. For example, people with intellectual 

and developmental disabilities (ID/DD) were more 

likely to become infected with COVID-19, need 

hospitalization, and die. Early in the pandemic, it 

became imminently clear that people with ID/DD 

living in congregate care settings were at an even 

greater risk for severe COVID-19 outcomes,28 but 

rather than moving them to safer settings, they 

were told to shelter-in-place. Confirmation of 

deadly errors and mass deception has emerged 

from nursing homes resulting in the shocking 

reality that many decision-makers were very 

aware of the risks and consequences of keeping 

people with disabilities in congregate settings. 

Some advocates have commented that the result 

of this policy was “dying in place.”

The unnecessary deaths of people with ID/DD 

living in congregate settings during the COVID-19 

pandemic revealed the weaknesses in the 

system and the critical need to recognize of the 

disproportionate impact of COVID-19 on people 

with disabilities who were institutionalized and 

create a response that is equitable, immediate, 

and transformative. Improving our current HCBS 

system to safeguard people with disabilities 

from the disproportionate death and illness that 

took place during the COVID-19 pandemic must 

be a top policy priority so that the tragedy that 

occurred is never repeated.

This report expands on NCD’s findings in 

our 2021 Progress Report: COVID-19’s Impact 

on People with Disabilities, describes the main 

weaknesses in the HCBS system, and proposes 

a plan to substantially strengthen the HCBS 

‘ecosystem’ that will increase community living 

options with necessary services and supports to 

meet the current and future needs of people with 

disabilities across the life span.

18 National Council on Disability
Methodology

T

his report is based on multiple sources of 

data, information, and experiences. Six 

convening sessions were held between 

October and December 2021. Four of these 

sessions were made up of a mixed group of 

healthcare policy experts, Center for Independent 

Living directors and staff, policy think tank 

members, advocates for the aging, community 

living experts, direct support providers, and HCBS 

users. Two sessions were designated for specific 

stakeholder groups: One session was designed 

for the staff of the Administration on Community 

Living in HHS, and another for state Medicaid 

directors and staff. From November 2021 through 

February 2022, approximately twenty-five 

interviews were conducted. Convening session 

and interview participants answered a series of 

open-ended questions.

Second, an ongoing literature review took 

place from August 2021 through May 2022 on 

the impacts of COVID-19 on community living, 

institutionalization, and HCBS for people with 

disabilities. Scientific journals, legal journals, 

news coverage, policy briefs, and white papers 

were reviewed. Previously published pieces 

about these core topics were included in the 

review. Relevant state and federal policies and 

guidance related to the topic were analyzed. 

On January 27, 2022, public comment on 

HCBS and its need for change in light of the 

COVID-19 pandemic was heard during the NCD 

Quarterly meeting. NCD asked: What federal and 

policy state levers hold the greatest potential 

to transition people out of congregate care 

facilities? What funding streams have you seen, 

or do you think could be effective in bolstering or 

building up HCBS? What are potentially positive 

solutions, for example, pilot programs, to many 

of the barriers encountered by people trying 

to acquire HCBS? The comments from these 

convening sessions and interviews are integrated 

into this report. Figure A illustrates our initial 

framing of the challenges and barriers for Home 

and Community-Based Services.

Strengthening the HCBS Ecosystem 19
20 National Council on Disability

Figure A: An iceberg graphic illustrates challenges and barriers for home and 

community-based services. Above the surface of the water, a lack of funding and

workforce shortages are described. Below the surface, the following barriers are

listed: a confusing patchwork HCBS, ableism and paternalism in public policy, 

historical exclusion of disability in community, lack of accessible housing, 

institutional bias, and a strong, well-funded nursing home lobby
Chapter 1: A History of Institutionalization of 

People with Disabilities

T

he last century has seen a significant shift 

in the government’s role in supporting 

efforts to include people with disabilities 

into their communities.29 At the start of the 

twentieth century, people with disabilities who 

required assistance in their daily lives received 

that assistance in a large public institution or 

from their families, who largely didn’t receive 

financial or social support from the federal or 

state government.22 Hundreds of thousands 

of people with, intellectual disabilities, and 

developmental disabilities 

(ID/DD) and those with 

psychiatric disabilities 

were considered to 

require institutionalized 

care - separated and 

segregated from their 

communities. Many 

institutions had terrible 

living conditions and abused residents. Advocates 

like Dorothea Dix advocated fiercely for states 

to open institutions as a path to alleviate the 

oppression she witnessed people with disabilities 

experience without needed supports.30

A 2022 publication detailing the history of 

institutionalization documents reports of medical 

experimentation, controlling staff, neglect, and 

racism.31 Dr. William Bronston, a doctor from 

the notorious Willowbrook State School in 

New York, described institutions as “places of 

such towering misery and human humiliation 

and violence.”32 Pressure mounted for the U.S. 

government to intervene. In the 1960s a series 

of class action lawsuits and greater scrutiny of 

institutions’ dehumanizing conditions, ignited a 

long-term deinstitutionalization movement that 

would eventually create a service delivery system 

to support people with disabilities to live in their 

communities. Early reforms led to a wave of 

decrees directing states to improve conditions 

in institutions, however, 

the abuse of people with 

ID/DD who are living in 

institutions, including 

children, continues 

today.33

In the 1970s, legal 

challenges moved the 

goal from improving 

conditions in public institutions to the elimination 

of institutions. There was a growing understanding 

that many people with disabilities who needed 

substantial care could live in their communities 

if provided supports rather than being hidden 

away in abusive, degrading, conditions. Even in 

the absence of abuse and neglect, residents of 

institutions lacked basic privacy, had no control 

over how they spent their time, and no freedom – 

all because they had a disability.34 A recognition 

Even in the absence of abuse and 

neglect, residents of institutions 

lacked basic privacy, had no control 

over how they spent their time, and 

no freedom – all because they had a 

disability

Strengthening the HCBS Ecosystem 21
that grew that people with disabilities should 

not have to be institutionalized despite history’s 

failure to respect their humanity.35 Mostly 

parent-led advocacy organizations leveraged this 

recognition to catalyze deinstitutionalization of 

people with intellectual 

and developmental 

disabilities.36

Later, grassroots 

organizations led by 

people with disabilities, 

including Centers for 

Independent Living, amplified the efforts for 

deinstitutionalization.

In the 1970s, states began a slow and uneven 

path to deinstitutionalization. By 2018, 17 states 

closed all large state-run institutions for people 

with intellectual or developmental disabilities. 

However, 17,557 people still lived in 115 large 

state-run institutions in thirty-four states. The 

number of people living in large state-run IDD 

institutions was fewer than 100 in 8 states, 

between 100 and 1,000 in 22 states, and more 

than 1,000 in 4 states.37 More people with 

ID/DD began receiving services from their state 

ID/DD agencies in their 

homes or smaller census 

congregate settings. 

Comparison of people in 

and outside of institutions 

provided considerable 

evidence of numerous 

measurable beneficial outcomes of living in 

the community for people with disabilities.38

Community living improves behavioral outcomes, 

life satisfaction, and the ability to independently 

perform daily living tasks.39,40

The historical failures and successes of the 

deinstitutionalization movement culminate in two 

starkly contrasting conclusions. For people with 

Figure B: Number of people served by state ID/DD/DD agencies by fiscal year 

has increased steadily

41 While the number of people with ID/DD living in these 

congregate settings is declining, it has stalled in the last few years

Community living improves 

behavioral outcomes, life satisfaction, 

and the ability to independently 

perform daily living tasks

22 National Council on Disability
psychiatric disabilities, many scholars describe 

its consequences as “disastrous” because 

the closing of psychiatric institutions without 

transitional support led to homelessness for 

many former residents.42 The positive outcomes 

of closing these institutions has been less 

reported than the challenges related to a growing 

homeless population in the United States, which 

policy makers continue to disagree on how to 

address.43 The deinstitutionalization of people 

with developmental and intellectual disabilities 

has been less controversial but also a quagmire in 

the dynamics of public policy. The paternalization 

of people with ID/DD, or the desire to control 

their lives with stated intentions of ensuring 

safety, is a major barrier for the integration of 

people with ID/DD into our communities. While 

the deinstitutionalization of psychiatric institutions 

was hindered by people’s unfounded fears of 

their own safety from people with psychiatric 

disabilities, the freedom of people with ID/

DD is hindered by claims that their safety will 

be endangered by living in the community, 

discounting the dangers of congregate living. For 

the purposes of this report, we will consider one 

urgent call for deinstitutionalization of all people 

with disabilities, regardless of type of disability.

Shared by both deinstitutionalization 

movements is the significant cost-savings 

in supporting people in communities 

rather than institutions. Even with costs of 

deinstitutionalization, the annual expenditures for 

HCBS (approximately $42,486 per person) are 

significantly less than the annual cost of state 

institutions (approximately $188,318 per person).44

While the cost of living in the community 

with supports is lower, it is still largely out of 

reach for most families and has increased over 

time. See Figure C for median annual costs of 

LTSS in 2020.45

Strengthening the HCBS Ecosystem 23

Figure C: Compares average annual costs of a private nursing home room 

($105,850), a semi-private nursing home room ($94,900), living in the community 

with a home health aide ($67,760), and adult day services ($20,280)
As more people with disabilities began 

to live in their communities, more began 

to advocate for their preference of smaller 

settings. People wanted a range of care 

options. Various groups, advocating for differing 

interests helped shape policy on community 

living. Deinstitutionalization advocates in the 

1970s and 1980s, demanded due process 

procedures before depriving a person of 

their freedom, to try to affect change, while 

opposition came from parent organizations and 

from labor unions who objected to institution 

closures because of the loss of jobs in large 

institions.28 Some parent organizations continue 

to oppose community integration citing what 

they view to be unfair burdens of time, effort, 

and money on caregivers and family members 

of people with disabilities.

Earlier due process efforts were successful 

but lacked the infrastructure necessary to 

build supports in the community. While an 

important focus was maintained on ending 

institutionalization, efforts to date have lacked 

clarity in building community-based supports, 

including HCBS, mutual support networks, and 

the direct support provider workforce, to facilitate 

community living instead of institutionalization. 

In the 1990s, advocates shifted their attention to 

federal antidiscrimination policies and state funding 

to build community support service delivery 

systems. In large part, this is where the current 

focus remains.

24 National Council on Disability
Chapter 2: Law and Federal Policies on Transitioning 

People with Disabilities from Institutional to 

Community Settings

The Americans with Disabilities Act 

and the Olmstead Decision

The preamble of the Americans with Disabilities 

Act of 1990 (ADA) states:

Historically, society has tended to isolate 

and segregate individuals with disabilities, 

and, despite some improvements, such 

forms of discrimination against individuals 

with disabilities continue to be a serious 

and pervasive social problem . . . the 

Nation’s proper goals regarding individuals 

with disabilities are to assure equality of 

opportunity, full participation, independent 

living. . . .46

Title II of the ADA specifically identifies 

unjustified “segregation” of persons with 

disabilities as a form 

of discrimination,47 and 

prohibits public entities 

from discriminating 

against qualified 

people with disabilities 

or excluding them from participating in, or 

denying them the benefits of the entities’ 

services, programs, or activities.48 The ADA 

regulation implementing Title II specifically 

requires public entities to “administer services, 

programs, and activities in the most integrated 

setting appropriate to the needs of qualified 

individuals with disabilities.” This is referred to as 

“integration regulation.”49

In 1999, nearly a decade after the passage of 

the ADA, the Supreme Court considered whether 

institutionalization qualified as discrimination 

under Title II of the ADA and marked the first 

time the U.S. justice system addressed a public 

entity’s obligation to provide programs and 

services in an integrated setting.50 The case 

was brought on the behalf of two women with 

psychiatric and intellectual disabilities who 

were residents of a psychiatric institution in 

Georgia.51 Although their treatment professionals 

concluded that each of the women could be 

cared for appropriately in a community-based 

program, the women remained institutionalized.52

The lawsuit alleged that Georgia violated Title 

II by not placing them 

in a community-based 

program once treating 

professionals determined 

that such placement 

was appropriate. The 

Court held that, under Title II, states are required 

to place persons with mental disabilities in 

community settings rather than in institutions 

when the State’s treatment professionals have 

determined that community placement is 

appropriate, the transfer from institutional care 

Title II of the ADA specifically 

identifies unjustified “segregation” 

of persons with disabilities as a 

form of discrimination 

Strengthening the HCBS Ecosystem 25
to a less restrictive setting is not opposed by 

the affected individual, 

and the placement 

can be reasonably 

accommodated, 

taking into account 

the resources available 

to the State and the 

needs of others with 

mental disabilities.53 As a 

result, states developed 

frameworks within which 

to make these decisions.

Although the ADA and the Olmstead 

decision were considerable victories for the 

deinstitutionalization movement, they did not 

result in as massive of transition from institutions 

to the community that many hoped. Moreover, 

the Olmstead three-prong test created limits 

that hinder the pace of deinstitutionalization: 

(1) A doctor authorized by the state determines 

whether an institutionalized person is capable of 

living in the community; (2) the institutionalized 

person must want to live in the community; and 

(3) a state can consider budgetary limitations 

when determining how many people with 

disabilities to support in the community.40

Federal Incentives on Home- and 

Community-Based Services

For certain people with disabilities, living in 

the community requires help with carrying out 

activities of daily living. Assistance with many 

of these activities are not covered by typical 

health care and private insurance. Many people 

rely on unpaid family members to provide this 

assistance but the severity of one’s disability, 

the absence of such supports to live in one’s 

home, or personal preferences means reliance 

on family support alone is not a sustainable over 

a person’s lifetime.

Medicaid is the primary 

payer for both the acute 

health care needs and 

long-term supports needs 

of people with disabilities 

living in the community, 

which centers the Federal 

Government as the entity 

which created, and must 

fix, the current HCBS 

infrastructure. Funding 

mechanisms for programs that address the needs 

of HCBS consumers, like housing, health, and 

community living, combine federal and state 

funds. As the United States has moved toward 

deinstitutionalization, federal programs have been 

created to assist this movement and address 

emerging needs.

Money Follows the Person

Money Follows the Person (MFP) is a Medicaid 

demonstration program that provides funding to 

states to enable more people to receive long-term 

Olmstead Three-Prong Test

(1) A doctor authorized by the state determines 

whether an institutionalized person is 

capable of living in the community; 

(2) the institutionalized person must want to 

live in the community; and 

(3) a state can consider budgetary limitations 

when determining how many people with 

disabilities to support in the community.

Medicaid is the primary payer for 

both the acute health care needs 

and long-term supports needs of 

people with disabilities living in 

the community, which centers the 

Federal Government as the entity 

which created, and must fix, the 

current HCBS infrastructure

26 National Council on Disability
services and supports in community settings, 

rather than institutions. The federal grant program 

assists individuals transition from nursing homes 

and congregate settings back to their homes 

and communities by 

helping states to remove 

barriers in state laws and 

budgets that promote 

institutional care. States 

have the option of 

participating in MFP and MFP services vary by 

state.54 Over 107,000 MFP program participants 

have transitioned from institutions back into their 

community between 

2008 and 2020.55 Many 

hundreds of thousands 

more remain on waiting 

lists to return to the 

community.

The Consolidated 

Appropriations Act of 

2021 authorized the 

Centers for Medicare 

& Medicaid Services (CMS) to provide new 

funding opportunities for states to participate in 

MFP. As of August 2022, there were more than 

forty states and territories participating in the 

program.56

On March 31, 2022, CMS notified current MFP 

grantees that it is increasing the reimbursement 

rate for MFP “supplemental services.” These 

services are now 100% federally funded with 

no state share.57 CMS also announced that it is 

expanding the definition of supplemental services 

to include additional services that can support an 

individual’s transition from an institution to the 

community, including short-term housing and food 

assistance.58 These changes will help to address 

barriers to community transition for eligible 

individuals in institutions, increase community 

transition rates, and increase the effectiveness of 

the MFP demonstration.

As shown in Figure D, MFP has been more 

successful transitioning 

people with physical, 

psychiatric, and 

adult-onset cognitive 

disabilities (e.g., 

dementia) than it has 

been in transitioning people with intellectual 

and developmental disabilities.59 Causes of this 

disparity are unknown.

The bundle of MFP 

programs and services 

are categorized as Home 

and Community-Based 

Services (HCBS). MFP 

provides federal funding 

support for HCBS for the 

first 365 days after the 

program participant moves 

from the institution and 

to a home in the community.60 After the first year, 

the MFP program participant is funded under other 

available state Medicaid programs, like waivers.

Table A: Examples of available benefits 

through the MFP program.

Personal care 

assistance

Home modifications 

for safety and 

accessibility

Respite care 

for unpaid and 

informal caregivers

Adult day services

Home health care Personal emergency 

response systems

Home delivered 

meals

Assistive technology

As of August 2022, there were more 

than forty states and territories 

participating in the program

Strengthening the HCBS Ecosystem 27

MFP has been more successful 

transitioning people with 

physical, psychiatric, and adultonset cognitive disabilities (e.g.

dementia) than it has been in 

transitioning people with intellectual 

and developmental disabilities
And although home based care and 

community living is less expensive and has 

been shown to have numerous benefits for 

individuals, all states are 

required to pay for care 

in a nursing home but 

are not required to pay 

for HCBS. This shows 

the contradiction in 

federal policy towards 

community living: a 

recognition of cost 

effectiveness and human 

benefit, as well as the 

ability to implement 

the ADA, but continuing to require states to 

pay for nursing homes and not HCBS. Along 

with the federal bias toward nursing home 

care, many states share or act on this bias by 

continuing to house people with disabilities in 

institutions when they need ongoing medical 

and other support needs, rather than invest in 

HCBS. MFP helps work 

against institutional bias 

by providing a financial 

benefit to states for an 

individual’s first year of 

community living.

HCBS Settings Rule

Merely transitioning a 

person with disabilities 

from an institution to 

another address, often 

to a smaller census but still segregated setting, 

does not achieve the vision of community 

integration. In 2014, CMS issued the Medicaid 

Home and Community-Based Services (HCBS) 

This shows the contradiction in 

federal policy towards community 

living: a recognition of cost 

effectiveness and human benefit, 

as well as the ability to implement 

the ADA, but continuing to require 

states to pay for nursing homes and 

not HCBS

Figure D: Many more people (91,540) with physical, psychiatric, or adult-onset 

cognitive disabilities have been transitioned out of congregate settings through 

the MFP program compared to fewer people with ID/DD (14,856)

28 National Council on Disability
Settings Rule (Settings Rule), which added 

specific requirements to ensure integrated 

settings were truly 

community-based. All 

settings that receive 

Medicaid HCBS funds 

must ensure participants 

have choices about 

their daily lives and 

can participate in the 

community in ways 

that reflect their individual interests. States 

were initially given a March 2022 deadline to 

complete this transition. Despite opposition 

from many in the disability community to a 

delay, this target date has been pushed back to 

March 2023.

The Settings Rule is necessary to standardize 

definitions of community-based living. Some 

Medicaid providers describe their programs as 

“community-based” but still enforce restrictions 

on how a person can decorate their personal 

space, when they can access food, and who 

can visit them in their home. The Settings 

Rule raises the bar for providers to ensure that 

recipients of their Medicaid-funded services 

are afforded rights and freedoms comparable 

to those without disabilities in the community. 

When implemented, the Settings Rule will apply 

to all HCBS-funded programs, including day and 

employment supports. To continue to receive 

Medicaid funding, states are encouraged to 

provide individualized rather than program-wide 

services and schedules.

Much of the requirements to meet the Settings 

Rule are reflected in self-directed waiver services. 

This service delivery model of self-direction for 

HCBS has grown substantially over the last several 

decades. Self-direction provides individuals who 

receive HCBS greater flexibility and control over 

their own services. There are two forms of selfdirection: (1) Individuals 

have control over hiring 

and supervising their 

personal care attendants 

and direct care workers 

and (2) Individuals 

have control over an 

individualized budget and 

decide what services and 

supports are purchased.61 The former is ‘employer 

authority,’ and the latter are ‘budget authority’. An 

extensive body of literature, including evaluation 

of various HCBS demonstrations, has highlighted 

the benefits of this model. An evaluation in 2022 

shows that there are 260 self-directed programs 

nationally62 with two-thirds of these funded by 

Medicaid.

States have been planning their transition 

to comply with the Settings Rule standards of 

community-based services for years. They have 

submitted Transition Plans to be approved by 

CMS and are required to identify which settings 

Funding for HCBS

Money Follows the Person

■ Federal funding for first 365 days after 

participants moves from institution to a 

home in the community

Other available state Medicaid programs, like 

waivers

■ After the first year following an individual’s 

transition from institution to a home in the 

community

The Settings Rule raises the bar for 

providers to ensure that recipients 

of their Medicaid-funded services 

are afforded rights and freedoms 

comparable to those without 

disabilities in the community

Strengthening the HCBS Ecosystem 29
might warrant “heightened scrutiny.” Heightened 

scrutiny settings will require special permission 

to use HCBS funds because they may limit some 

freedoms for recipients. By recognizing them 

through a transparent process, state entities and 

CMS can collaborate to determine whether these 

settings meet criteria for funding. If settings or 

programs do not meet the new requirements, 

they may transition their funding structure to rely 

on private funds. If implemented and enforced as 

intended, the Settings Rule would prevent federal 

funding from continued support of segregated, 

restrictive settings, which claim but do not meet 

standards of community integration.

The Administration 

for Community Living 

(ACL) and CMS held a 

webinar in June of 2022 

to provide updates on 

the Settings Rule. They 

recognized concerns 

that not every setting 

in the country will be 

fully compliant with all 

requirements of the 

settings rule by the 

March 17, 2023, deadline, and developed a 

strategy that aligns the focus of federal support 

and state compliance activities with the realities 

of the direct care workforce crisis that was 

exacerbated by the COVID-19 pandemic. This 

multi-faceted approach contains the following 

components, in order to continue federal 

reimbursement of HCBS beyond the transition 

period: States must receive final Statewide 

Transition Plan approval; States and providers 

must be in compliance with all settings criteria 

NOT directly impacted by pandemic disruptions, 

including pandemic-related workforce 

challenges; Time-limited corrective action plans 

(CAPs) are available to states to authorize 

additional time to achieve full compliance with 

settings criteria that ARE directly impacted by 

pandemic disruptions, when states document 

the efforts to meet these requirements to the 

fullest extent possible, and are in compliance 

with all other settings criteria.63

No Wrong Door Systems: Federal 

Partnership

ACL, CMS, and the Veterans Health 

Administration (VHA) partnered in 2011 as part of 

the Balancing Incentive Program to establish the 

No Wrong Door (NWD) 

Systems to enhance 

consumer choice and 

help states create a 

more efficient and costeffective system for 

Long-Term Services and 

Supports (LTSS). A wide 

range of organizations 

can be designated by 

states to assist people 

in getting assessed 

and connected to services that best meet their 

needs. Centers for Independent Living (CILs), 

Aging and Disability Resource Centers (ADRCs), 

Area Agencies on Aging (AAAs), Medicaid 

agencies, and Peer-to-Peer programs are among 

the wide range of organizations involved in NWD 

systems.

As illustrated in the Figure E, the NWD 

schematic starts with coordinated public outreach 

with key referral systems.64 The next step is 

person-centered counseling, which results in 

a Person-Centered Plan. Individuals and their 

families are helped to determine their eligibility 

Self-direction provides individuals 

who receive HCBS greater 

flexibility and control over their 

own services ... An evaluati

in 2022 shows that there are 260 

self-directed programs nationally 

with two-thirds of these funded by 

Medicaid

30 National Council on Disability
for a wide range of public programs and how 

these fit with privately funded options. Finally, 

State programs and their leadership deliver 

services.

NWD invokes crucial elements of connecting 

people who need HCBS to the services that 

exist. The scale of its 

impact, however, has 

been limited by its 

funding and reach year 

to year. The federal 

funding made available 

to states to carry 

out NWD systems change activities is seed 

money for states and local partners agencies 

to influence system-wide change with other 

existing funding streams and is not enough to 

fund a state’s NWD implementation efforts in 

full. People continue to feel disconnected from 

and confused by the complex, multi-layered 

HCBS system.

Potentially, the NWD schematic could have 

been leveraged to rapidly connect people with 

disabilities who wanted 

out of institutions during 

the peaks of pandemic 

to what they needed 

to move into their 

communities. NWD 

Project Coordinators 

were not consistently deemed essential 

employees during lockdowns.65 In this case, the 

doors that should have been propped wide open 

during the time of a public health emergency, 

The scale of [the No Wrong Door 

system’s] impact, however, has 

been limited by its funding and 

reach year to year

Strengthening the HCBS Ecosystem 31
32 National Council on Disability

Figure E describes the schematic or framework for the No Wrong Door 

collaboration. The four key elements include state governance, public outreach

and coordination with key referral sources, person-centered counseling, and 

streamlined eligibility for public programs). A brief overview on each key

element is included in the illustration
were too frequently left closed or were unknown 

entirely.

The U.S. Department of Justice’s 

Enforcement of the ADA Integration 

Mandate

The U.S. Department of Justice (DOJ) enforces 

the ADA’s integration mandate to ensure people 

with disabilities live in the most integrated setting 

possible. DOJ has investigated allegations of 

discrimination based on Olmstead against several 

states and entered into settlement agreements 

that help thousands of people with disabilities to 

live in their communities with necessary supports. 

The importance of these enforcement efforts 

cannot be overstated; 

they are critical to 

implementing the 

integration mandate and 

realizing the intent of the 

ADA for full inclusion. 

Although every action 

taken by DOJ cannot be 

reflected in this report, 

we note several that were 

taken or resolved during 

the COVID-19 pandemic.

In January of 2022, DOJ filed a Statement 

of Interest (SOI) in an action on behalf of 

children with mental health disabilities who 

allege they have experienced a revolving door 

of institutionalization due to Colorado’s failure 

to arrange and provide for medically necessary 

care. The plaintiffs allege that they are currently 

segregated, or at risk of segregation in, 

institutions because of the State’s failure to 

provide them with intensive HCBS. The SOI 

clarifies that (1) plaintiffs who are segregated 

or at serious risk of segregation due to a lack 

of community-based medically necessary 

services can establish they have an injury in fact 

sufficient to confer standing, and (2) unnecessary 

segregation constitutes discrimination on 

the basis of disability under the ADA and the 

Rehabilitation Act.66

In March of 2022, DOJ notified Colorado that 

it is violating the ADA’s integration mandate in its 

provision of Long-Term Services and Supports 

to adults with physical disabilities. Following 

an investigation, DOJ found that Colorado has 

failed to meet its obligations under the ADA by 

unnecessarily segregating adults with physical 

disabilities in nursing facilities and failing to 

ensure that individuals have a meaningful 

opportunity to live 

in community-based 

settings appropriate to 

their needs.67

In May of 2022, DOJ 

entered into a settlement 

agreement with Rhode 

Island to resolve 

allegations that the State 

failed to provide a minor 

with community-based 

Medicaid services that 

the State had authorized, and that allowed him 

to remain in his parent’s home rather than a 

residential treatment facility. His parents alleged 

that while the State authorized their son to 

receive 25 to 34 hours per week of communitybased services, their son only received, on 

average, half of the weekly authorized hours. 

As a result, the parents feared that their son 

would be forced to leave their home and move 

to an institution. Under the agreement, Rhode 

Island will, for example, modify its policies so 

that children with intellectual and developmental 

NWD Project Coordinators were 

not consistently deemed essential 

employees during lockdowns. In this

case, the doors that should have 

been propped wide open during the 

time of a public health emergency, 

were too frequently left closed or 

were unknown entirely

Strengthening the HCBS Ecosystem 33
disabilities will receive the community-based 

services that they are authorized; allow families 

to receive services from different providers; and 

provide oversight to make sure children with 

disabilities receive authorized community-based 

services. The minor will have an individualized 

service plan with the services necessary for him 

to live at home, and the State will pay $75,000 in 

damages.

In 2021, DOJ entered into a settlement 

agreement with Maine to resolve a complaint 

alleging that its restrictions on services placed a 

young man with intellectual disabilities at serious 

risk of having to move from his own home to a 

group home or institution.68 In 2020, DOJ found 

that Maine was violating Title II of the ADA’s 

integration mandate in its provision of services 

under one of the State’s Medicaid waiver 

programs by failing to provide the complainant 

with necessary services in the most integrated 

setting appropriate to the complainant’s needs, 

and failed to reasonably modify its service 

program to avoid discrimination, placing the 

complainant at serious risk of unnecessary 

segregation. The agreement requires Maine 

to implement remedial measures, including 

establishing and implementing a process 

for individuals to obtain an exception to the 

waiver program’s cap on in-home services, and 

modifying the program to ensure that members’ 

individual needs and preferences determine 

the services they receive and the setting(s) in 

which they receive them. It also requires Maine’s 

Department of Health and Human Services to 

provide the young man access to all needed 

in-home services and pay $100,000 in damages.

34 National Council on Disability
DOJ entered into an Olmstead settlement 

agreement with North Dakota in December of 

2020.69 The settlement requires the state to 

support community living and divert people with 

disabilities from nursing homes, provide greater 

access to HCBS waivers, 

and fortify peer support 

programs.

In December 2019, 

DOJ filed a Statement of 

Interest (SOI) in the case 

of Alexander v. Mayhew. 

In Alexander, individuals 

on a wait list for a home 

and community-based 

services Medicaid Waiver 

allege that Florida’s 

administration of its long-term care system for 

people with physical or age-related disabilities 

who qualify for nursing facility care places them 

at risk of nursing facility placement. The SOI 

highlights the well-settled principle that a state 

may violate the ADA even while carrying out 

CMS approved state plans, waiver services, and 

amendments because a state’s obligations under 

the ADA are independent of, and distinct from, 

Medicaid requirements.70

DOJ’s commitment 

to upholding the ADA 

is a demonstrated 

impactful driver 

of change in the 

movement toward 

community integration, 

but more is needed. The 

Department’s initiation 

of investigations, 

development of 

settlement agreements, 

and intervention in class action lawsuits has 

forced systemic change in several states, 

where, without its intervention, there is no 

indication that these states would have achieved 

needed improvements.

The SOI highlights the well-settled 

principle that a state may violate 

the ADA even while carrying out 

CMS approved state plans, waiver 

services, and amendments because 

a state’s obligations under the ADA 

are independent of, and distinct 

from, Medicaid requirements

Strengthening the HCBS Ecosystem 35
36 National Council on Disability
Chapter 3: Weaknesses in HCBS Are Laid Bare and 

Amplified by the Pandemic

T

he COVID-19 pandemic and stay-at-home 

orders presented unique challenges for 

HCBS recipients, leading to diminished 

access to supports in the community.71 Many 

adult day centers closed or drastically reduced 

attendance. Some people were reluctant to 

allow caregivers inside their homes. Some HCBS 

providers became ill and needed to quarantine. 

Reduced access to HCBS caused an exacerbation 

of other needs, like 

access to regular 

healthcare. Several states 

allowed for emergency 

modification to HCBS 

with the goal to reduce 

transitions of people 

from the community to 

congregate settings.

A variety of HCBS 

are necessary to 

meet unique needs of 

recipients. There are also several diverse kinds of 

HCBS providers—combined, they provide a net 

of services that are individualized to meet the 

various needs of people with disabilities to live 

in their communities. The direct care workforce 

shortage already plagued the HCBS system but 

there is universal agreement that it worsened 

during the COVID-19 pandemic. Most states 

reported the permanent closure of at least one 

Medicaid HCBS provider during the pandemic.72

A study by the American Network of Community 

Options and Resources (ANCOR) found 58% 

of HCBS providers planned to discontinue 

programs and services, a 70.6% increase in 

providers discontinuing services since the start 

of the pandemic.73 Adult day health programs 

were most likely to close followed by providers 

of in-home services. 

According to the most 

recent estimates from 

the Centers for Disease 

Control and Prevention 

(CDC), 4.5 million people 

were consumers of 

home health in 2016—to 

have 58% of providers 

discontinuing some 

amount of in-home 

services to a population 

this large has had serious implications for 

independent living and continued ability to live in 

one’s home.

To understand the magnitude of the loss and 

disruption of services and supports caused by 

the pandemic, it is essential to recognize who 

is not counted by the estimates. An estimated 

820,000 people with disabilities in the United 

A study by the American Network of 

Community Options and Resources 

(ANCOR) found 58% of HCBS 

providers planned to discontinue 

programs and services, a 70.6%

increase in providers discontinuing 

services since the start of the 

pandemic

Strengthening the HCBS Ecosystem 37
States were not included in loss estimates as 

they did not lose services during the pandemic 

because they never had the services to begin 

with—even though they had applied for them.74

They were on waiting 

lists waiting-sometimes 

decades long-to receive 

HCBS services. While 

some states do not 

maintain waiting lists, no 

state has an adequate 

HCBS system for the 

residents who need it. 

Most of this estimated 

number are people with 

ID/DD.75 Compounding 

the problem, the 

demand for HCBS is 

expected to increase 

by 60% over the next 

20 years.76 Waiting lists could get even longer, 

causing some to wonder whether the system 

could collapse.77

One convening session participant for 

this report stated, “At some point, our supply 

(of HCBS) is so much less in capacity and 

competency than our demand that we have to 

recognize we’re going backwards not forwards.” 

This concern was echoed 

in the 2021 ANCOR 

study that found 77% of 

providers were turning 

away new referrals, a 

16.7% increase since 

the beginning of the pandemic.57 Quality, too, 

has gone down with 40% of providers reporting 

higher frequencies of reportable incidents 

compared to pre-pandemic levels.56 Waiting lists 

are numeric representations of the institutional 

bias because placement in a nursing home or 

institutional setting is mandatory but home and 

community-based services are not, so states can 

and do limit HCBS.

I. The Direct 

Care Workforce 

Shortage 

Intensified

Direct care workers 

(DCWs)are an essential 

workforce, and there 

are several titles used to 

describe them, including 

personal care assistants, 

personal assistance 

services, home health 

aide, certified nursing 

assistant, and home care 

aide. They are the most 

important individuals for directly assisting people 

with disabilities so that they can live in their 

communities, but as has been long recognized, 

the United States has had a critical level shortage 

of DCWs that has impacted HCBS. As detailed 

in our 2021 progress report,78 the direct care 

workforce shortage has been a serious barrier to 

HCBS for a long time and is caused by several 

factors that have yet to 

be addressed, including 

low wages, high turnover, 

no health insurance, and 

limited opportunities for 

career advancement. 

Home health and personal care workers had 

a median hourly wage of only $11.57 in 2019. 

The wages are so low that nearly 20% of care 

workers live in poverty and more than 40% rely 

on some form of public assistance.79 Many HCBS 

According to the most recent 

estimates from the Centers for 

Disease Control and Prevention 

(CDC), 4.5 million people were

consumers of home health in 

2016—to have 58% of providers 

discontinuing some amount of inhome services to a population this 

large has had serious implications 

for independent living and continued 

ability to live in one’s home

[T]he demand for HCBS is expected 

to increase by 60% over the next 

20 years

38 National Council on Disability
workers are also immigrants with a large fraction 

undocumented.80

A 50-state survey conducted by Kaiser 

Family Foundation found direct care workforce 

shortages to be the pandemic’s most significant 

impact on HCBS.81 The President’s COVID-19 

Health Equity Task force also recognized the 

seriousness of the direct 

care workforce shortage 

and the need to invest 

in community living 

options. It recommended 

federal investment and 

pandemic response 

that helps people in 

congregate settings 

transition successfully 

to safer settings, plans for stepdown between 

settings, and improved wages and benefits for 

the direct care workforce.82

As COVID-19 spread across the United 

States, DCWs continued to shoulder the 

responsibilities of providing essential care 

to millions of people 

with disabilities and 

older people, and 

demand for them 

surged, however, the 

pandemic exacerbated 

the shortage of DCWs 

due to lack of testing 

and sufficient personal 

protective equipment 

(PPE), fear of exposure 

to COVID-19 infection, lack of COVID-19 testing, 

required long hours of work, reliance on public 

transportation, lack of accessible childcare, 

competing family obligations and potential 

infection risk to family members. Also, DCWs 

were not recognized as “essential workforce” 

by local law enforcement and were not 

prioritized for vaccination.83 Many more DCWs 

left the workforce after contracting the virus. 

Others left to take care of family members or 

protect themselves from exposure, making 

an already too small of a workforce to support 

people with disabilities 

to live in the community, 

even smaller. 

Structural deterrents 

to maintaining this 

crucial workforce had 

also remained largely 

unaddressed, including 

a history of racism 

and sexism that have 

historically contributed to the devaluing of 

DCWs.84 While the workforce demand has 

exceeded supply for decades, one convening 

session participant summarized, “I’ve worked 

in this space for more than 25 years. It’s always 

been bad. But never this bad.”

In addition to the need 

for DCWs to support 

younger people with 

disabilities to live in the 

community, the demand 

for such workers is 

constantly increasing 

because of the growing 

aging population who 

need these services. By 

2030, more than 1 in 5 

people in the United States will be 65 or older, 

and by 2035, the number of people over 85 will 

nearly double.85 According to the most recent 

projections from the Bureau of Labor Statistics, 

employment of home health and personal care 

Waiting lists are numeric 

representations of the institutional 

bias because placement in a 

nursing home or institutional 

setting is mandatory but home and 

community-based services are not, 

so states can and do limit HCBS

Home health and personal care 

workers had a median hourly wage 

of only $11.57 in 2019. The wage

are so low that nearly 20% of care 

workers live in poverty and more 

than 40% rely on some form of 

public assistance

Strengthening the HCBS Ecosystem 39
aides is projected to grow 33 percent from 2020 

to 2030, much faster than the average for all 

occupations; about 599,800 openings for home 

health and personal care aides are projected 

each year, on average, over the decade.86 This is 

a result of an increasing amount of people, both 

younger and older, receiving care in their homes 

rather than in congregate 

settings.

Every convening 

session held in the 

preparation of this 

report reached the same 

conclusion: DCWs must 

be better compensated. 

This is even more important with an increased 

competition for entry-level workers across the 

larger labor market. Many states have increased 

their minimum wage, which raises the floor 

for all low-income workers, but may narrow 

the gap for compensation for challenging jobs 

in HCBS service compared to less demanding 

employment options. The 

dual crises of workforce 

shortages and the 

pandemic have spurred 

new legislation, notable

innovative practices, 

and the potential for 

significant new public 

investments.87

With respect to 

older persons’ ability to obtain home health 

aides to enable them to remain in their homes 

and avoid institutionalization, a 2022 report by 

the Bipartisan Policy Center on the Medicare 

Home Health Benefit, revealed that changes 

to Medicare’s home health payment system 

is jeopardizing the ability of beneficiaries with 

complex needs and/or those with long-term or 

permanent disabilities to remain in their homes. 

Changes in the payment system encourage 

home health agencies to choose shorter term 

patients and deprioritize home health aides.88

The report includes a 2021 survey of home 

health agencies were asked if they could provide 

aides for 8 hours a day 

or 28 hours a week, 

the amount provided 

by Medicare. Only 2% 

of responding agencies 

reported that they would 

be able to provide 20 or 

more hours of services 

per week.89 Home health agencies attribute this 

to the inability to recruit and retain staff.90 This 

leaves older persons unable to receive basic 

supports in their homes and at risk for going 

without assistance or being institutionalized 

at a time when the need is strong and ever 

increasing.

These ideas 

are important, and 

their development 

must be continued 

as part of finding a 

national solution to 

this workforce crisis. 

To meet the growing 

demand of DCWs, it 

is essential to create a 

workforce pathway. Based on a trade model, 

high school students could complete direct care 

training while earning their diploma and then 

move directly into their job after graduation. 

Opportunities for post-secondary educational 

credit and a career ladder where workers could 

envision upward movement could also fortify a 

Changes in the [Medicare] payment 

system encourage home health 

agencies to choose shorter term 

patients and deprioritize home 

health aides

Many states have increased their 

minimum wage, which raises the 

floor for all low-income workers, 

but may narrow the gap for 

compensation for challenging jobs 

in HCBS service compared to less 

demanding employment options

40 National Council on Disability
2022 ODEP Listening Session on Direct Care Workforce Shortage

In recognition of the severity of the shortage of DCWs, in February of 2022, the Department 

of Labor, Office of Disability Employment Policy (ODEP), hosted a listening session for 

federal partners on the direct care workforce shortage. The session provided findings and 

suggestions from national experts, including on strategies to strengthen career ladders, 

professionalize the field, enhance job quality, and make the profession more inclusive of 

individuals with disabilities. The challenges identified were that funds for services (78% 

which go to benefits/wages) are not adequate to create a sustainable career ladder that 

includes training, workforce development, and career pathways. Second, that it is difficult to 

recruit and retain qualified people into a career with no career pathway, no opportunity for 

growth in a ladder or lattice, and no living wage, and third, that the industry does not have a 

competency-based national credentialing framework mandated by federal agencies. 

Some of the possible solutions proposed by ODEP included:

■ Providing federal funding that includes requirements that states invest in entry-level 

training and career pathways training and implement percentage increases in payment 

levels commensurate with increased credentialing. 

■ Collaborate across federal Departments to align policies and invest in career pathways 

training for direct care works, and exercise existing administrative federal departmental 

authority to provide policy guidance outlining minimum requirements for competencybased credentialing for distinct categories of DCWs.

■ Provide clear federal requirements for states on elements they must include when building 

their reimbursement rates (including adequate wage, benefits, training and specialization 

in Medicaid, including clear DCW reimbursement rate methodologies that consider the full 

cost and value of services and labor including wages, benefits, employment supports; and 

wage and benefit progression based on experience, skills, and credentials.

Strengthening the HCBS Ecosystem 41

pipeline to bring more people into the workforce 

while retaining those who are there. DCWs 

workers could be a meaningful entry-level 

position for physical therapists, occupational 

therapists, social workers, nurses, and childcare 

workers. Work/study, practicum, or internship 

programs in each of these fields could provide 

an influx of entry-level workers to the direct care 

workforce.

Apprenticeship programs also hold potential 

(as shown in Table C below) but currently there 

are few and they are largely underutilized.

II. The Lack of Affordable and 

Accessible Housing Impedes Ability 

to Transition to Community Living

The persistent lack of accessible and affordable 

housing in the United States has been a major 
contributor blocking people with disabilities from 

transitioning to living in the community. All states 

cite insufficient accessible and affordable housing 

options as a major detriment to transition people 

to their communities.95 The scope of the reasons 

for this are beyond the scope of this report, but 

contributing to this 

problem is the failure 

of recipients of the U.S. 

Department of Housing 

and Urban Development 

(HUD)funding to construct 

and correctly allocate 

affordable, accessible housing – a source of 

housing for individuals with low incomes. Most 

often, these construction failures are identified 

after construction is completed because of gaps 

in oversight during the design and construction 

phases of taxpayer funded low-income housing 

development, leaving people with disabilities 

without the housing options that they could have 

had if HUD had the resources and a requirement 

to consistently conduct proactive monitoring of 

construction by recipients of HUD funding.

The disconnect 

means costly and timeconsuming retrofitting 

of housing units—a 

loss to communities, 

who cannot adequately 

house residents, and 

taxpayers who funded the housing—a failure that 

has impacted the ability of people with disabilities 

to transition from institutionalized settings to the 

community. Waiting lists for accessible units have 

been notoriously long for decades and advocacy 

All states cite insufficient accessible 

and affordable housing options as a 

major detriment to transition people 

to their communities

Table C: Direct Care Apprenticeships

State Program Name Funder Approach

Alaska Direct Support 

Professional 

Apprenticeship91

A public-private partnership 

with Alaska Primary Care 

Association and state 

entities

A competency-based model 

that matches apprentices with 

mentors and provides wage 

increases commensurate with 

increased competency

Maryland Direct Support 

Professional 

Apprenticeship 

Program92

A public-private partnership 

with human services 

organization Humanim and 

Maryland Department of 

Labor

Provides on-the-job training 

combined with classroom 

instruction while apprentices 

earn certification through the 

National Alliance for Direct 

Support Professionals

New York Direct Support 

Professional 

Apprenticeship 

Program93

A public-private partnership 

between a community 

college and New York’s 

Department of Labor

Free tuition and on-the-job 

training to apply toward 

a bachelor’s degree and a 

credential as an apprentice

Tennessee Quality 

Improvements in 

Long Term Services 

and Supports or 

QuILTSS94

A public-private partnership 

that includes managed 

care organizations (MCOs), 

TennCare, and state entities

Values-based approach that 

provides paid on-the-job 

training and rewards higher 

level of training with wage 

increases

42 National Council on Disability
groups have consistently asked HUD to increase 

the percentage of required accessible units, but 

this has not occurred.

Recipients of federal housing development 

funds must comply with federal accessibility laws, 

including Section 504 of the Rehabilitation Act of 

1973, the Americans with Disabilities Act, and the 

Fair Housing Act, and HUD has responsibility for 

ensuring compliance by recipients. For federally 

assisted new construction housing projects, 

Section 504 requires 5% of the dwelling units, 

or at least one unit, whichever is greater, to be 

accessible for persons with mobility disabilities. An 

additional 2% of the dwelling units, or at least one 

unit, whichever is greater, 

must be accessible for 

persons with hearing 

or visual disabilities.96

Recipients of federal 

financial assistance 

must adopt policies and 

procedures to ensure 

that people who need the 

accessibility features of 

particular units occupy them, and designate at least 

one individual to coordinate accessibility efforts 

if the recipient employs 15 or more persons.97

HUD regulations do not require recipients to 

maintain a publicly available list of accessible units 

with their disability features, except for Housing 

Choice Voucher units,98 but has included this as a 

provision in Voluntary Compliance Agreements and 

settlement agreements.99

HUD funds units, which state and local Public 

Housing Authorities, community development 

organizations, and non-profit organizations 

build and acquire. HUD has responsibility for 

compliance with federal law by all recipients of 

its funds; however, its Section 504 regulation, for 

example, has limits that should be addressed to 

enable it to proactively address accessibility in 

the construction phase. Currently, the regulation 

allows, but does not require, HUD to conduct 

compliance reviews. It states that HUD “may 

periodically review the practices of recipients to 

determine whether they are complying with this 

part. . . .”100 This does not require or authorize 

HUD to check on accessibility during the design 

or construction phase. Furthermore, it requires 

an investigation only when “a compliance review, 

report, complaint or any other information 

indicates a possible failure to comply with this 

part.”101 These provisions prevent the agency from 

proactively checking to 

ensure accessible units 

are being constructed.

If the Section 504 

regulation were 

amended to allow for this 

additional responsibility, 

HUD should seek 

and Congress should 

approve additional 

funding for compliance staffing. If HUD had 

designated employees in its regional or local 

offices to conduct compliance checks during 

the construction phase, instead of relying on 

recipients of federal funding to self-comply 

with the accessibility requirements as part of 

their obligations for receipt of federal financial 

assistance, issues could be caught early. 

Though federal oversight was designed to 

count on recipient assurances, this has been 

shown to be costly when it fails in the housing 

context: thousands of accessible units not being 

constructed or constructed incorrectly while 

recipients continue to receive millions in taxpayer 

dollars and people with disabilities remain on 

Currently, the regulation allows, 

but does not require, HUD to 

conduct compliance reviews 

These provisions prevent the 

agency from proactively checking 

to ensure accessible units are being 

constructed

Strengthening the HCBS Ecosystem 43
waiting lists. Further, localities’ planning and 

codes compliance departments have no duty to 

check for compliance with federal accessibility 

requirements and largely do not have expertise 

in the FHAct Accessibility Requirements or 

Section 504 requirements, although they would be 

considerable assets in assisting the federal effort 

to ensure local housing developments comply 

with federal accessibility requirements.

Recent examples of developers failing to 

construct such units and the federal and private 

actions to seek compliance illustrate the ongoing 

problem of enforcement after the inaccessible 

units are constructed—a 

highly ineffective manner 

to ensure contract 

compliance for federally 

assisted housing 

development in the United 

States.

A lawsuit filed in 

2012 by the Independent 

Living Center of 

Southern California, Fair 

Housing Council of San 

Fernando Valley, and 

Communities Actively 

Living Independent and Free, alleged that the 

city of Los Angeles, California, misused federal 

funds for housing development by failing to 

comply with its duty to create accessible 

apartments in more than seven hundred 

affordable housing projects—buildings with 

nearly 47,000 units—approved over nearly three 

decades. Disabled residents reported going to 

apartment buildings that were advertised as 

accessible, only to find they were not. In some 

locations, apartments had doorways that were 

too narrow to accommodate wheelchairs, the 

lawsuit states. Bathrooms and kitchens lacked 

the room to accommodate wheelchair users.102

In 2016, the lawsuit was settled without HUD 

involvement, and required the city to ensure 

that 4,000 units are accessible to people who 

use wheelchairs, have hearing impairments or 

live with other disabilities. The city could reach 

that goal by building additional apartments, 

redesigning existing ones or demonstrating that 

units already built are, in fact, accessible.103

HUD has the authority to withhold federal 

funding if developers fail to meet federal 

accessibility requirements. The power of this 

as a lever to compel 

compliance was shown 

in 2019, when HUD 

threatened to withhold 

eighty million dollars 

in federal funding from 

the City of Los Angeles, 

California,104 spurring 

the city to take seriously 

its responsibilities and 

resulting in a settlement 

that resolved longstanding 

HUD findings of 

noncompliance with 

Section 504 of the Rehabilitation Act of 1973 and 

Title II of the Americans with Disabilities Act with 

respect to the City’s affordable housing program. 

HUD’s 2019 Voluntary Compliance Agreement 

(VCA) with the City requires the development of 

10,000 units of new affordable housing over the 

subsequent 10 years, including 1,500 accessible 

units, exceeding existing state and federal 

requirements. The City further committed to 

retrofitting existing housing developments that do 

not meet federal accessibility standards to create 

an additional 3,100 accessible housing units for 

Though federal oversight was 

designed to count on recipient 

assurances, this has been shown to 

be costly when it fails in the housing 

context: thousands of accessible units 

not being constructed or constructed 

incorrectly while recipients continue 

to receive millions in taxpayer dollars 

and people with disabilities remain 

on waiting lists

44 National Council on Disability
individuals with disabilities.105 In addition, the City 

and HUD will work together on an “Enhanced 

Accessibility Program” to incorporate innovative 

accessibility features into future affordable housing 

developments.

In a similar suit, in May of 2018 Access Living, 

a Center for Independent Living in Chicago, 

Illinois, filed a lawsuit alleging that the City of 

Chicago failed to comply with the accessibility 

requirements of the Americans with Disabilities 

Act (ADA), Section 504 of the Rehabilitation 

Act of 1973 (Section 504), and the Fair Housing 

Act (FHAct). From 2004 to 2016, Access Living 

received approximately 50,000 inquiries from 

people searching for accessible, affordable 

housing. Typical stories include: a woman with 

a mobility impairment who had to climb twentyfive stairs because she could not afford to live 

elsewhere; and a man forced to live in a nursing 

home for decades because he could not find 

affordable housing with wide enough doors for 

his wheelchair.

In 2016, Access Living began an investigation 

to determine whether Chicago’s Affordable 

Rental Housing Program was complying with 

the accessibility requirements of the ADA, 

Section 504, and the FHAct. It revealed that 

many developments were not constructed to 

allow individuals who use wheelchairs to enter 

and/or use buildings, rooms, and amenities. 

The case is still in the beginning stages of 

litigation. A ruling in Access Living’s favor 

would impact more than 50,000 rental homes 

in more than 650 developments and require 

Chicago to take steps to ensure that future 

developments comply with federal accessibility 

Strengthening the HCBS Ecosystem 45
requirements,106 however, the litigation could 

take years to conclude, leaving people with 

disabilities waiting indefinitely for much needed 

affordable, accessible housing.

Non-compliance with federal accessibility 

standards is also found in multifamily 

properties that do not receive federal funding. 

The FHAct applies to all multifamily dwellings 

of four or more units, constructed after March 

of 1991, and requires an accessible route 

and certain accessibility features in every 

unit.107 HUD does not have the capacity to 

check every multifamily development built 

in the United States, and local inspectors 

rarely check for federal 

FHAct compliance. 

Violations are therefore 

reported by consumers 

seeking accessible 

housing or fair housing 

advocacy organizations. 

The current system 

of after-construction 

identification of 

violations allows 

inaccessible units to be 

constructed across the nation and costly and 

time-consuming retrofits only after HUD, DOJ 

or consumers get involved in enforcing the 

FHAct—a lengthy process.

In a recent example of a successful 

enforcement effort, in 2021, DOJ filed a lawsuit 

against the developer and owners of eight 

senior living complexes in Alabama, Florida, 

Georgia, South Carolina and Tennessee, after 

an investigation that showed that they violated 

the FHAct and the ADA by failing to build these 

properties with required accessible features for 

people with disabilities. As part of the settlement, 

the defendants agreed to make substantial 

retrofits to remove accessibility barriers at the 

complexes, including more than 1,500 units and 

pay $450,000.108

Wait Lists for Low-Income Housing

A lack of sufficient rental vouchers and strict 

programmatic restrictions are consistent barriers for 

people with disabilities to live in their communities. 

Public Housing Authorities are utilizing vouchers 

from HUD to transition people out of institutions, 

but demand for affordable housing still far outpaces 

supply: a recent report estimates that there is a 

shortage of 3.4 million 

affordable rental units, 

which pales in comparison 

to what is a largely 

unknown estimate of the 

shortage of affordable 

and accessible rental 

homes.109

There are several 

types of housing 

vouchers. Housing 

vouchers, administered by 

Public Housing Authorities (PHAs) are one path out 

of congregate settings for institutionalized people 

with disabilities, but a lack of funding and available 

accessible units has created waitlists which delay 

their use—leaving many to remain institutionalized.

Mainstream Vouchers assist non-elderly 

persons with disabilities afford housing and are 

administered using the same rules as other 

housing choice vouchers. They were created to 

divert people with disabilities and members of 

their household from becoming homeless.110

People with developmental disabilities as well as 

The current system of afterconstruction identification of 

violations allows inaccessible units 

to be constructed across the nation 

and costly and time-consuming 

retrofits only after HUD, DOJ or 

consumers get involved in enforcing 

the FHAct—a lengthy process

46 National Council on Disability
physical disabilities are eligible for the program. 

Mainstream Vouchers are prioritized for people 

with disabilities age 18 to 61 who are living in a 

nursing facility or at risk of institutionalization. 

A 30% increase in Mainstream Vouchers 

was authorized in May 2020, shortly after the 

pandemic struck the 

United States,111 but no 

guidance or suggestion 

was provided on how 

that increase should 

be used. In September 2020, HUD issued 

a notice that stated that many communities 

were “working urgently to house homeless 

populations to help prevent the spread of 

COVID-19 among those living in shelters or 

other close quarters.” There was no mention of 

using these Mainstream Vouchers to help those 

with disabilities transition from institutionalized 

settings where people were most susceptible 

to the worst impacts of the virus.112 In fact, the 

only mention of institutionalized people was 

under criminal screening, 

indicating that it was 

referring to transitioning 

people from penal 

institutions.

Despite the demonstrated benefits of rental 

assistance and effectiveness of vouchers 

specifically, resources fall far short of need. Only 

1 in 4 households eligible for rental assistance 

receive it due to funding limitations. See 

Only 1 in 4 households eligible for 

rental assistance receive it due to 

funding limitations

Source: HUD custom tabulations of the 2019 American Housing Survey; 2018 HUD administrative data; FY2020 

McKinney-Vento Permanent Supportive Housing bed counts; 2019-2020 Housing Opportunities for Persons with 

AIDS grantee performance profiles; and the USDA FY2020 Multi-Family Fair Housing Occupancy Report; HUD 

2020 Picture of Subsidized Households

Strengthening the HCBS Ecosystem 47
Figure G for an illustration of how few eligible 

households receive vouchers and how long 

they wait for the assistance they need. Because 

the need is so much greater than the supply of 

vouchers, housing agencies establish waitlists for 

households interested in receiving assistance.113

For both the Non-Elderly Disabled (NED)114 and 

the Mainstream Housing 

Vouchers, PHAs vary 

extensively in their 

approach to handling 

waitlists. Some use a 

lottery system to allocate 

vouchers. It is difficult, 

however, to get a true 

picture of vouchers. For 

example, databases maintained by HUD and the 

Technical Assistance Collaborative (a nonprofit 

that advances solutions for housing for people 

with disabilities), display conflicting numbers of 

vouchers and many PHAs reporting zero of either 

type of voucher specifically intended for people 

with disabilities.115,116

Millions of other families 

eligible for rental 

assistance never receive 

it because their names 

never rise to the top of 

the waiting list or they 

live in communities 

where the housing 

agency has closed or 

doesn’t keep a waiting 

list.117 Significantly expanding the federally funded 

voucher program, which helps households with 

low incomes rent a modest unit of their choice 

in the private market, would help more people 

with disabilities who are trying to transition from 

institutionalized settings to community living 

instead of facing years of waiting for a housing 

opportunity.

Source of Income Laws: Helping 

Voucher Holders to Obtain Housing

For people with disabilities who have a housing 

voucher, the next step is finding housing, but 

many find that landlords 

refuse to accept them if 

part of their rent is paid 

with a federal housing 

voucher. To address this 

ongoing issue states 

began enacting “Source of 

income” protections, and 

by 2022, thirteen states 

and the District of Columbia had enacted state laws 

or local ordinances providing “source of income” 

protections for housing.118 Though not disability 

specific, these laws provide protection against 

source of income discrimination—breaking down 

another barrier to obtaining housing. Advocates 

have long called for a 

federal law prohibiting 

source of income 

discrimination to address 

housing disparities on a 

national level. To that end, 

in June of 2022, Senator 

Tim Kaine introduced the 

Fair Housing Improvement 

Act of 2022 (S. 4485) to 

protect veterans and lowincome families from housing discrimination.119 If 

enacted, S. 4485 would expand protections under 

the federal FHAct to ban discrimination based on 

source of income, giving more individuals and 

families access to affordable housing and a shot at 

economic mobility.

For people with disabilities who have 

a housing voucher, the next step is 

finding housing, but many find that 

landlords refuse to accept them if 

part of their rent is paid with a federal 

housing voucher

Millions of other families eligible 

for rental assistance never receive 

it because their names never rise to 

the top of the waiting list or they live 

in communities where the housing 

agency has closed or doesn’t keep a 

waiting list

48 National Council on Disability
A Federal Visitability Law Would Help 

People with Mobility Impairments 

Remain in the Community

The majority of single-family homes in the 

United States do not have an accessible 

entry for a wheelchair user or a person with a 

mobility impairment; have narrow doorways to 

bathrooms, and no bedroom on the first floor. The 

lack of these features has serious implications 

for the ability of people to age in their own 

homes and live in the homes of family members, 

even temporarily, if needed or desired. This fact 

has severely impacted people with disabilities’ 

ability to remain in the community or return 

to the community after a hospitalization or 

disabling injury, and continues the segregation 

and isolation of millions of elderly and disabled 

people—of all ages. The implications of this lack 

of basic access include:

■ Severely limits choice in renting or purchasing;

■ Segregation into residences or communities 

built especially for people who are aging or 

disabled;

■ Isolation and prevention of visiting the 

homes of their friends and extended 

family;

■ Requires non-disabled people who 

develop either temporary or permanent 

disabilities—and do not have the resources 

available to modify their homes—to leave 

their homes to live in other houses or even 

institutions; or remain in their homes with 

barriers still in place, unsafe and unable to 

exit; and

■ Forces people with disabilities to live in 

nursing facilities, state hospitals, or other 

institutions.120

For decades, disability advocates have 

proposed that single-family homes that are 

newly constructed, have “visitability” features 

to address the need for housing for people 

with mobility disabilities, to allow people to 

remain in their homes as they age or become 

disabled, allow people with mobility disabilities 

to rent rooms in homes, and to allow relatives 

and friends with mobility disabilities to visit. 

“Visitability” has three features:

1. At least one zero-step entrance (does not 

have to be front entrance)

2. All main floor interior doors with 32 inches 

of clear passage space and hallways no less 

than 36 inches in width

3. One bathroom on the main floor (preferably 

a full bathroom)

There is a smattering of state and local laws 

across the country that require new single family 

homes to have visitability features and have 

resulted in thousands of homes constructed 

with these basic features.121 Most legislative 

proposals requiring single family homes to have 

Features of Visitability

1. At least one zero-step entrance (does not 

have to be front entrance)

2. All main floor interior doors with 32 inches 

of clear passage space and hallways no 

less than 36 inches in width

3. One bathroom on the main floor 

(preferably a full bathroom)

Strengthening the HCBS Ecosystem 49
these features have been met with resistance by 

homebuilder associations who prefer a voluntary 

method of visitability features, however this 

resistance failed in Arizona, when an appeals 

court upheld the Pima County visitability law 

based on the governments rational interest in 

addressing the housing shortage for its aging 

population.122

In his testimony before Congress in support of 

the Inclusive Home Design Act (IDHA) of 2009,123

Kelly Buckland, the former Executive Director 

of the National Council on Independent Living 

(NCIL), stated:

Centers for Independent Living 

throughout the country constantly grapple 

with the lack of accessible and affordable 

housing. One of our biggest challenges 

is not only finding accessible housing for 

people living in the community but finding 

it for those who want to transition out 

of institutions. In many communities the 

biggest obstacle to people with disabilities 

living in their communities is the lack of 

affordable and accessible housing. . . . [T]

he IHDA will allow for the construction of 

accessible single-family housing which will 

permit the aging population to stay in their 

homes, reducing the number that will 

enter a nursing home, allow people with 

mobility impairments to rent rooms in 

existing homes. . . . Most importantly, . . . 

[it] will create accessible housing which 

is needed in order to move people 

50 National Council on Disability
out of institutions and back into their 

communities. Living in the community 

is essential for people of all ages and all 

disabilities to be true members of the 

community—this includes education and 

employment.124

The IHDA was not passed, but it is time for 

Congress to pass similar legislation that will 

increase the availability of accessible housing 

options as part of the burgeoning need for 

housing to support the nations HCBS system and 

to protect people with disabilities from continued 

institutionalization.

HHS and HUD Partnership on Housing

In December 2021, the U.S. Department of 

Health and Human Services (HHS) and HUD 

joined to create “The 

Housing and Services 

Resource Center,” 

which aims to facilitate 

partnerships at state and 

local levels by serving 

as an information 

clearinghouse about 

community-based 

supports, housing 

programs, and transition 

efforts to move people out of congregate 

settings.125 HHS partners include ACL, CMS, the 

Substance Abuse and Mental Health Services 

Administration, and the Office of the Assistant 

Secretary for Planning and Evaluation. Such 

an effort will succeed only with increased 

availability of affordable and accessible housing 

units—a critical but ongoing lack in the HCBS 

ecosystem.

III. Inequity in Data Collection 

Obscured Information on People 

with Disabilities

When disability advocates raised the alarm 

that people with disabilities must be prioritized 

in the vaccination roll-out, “insufficient data” 

was frequently cited as a reason to deny 

prioritization. Disability representation at all 

levels of federal and state decisions on data 

collection is an important strategy towards 

more equitable data collection, measure 

development, knowledge translation, and the 

development of data driven policies.126

While states were required to report deaths 

due to COVID-19 in nursing homes, they were 

not required to report deaths in low census 

settings, like group homes. Nor were states 

required to report infections and deaths of 

direct support providers 

in these settings. 

This has resulted in 

an impossible task to 

summarize casualties 

in these settings. We 

know even less about 

the impact of COVID-19 

on individuals receiving 

Medicaid HCBS in 

their homes. The 

Centers for Medicare and Medicaid Services 

(CMS) CMS reported COVID-19 related data 

for HCBS beneficiaries in 2021.127 In a survey 

to better understand state-level COVID-19 

data, few states posted data about cases and 

deaths in congregate care settings for people 

with intellectual disabilities.128 Among those 

who participated, states were inconsistent in 

collecting and reporting residential setting, race, 

While states were required to report 

deaths due to COVID-19 in nursing 

homes, they were not required to 

report deaths in low census settings, 

like group homes. Nor were states

required to report infections and 

deaths of direct support providers in 

these settings

Strengthening the HCBS Ecosystem 51
age, or health needs.129 Moreover, the standard 

death certificate form used in the United States 

does not capture the presence of disability.130

Although inconsistent, data began to drive 

pandemic responses in the summer of 2020 

as policymakers grappled with how to best 

spend infusions of federal funding to bolster a 

system in disarray. Targeted payment strategies 

for providers, modifications to service modality 

(i.e., adult day program transitioned to in-home 

services) and adjusting 

case-management from 

in-person to remote 

monitoring were among 

the strategies utilized 

across states during the pandemic. A national 

framework for data collection that includes people 

in all congregate settings, and interoperability 

across data systems, remains an unmet need 

which continues to hinder the ability of the Federal 

Government to fully understand the impacts on 

individuals who live in congregate settings and 

therefore undermines any effort to create a wellplanned, well-informed federal and state response. 

Without the gathering of this important data 

people with disabilities 

will continue to be left 

behind and treated 

inequitably.

The need for datadriven policies should 

drive decisions about 

data aggregation and 

bifurcation, or categorization, of data. In nursing 

facilities, “aging” and “disabled” are bifurcated 

without consideration that aging individuals are 

gradually developing disabilities. Some people are 

captured as “aging” in the data only because of 

their age and without consideration of disability 

status. Presumably nearly everyone residing in a 

nursing facility also has a disability. The bifurcation 

of data renders less valuable data for people with 

disabilities, the aging, and people who are part of 

both groups.

Racial, Ethnic, and Age Inequities in 

Data Collection

COVID-19 impacted poorer communities the 

hardest, no matter race or ethnicity. However, 

the studies identified 

for this report pointed 

out that significant racial 

and ethnic disparities 

in mortality rates and 

adverse outcomes from COVID-19 have been 

identified by researchers.131 Research by Shippee 

and colleagues (2020) predicted a worsening of 

racial and ethnic disparities in long-term services 

and supports, as well as HCBS.132

Between 1998 and 2008, the percentage of 

non-Hispanic white people decreased use of 

nursing homes while the population of people 

of color in nursing homes grew.133 A 2018 study 

by Fabius and colleagues found that Black HCBS 

users were more likely to 

be female and need more 

assistance with activities 

of daily living than White 

HCBS users.134 An 

analysis of secondary 

data also showed 

Black HCBS users 

were less likely to receive case management 

services, equipment, technology, environmental 

modification services, and nursing services. Black 

men had the lowest HCBS expenditures while 

White men had the highest.135,75 Future research 

is needed to understand cultural and social 

[T]he standard death certificate form 

used in the United States does not 

capture the presence of disability

A national framework for data 

collection that includes people 

in all congregate settings, and 

interoperability across data systems, 

remains an unmet need 

52 National Council on Disability
mechanisms, to close the gap in the provision of 

HCBS services between people of color and their 

white counterparts.

Intersectional 

inequities are also 

present in an analysis 

of HCBS outcomes and 

successful interventions. 

A 2019 study focused 

on the potential of 

HCBS waivers to reduce 

disparities in unmet 

need among children 

of color with autism 

spectrum disorder.136

States with 1115 waivers from the Federal 

Government offered expanded eligibility for 

HCBS, which differed in the “generosity” 

(i.e., the amount of services offered, number 

of participants allowed and duration). The 

study found that waivers with the highest 

“generosity” were 

most effective in closing 

disparities between 

Black and White children 

with autism.137 The 

State of Washington 

also used 1115 waivers 

to expand access 

to HCBS services 

to “pre-Medicaid” 

individuals to divert 

institutionalization.138

These findings provide 

important implications that the presence of 

a waiver alone, without consideration of the 

inequitable baseline, may not address racial, 

ethnic, age, or other inequities.

An analysis of secondary data 

also showed Black HCBS users 

were less likely to receive case 

management services, equipment, 

technology, environmental 

modification services, and nursing 

services. Black men had the lowest

HCBS expenditures while White 

men had the highest

Strengthening the HCBS Ecosystem 53
54 National Council on Disability
Chapter 4: Federal, State, and Private Efforts to 

Support Community Living During COVID-19

Appendix K, State Plan 

Amendments, and Medicaid Waivers

Most states implement their HCBS programs 

through a Medicaid authority called 1915(c) Home 

and Community-Based Waivers. Appendix K 

is a standalone appendix in the 1915(c) waiver 

application that can be utilized during an 

emergency for states to request a change or 

amendment to their approved 1915(c) waivers. It’s 

advantageous to utilize 

Appendix K because it 

is connected to a larger 

set of rules and practices 

that have already been 

negotiated as allowable or 

nonallowable within the 

1915(c) waivers during 

emergency situations. 

Appendix K is a template 

states can utilize during 

an emergency to tailor HCBS to meet unique 

needs that arise in an emergency. Changes 

made during an emergency can be temporary 

or become a permanent change to the state’s 

waiver, if permitted. Appendix K addressed several 

concerns during the pandemic, including access 

and eligibility to HCBS, provider qualifications, 

person-centered planning, and self-direction 

opportunities.139 Some of the same flexibilities 

afforded states under the Appendix K have 

been extended to states with HCBS under 1115 

authority via a similar application referred to as the 

Attachment K.

States used Appendix K to increase 

payments to HCBS providers to incentivize staff 

or compensate for additional risk. Some states 

requested rate increases for HCBS workers, 

including Direct Support Professionals, of up 

to 50%. Some states have provided “retainer” 

payments to providers 

while HCBS recipients 

are hospitalized or 

under quarantine. 

Typically, a provider 

couldn’t bill unless they 

provided services, but 

the retainer payments 

allowed providers to bill 

for services even though 

the HCBS recipient may have been hospitalized 

or in quarantine with COVID-19. This prevents a 

loss of income for the provider and ideally, the 

loss of a provider for the recipient.

Outside of these emergency options, 

states were also able to submit a State Plan 

Amendment (SPA) to CMS. While Appendix K 

uses the already-approved 1915(c) waiver to 

build upon, a SPA seeks to update the state plan 

[T]he retainer payments allowed 

providers to bill for services even 

though the HCBS recipient may have 

been hospitalized or in quarantine 

with COVID-19. This prevents a loss of

income for the provider and ideally, 

the loss of a provider for the recipient

Strengthening the HCBS Ecosystem 55
itself. When amending a state plan, the Medicaid 

statute allows CMS two ninety-day periods to 

review a state plan amendment submission. The 

Medicaid statute also allows for a retroactive 

approval date to the first date of the quarter the 

SPA was submitted, under certain conditions. In 

response to the public health emergency, CMS 

eased this process for 

states by releasing a SPA 

template in March 2020 

that made the process 

more standardized and 

added clarity to states 

about their options. 

States could integrate multiple HCBS state plan 

authorities, including the Self-Directed Personal 

Assistant Services (1915(j)) and Community 

First Choice (1915(k)) when requesting these 

temporary changes. States also used SPAs 

to suspend prior authorization requirements. 

Two additional authorities (1135 and 1115) also 

allowed states to suspend prior authorization 

requirements to ease administrative burdens 

during the emergency. States varied on whether 

the changes they made to their HCBS systems 

were temporary or permanent. From interviews 

and convening sessions, we heard that some 

states decided that even 

temporary changes were 

better made through a 

SPA than Appendix K. 

These decisions seemed largely tied to 

preferences of Medicaid leadership in states.

Appendix K and 1135 Waivers were impactful 

in addressing family caregivers and the direct 

care workforce shortage. The shortage of direct 

care workers results in family and friends filling 

the void. A 2021 HHS report valued annual unpaid 

caregiving by family and friends at $111,000 and 

even higher, around $192,600, for individuals who 

don’t also receive paid care.140

By April 2021, one year into the pandemic, 

39 states were using Appendix K waivers to 

pay family caregivers.141 The use of Appendix K 

has helped to prevent the transmission of 

COVID-19 by keeping people from needless 

institutionalization. 

Appendix K waivers 

enable states to “pay 

legally responsible 

relatives to provide care 

that is extraordinary and 

necessary” to prevent 

institutionalization. Some states expanded 

eligibility for family caregivers to meet minimum 

training requirements to be paid for the care 

they provide to family members with disabilities. 

Some states lowered the age limit to allow 

known family members who are 16 years of age 

and older to provide care and be paid. Appendix K 

waivers also provided families with PPE.

Likewise, “Section 1135” waivers were used 

to pay family caregivers. As of April 2021, 14 

states were using Section 1135 waivers to pay 

for personal care provided by legally responsible 

family caregivers.142 By keeping family members 

together and out of 

congregate settings, 

the use of Section 1135 

to pay for family 

caregivers, like Appendix K, has helped to prevent 

transmission of COVID-19 and help address the 

direct care workforce shortage. The reduced rate 

of childbearing by the baby boomer generation 

(people born between 1946 and 1964), which is 

now aging, increased divorce rates, and rising 

participation in the workforce by working-age 

women suggests less availability of unpaid, 

By April 2021, one year into the 

pandemic, 39 states were using 

Appendix K waivers to pay family 

caregivers

Appendix K waivers also provided 

families with PPE

56 National Council on Disability
family caregivers in the future,143 making it 

an important priority for CMS to make paid 

caregiving a permanent option for state Medicaid 

agencies, rather than part of a flexibility used in 

an emergency. Likewise, CMS should make paid 

family caregiving a requirement for state Medicaid 

agencies under 1915(c),1915(i), 1915(j), and 1915(k), 

rather than leaving this to states’ discretion.

American Rescue Plan Act

On March 11, 2021, President Biden signed 

the American Rescue Plan Act of 2021 (ARPA), 

which provided states with a temporary ten 

percentage point 

increase to the federal 

medical assistance 

percentage (FMAP) 

for certain HCBS 

expenditures from 

April 1, 2021, to March 

31, 2022.144 FMAPs are 

used in determining 

the amount of Federal 

payments to a State for 

medical services. States 

have an unprecedented 

opportunity to access 

additional HCBS funding through Section 9817 

of the ARPA through March 2024, to increase 

their capacity to offer services in compliant 

settings (particularly non-disability-specific 

residential settings), and to expand services 

that are truly integrated to support individual 

autonomy and community participation. This 

additional funding is an important opportunity 

for states to prioritize and implement changes 

aimed at addressing the most critical HCBS 

structural issues.145 States have varied vastly in 

their approach to spending these funds.

See Table B for HCBS Medicaid Authority 

and associated services eligible for the ARPA 

Section 9817 funding, which provided the 

temporary increased FMAP.

In addition to funding for services, ARPA 

helped states raise provider rates, recruit 

and train workers, and implement assistive 

technology programs to lessen needs for 

in-person supports.

The Money Follows the Person (MFP) 

program, which had been refunded through 

a series of short-term efforts, was extended 

for three years to 2023 by the Consolidated 

Appropriations Act of 

2021. Two important 

changes also altered 

eligibility criteria: 1) 

Individuals could qualify 

for MFP after a 60-day 

(instead of a 90-day) 

inpatient stay in a 

nursing home facility 

or institution; and 2) If 

a person received all or 

some of their care in a 

skilled nursing facility, 

they could count the 

days they received skilled rehabilitative or skilled 

nursing services to meet the 60-day threshold.146

These changes shortened the length of time 

people were identified by the MFP system as 

eligible and in need of support to transition out 

into the community. For some, however, these 

length-of-stay requirements were still too long. 

One convening session participant for this report 

recalled her time in a nursing home in Chicago in 

April 2020, “My room was adjacent to the back 

door and every day I could hear people rolling 

bodies out on stretchers. As my nurses would 

States have an unprecedented 

opportunity to access additional 

HCBS funding through Section 9817 

of the ARPA through March 2024, 

to increase their capacity to offer 

services in compliant settings ..

and to expand services that are truly 

integrated to support individual 

autonomy and community 

participation

Strengthening the HCBS Ecosystem 57
come and go, I’d see people being pushed out. 

I just wondered if I could get out of there before 

that would be me.”

Centers for Independent Living 

Assist in Transitioning People with 

Disabilities from Institutions

The COVID-19 Aid, Relief, and Economic 

Security Act (CARES Act) provided $85 million in 

supplemental funds to Centers for Independent 

Living (CILs) in April 2020.147 This one-time 

appropriation from Congress provided solutions 

for diversion, temporary homelessness, vaccine 

access, and nursing home transition, But few 

CILs seemed equipped to facilitate the transition 

of people with disabilities from congregate 

settings during the pandemic. The Atlantis 

Center, a CIL in Colorado, was an exception, 

demonstrating successful application of CARES 

Act funding to move people from nursing homes 

into hotel rooms for a period of quarantine while 

accessible housing was identified. Immediately 

upon leaving the nursing home, CIL staff ensured 

participants in the pilot program completed 

the steps necessary to receive HCBS waivers. 

The pilot provided participants a laptop and 

internet through the hotel. This access was 

paired with Atlantis Center’s staff support to 

make telehealth visits and complete the steps 

needed to fully transition into the community. 

HCBS Medicaid 

Authority Description

Home Health 

Care

Home health services are mandatory HCBS services. They include nursing

services, home health aides, medical supplies, and equipment. They may

include therapies

Personal Care 

Services

Personal care services (PCS) are considered optional. They include

assistance with daily activities, like bathing, meal preparation, and money 

management

Self-Directed 

Personal Care 

Services

Section 1915(j) of ARPA allows for self-direction of personal care services

The HCBS users can hire their own staff and direct their own services

Case 

Management

Case management assists HCBS users to gain access to medical, social, 

educational, and community services to address unmet needs

School-Based 

Services

Section 1905(1) includes school-based services, defined as medical 

assistance furnished as part of a child’s individualized education program 

(IEP)

Rehabilitative 

Services

Rehabilitation services include mental health and substance use disorder 

services as well as physical rehabilitation to restore function

Private Duty 

Nursing

Private duty nursing is an optional Medicaid state plan benefit. It supports

the provision of nursing care under the direction of a person’s physician and 

in a hospital, skilled nursing facility, or in a person’s home

Section 1915(c) Waiver authority found at section 1915 (c) gives states the option to 

offer LTSS in HCBS settings to individuals who would otherwise require 

institutional care. Eligible expenses include home accessibility modifications

(i.e., installing a wheelchair ramp or grab bars), first month’s rent, an

security deposits to attain accessible housing

58 National Council on Disability
Staffing a workforce to care for pilot participants 

was challenging but Atlantis partnered with 

organizations that provide wraparound services 

for people experiencing homelessness. Some 

of those individuals, who were also receiving 

employment support, were hired as caregivers 

for people residing in the hotel on a short-term 

basis after transitioning from the nursing home. 

Caregivers could be paired with participants to 

minimize transmission of the virus that occurs 

with caregiver’s care for multiple people.

The Atlantis Center tried to utilize FEMA 

Public Assistance Category B funds, which 

provides emergency protective measures 

during a Federally Declared Disaster to support 

the emergency need to relocate people with 

disabilities from nursing homes to the community 

in the midst of the pandemic but were 

unsuccessful. FEMA Category B funds reimburse 

up to 75% of expenses for shelter and temporary 

housing during an emergency. It can also pay 

for emergency equipment, PPE, staff training, 

and other expenses that are listed in a state’s 

emergency plan.148 Atlantis Center pilot program 

staff explained, “Local partners . . . were already 

firmly set on the fact that they were only going 

to contract with homeless service providers 

to utilize FEMA funds during the pandemic.”149

Some of the people with disabilities who 

contacted the Atlantis Center because they were 

in need of urgent transition from a dangerous 

congregate setting were living in places originally 

created from FEMA funding.

Another Center for Independent Living, Roads 

to Freedom in North Central Pennsylvania (the 

CIL), successfully accessed FEMA Category B 

Strengthening the HCBS Ecosystem 59
funds. On April 3, 2020, FEMA approved 

Category B funding for non-congregate shelters in 

Pennsylvania, but limited populations who could 

be served to people who were unhoused, first 

responders, and healthcare workers. On May 13, 

2020, Pennsylvania disability advocates requested 

state and county officials to consider people with 

disability as a population in need of emergency 

transition from nursing homes to hotels where 

they were could receive safer, individualized care. 

As the death toll of people with disabilities in 

congregate settings rose, the CIL sent dozens 

of emails and initiated several meetings with 

county, state, and federal officials to map a 

way to utilize FEMAfunding for its intended 

purposes to “provide 

assistance for the rescue, 

evaluation, care, shelter, 

and other essential 

needs of affected 

human populations.150” 

The CIL continued to 

use Nursing Home 

Transition funds to emergently transition 54 

people from nursing facilities in 2020 during 

the pandemic. Six individuals died from COVID 

before their transitions could be completed. In 

late 2021, The Road to Freedom received its first 

FEMA reimbursement, the result of a lengthy 

and complicated county-by-county process. 

The Road to Freedom’s pilot program to utilize 

FEMA funding for emergency relocation was 

an interesting and innovative approach but it 

faced multiple policy and procedural barriers to 

implementation. While the Atlantis Center and The 

Road to Freedom successfully accessed Category 

B funding, other CILs could not access those 

funds as there was confusion over CILs’ eligibility 

as “private non-profits” that could receive that 

funding. Individuals interviewed for this report 

informed NCD that the FEMA funding that was 

received to reimburse CILs was delayed and 

was insufficient to cover the costs of the work 

completed by the CILs.

To address the complexity and confusion 

regarding the availability of FEMA funds that 

can be used to assist in relocating people with 

disabilities during a federally declared disaster 

from congregate to non-congregate settings, 

in 2022, FEMA and NCD established a working 

group on federal disaster assistance for people 

with disabilities. The group is comprised of 

federal agencies 

and aims to create a 

document for disability 

stakeholders describing 

the funds available, and 

how to access them, 

from FEMA and other 

federal sources that can 

be used for this purpose.

Hospital Discharge Planning 

Partnership to Support Community 

Living

While CIL-based programs assisted the transition 

from nursing home to community, other 

advocates focused on changing the hospital 

discharge process to avoid moving people from 

a hospital into another congregate facility. Many 

people with disabilities entered a congregate 

care facility during or before the onset of the 

COVID-19 pandemic from a hospital discharge. 

Safe hospital discharge planning prioritizes 

community living for those that do not need 

acute, hospital-level medical care but barriers, like 

housing and finding caregivers, too often result 

The Road to Freedom’s pilot 

program to utilize FEMA funding 

for emergency relocation was 

an interesting and innovative 

approach but it faced multiple 

policy and procedural barriers to 

implementation

60 National Council on Disability
in discharge from one congregate setting (i.e., a 

hospital) to another (i.e., a nursing home).

Before a person with a disability leaves 

a hospital, their level of care is assessed. 

How, when, and by whom this assessment 

is conducted is not transparent and highly 

variable. Even people who make or have too 

much money to meet 

Medicaid’s income 

eligibility requirements 

are often still unable to 

pay for skilled nursing 

care because it is very 

expensive. Higher skilled 

care is more widely 

available in one’s home. For at least some people, 

current restrictions on setting of care are the only 

reason they are forced to live in a congregate 

care facility to receive the care they need rather 

than at home.

If a person’s level of care is assessed to be 

compatible for community living, it far from 

guarantees a transition 

to the home. Referrals 

to services that support 

transitions often come 

too late. An on-site 

presence is needed from 

transition coordinators 

who are in hospitals; 

this best practice was 

significantly reduced 

during peaks of COVID-19, when coordinators 

were less likely to be deemed essential staff 

than those with hands-on healthcare roles. 

Social determinants of health—Economic 

Stability; Education Access and Quality; Health 

Care Access and Quality; Neighborhood and 

Built Environment; and Social and Community 

Context—are integral factors in successful 

transitions but perhaps more so in reduction of 

re-institutionalization, a return to the congregate 

setting after an attempted discharge to 

community. Re-institutionalization is both costly 

financially and dangerous to the health of people 

with disabilities.

The Hospital-to-Home 

program in Colorado 

Springs, Colorado has 

dismantled the pipeline 

from hospital to nursing 

home through a private 

partnership between the 

University of Colorado 

Health system and The Independence Center 

(local CIL).151 When a person with a disability is 

identified as ready to go home but expecting 

unmet needs, like meals, home health care, and 

housekeeping, interagency case management 

intervenes to connect people with resources 

and low-cost services. The Hospital-to-Home 

program acknowledges 

the risk of long-term 

institutionalization if 

people discharge from 

the hospital to a skilled 

nursing facility, so it 

intervenes to lessen the 

likelihood of placement 

in a congregate 

facility. Promising pilot 

programs, such as the Roads to Freedom, 

Atlantis Center, and the Hospital-to-Home 

program, offer glimpses of potential strategies 

that, put to scale, could divert more people 

from congregate care facilities and move those 

already living in these facilities out into the 

community.

... [O]ther advocates focused 

changing the hospital discharge 

process to avoid moving people 

from a hospital into another 

congregate facility

Social determinants of health 

are integral factors in successful 

transitions but perhaps more so in 

reduction of re-institutionalization, 

a return to the congregate setting 

after an attempted discharge to 

community

Strengthening the HCBS Ecosystem 61
62 National Council on Disability
Lynn’s Story

Lynn is a 35- year- old White woman with cerebral 

palsy residing in a Cincinnati, Ohio, nursing 

home for people with neurological disabilities. 

She has a master’s degree and volunteers for 

several nonprofit organizations, including her 

state’s protection and advocacy board. Lynn lived 

in a dorm during college and then in her own 

apartment, both with the assistance of direct 

support providers. Around approximately 2017, 

she found it untenable to find and retain providers

to assist her with daily living, including toileting, 

preparing food, and bathing. She worked with 

case managers from her county board of 

developmental disabilities and even nonprofits 

specializing in finding and matching providers 

with waiver recipients. The task of hiring, training, 

and then losing staff was taking up most of 

Lynn’s time. She was frequently left stranded in 

bed or without the option to toilet for multiple 

hours at a time. Her mother frequently made 

unplanned trips to provide backup assistance. In 

2018, Lynn made the difficult decision to move 

back into her mother’s home.

With most of the caregiving responsibilities 

now the responsibility of Lynn’s mother, her own 

needs as an aging adult were increasingly less 

compatible with lifting and transferring Lynn. 

Both Lynn and her mother worried about safety 

if either of them should be hurt or become ill 

and need more assistance. Lynn deeply valued 

her life in the community but as she describes, 

“It seemed clear my needs couldn’t be met in 

the community despite promises of waivers. 

I realized that it was likely I was going to end 

up in a nursing home emergently so I thought 

it would be a better option to choose a facility 

that best met my needs.” Lynn researched and 

visited facilities. She prioritized settings near bus 

lines with hopes she could still remain active in 

her community. In late 2018, she moved into a 

nursing home with hopes for temporary reprieve 

while she, “could figure out what seemed like a 

maze of supports and strategies to find and keep 

personal assistants.”

In 2019, Lynn applied and was accepted into 

a competitive advocacy training program. She 

arranged to take the bus from her facility to the 

training site and back each day. Lynn had noted 

the importance of being in the community in 

all her person- centered planning at the nursing 

facility, but she still faced significant barriers to 

participation in this program. The length of her 

training day was adjusted to ensure Lynn was 

not outside of the facility for more than 8 hours 

(a CMS regulation for nursing home residents). 

As such, Lynn also had to forgo trips with her 

training cohort because extended absences 

Chapter 5: Analyses of Two Women with Disabilities 

Institutionalized During the COVID-19 Pandemic

Strengthening the HCBS Ecosystem 63
from the nursing facility were limited and Lynn 

preferred to save them to spend holidays with 

her mom in her home.

With the onset of COVID-19, the nursing 

facility was placed on full lockdown for more than 

10 months. Lynn could not leave her room. Her 

mother was not permitted to visit. She reports 

that she was fortunate to be well-equipped with 

technology, like an iPad and computer, to stay 

connected to the outside world, “but most other 

residents were not so lucky.” Fearing for her 

safety, Lynn tried to expedite her transition from 

the congregate setting back into the community 

She felt renewed hope that she would be able to 

find direct support professionals to help her upon 

reading about federal investments into HCBS. 

She applied for housing 

vouchers. Upon the 

initiation of our interview 

for this root cause 

analysis in August 2021, 

Lynn was confident she 

would be moving into 

an accessible apartment 

by September. She then faced a number of 

frustrating challenges. HUD paperwork still 

required paper-based completion, which was 

slowed or impossible due to ongoing COVID-19 

lockdowns in nursing facilities. At several points, 

HUD offices were closed but still required paper 

forms that could only be submitted by mail. 

Lynn reports that her forms were lost more than 

once. Systems collided as she could not apply for 

services for an address she did not yet occupy, 

but she could not move until services were in 

place. Lynn estimates she’s spent more than 

30 hours making phone calls, sending emails, 

and largely handling her own case management. 

In May of 2022, more than two years after she 

began her efforts to move out of the facility, Lynn 

moved into her own apartment in the community. 

She continues to struggle in finding direct 

support professionals. After just two weeks in 

her new apartment, a newly trained caregiver 

dropped Lynn during a transfer. She sustained 

two broken femurs that required surgery. At the 

time of this writing, Lynn was once again fearful 

she would be discharged back to a congregate 

care facility rather than her home in the 

community.

Debra’s Story

Debra is a 42-year-old Black woman who has 

been trying to transition to the community from a 

Chicago nursing facility for several years. In 2003, 

she was injured during 

a violent crime. Her 

recovery was complicated 

by an infection, so 

she was admitted to 

a step-down facility, 

which she describes 

as between a hospital 

and a nursing home, to receive treatment for 

her infection. Without warning, the step-down 

facility informed her she would be discharged to 

a nursing facility. Debra and her family wanted to 

research facilities to determine the best fit, but 

they were told there was not time, and she would 

be discharged immediately to the facility selected 

by the hospital. This was Debra’s first admission 

to a nursing facility. For the next several years, 

she would rotate between hospitals and various 

congregate settings, including several rehab 

facilities and nursing homes.

In March 2020, Debra lived in a nursing home, 

but she wanted to live in her community. With 

the onset of COVID-19 conditions in her nursing 

Systems collided as she could not 

apply for services for an address 

she did not yet occupy, but she 

could not move until services were 

in place

64 National Council on Disability
home deteriorated further. She states, “At first, 

they (the nursing home administrators) denied 

COVID and described the nursing home as 

mask-free.” When Debra asked staff members to 

wear a mask while in her room, she was told the 

facility did not have enough PPE. Debra was not 

permitted to leave her 

room, and no one could 

visit her for more than 

12 months.

Like Lynn, Debra 

described her reliance 

on her own technology, including her own hot 

spot, to stay minimally connected to the outside 

world. Debra said, “The nursing home Wi-Fi is 

unreliable. If I didn’t have my own Wi-Fi, my own 

phone, and my own laptop, I’d be stuck.” Even 

when visitation became available, her sister 

was turned down for several reasons, like failing 

to show identification or mixed messages on 

whether testing, proof of vaccination, or both 

were needed at the time of visit.

Debra explained her own initial confusion 

with the nursing facility, “I used to believe that 

a setting like this would 

provide care, like therapy 

and nursing care. I can 

barely get someone to 

assist with toileting and 

sometimes have to wait 

hours for that due to staff shortages.” In her 

effort to transition back into the community, 

Debra has enlisted a wide range of supports. 

She works with a local nonprofit called Equip 

for Equality, her state’s Ombudsman Program, 

and a national group that rescues and relocates 

Debra was not permitted to leave 

her room, and no one could visit her 

for more than 12 months

Strengthening the HCBS Ecosystem 65
people with disabilities from nursing homes into 

the community. Prior to the pandemic, Debra 

even filed a court case to appeal a medical 

decision made against her will. The judge came 

into the facility to render a decision and ruled 

in her favor. Debra is awaiting availability of an 

accessible housing unit and establishment of 

in-home nursing care. She is cautiously hopeful 

that someday she will be able to move back 

into the community but sees no immediate 

opportunity for such a transition.

Lynn and Debra’s stories include barriers 

to community living echoed by convening 

session and interview participants. They are 

far from alone. A lack of reliable caregivers, 

poor hospital discharge planning, and a lack of 

quality in care received traps countless people 

with disabilities in dangerous living situations 

that could be improved with fortification of 

our HCBS system. Elements worsened by 

COVID-19 have added to these and other longstanding issues.

66 National Council on Disability
HCBS is an ecosystem. Each part of that 

ecosystem must be working to full 

capacity to meet the needs of throughout 

the country now, but also in the future where 

the continually increasing amount of people 

both disabled and elderly/disabled will grow and 

require appropriate community living options 

with necessary supports. The death toll of 

institutionalized people, both young and old, during 

COVID-19 clarified that our institutional bias is a 

failed model and our lack of investment in the 

various parts of the HCBS ecosystem contributed 

to that death toll and has 

prevented hundreds of 

thousands of people with 

disabilities on waiting 

lists from transitioning to 

community living. NCD 

proposes a plan that will establish a new paradigm: 

The Community Living Bias. Importantly, each of 

the actions should be addressed simultaneously 

to ensure that each part of the ecosystem is 

operating in a manner that is fully responsive to the 

other components of the system.

Remove the Institutional Bias in 

Medicaid and Increase Funding for 

HCBS

The continued institutionalization bias created 

by the requirement that Medicaid programs 

pay for nursing homes but not HCBS, makes 

it impossible to achieve the ADA’s integration 

mandate. It is still too easy to institutionalize a 

person with a disability, younger or older, who 

has needs for direct care.

Federal legislation is needed to:

■ increase funding for HCBS;

■ create Community Living Bias by requiring 

Medicaid to cover a minimum, standard, set 

of HCBS services in every state;

■ limit Medicaid program’s ability to fund 

nursing home care;

■ streamline HCBS 

waivers; and

■ require states to 

maintain or increase 

HCBS with strong “maintenance of effort” 

(MOE) provisions.

Build a Robust Direct Care Workforce

The lack of direct care workers has been 

longstanding and during the COVID-19 pandemic 

reached a “911” degree of urgency. Until we 

can recruit and retain a robust workforce of 

home health aides and personal care attendants 

to help people with disabilities live in their 

homes, the myriad of problems and dangers of 

congregate living for people with disabilities will 

Chapter 6: Six Focus Areas That Require Immediate 

and Simultaneous Change for an HCBS System That 

Meets the Needs of the Nation

NCD proposes a plan that will 

establish a new paradigm: The 

Community Living Bias.

Strengthening the HCBS Ecosystem 67
never be resolved. Rebuilding and expanding the 

workforce will take more than increased wages, 

however. Incentivizing entry into and elevating 

this work to a “profession” is critical to achieving 

this goal, though, for example, making direct care 

a Schedule A profession; creating apprenticeships 

and training opportunities; offering a career 

path and benefits such as health insurance, and 

requiring hazard pay and paid leave.

Increase the Supply of Accessible 

and Affordable Housing

We cannot meet the nation’s need for community 

living and achieve an HCBS system sufficient to 

meet the needs of the hundreds of thousands 

waiting to transfer from institutions to the 

community if there without more affordable and 

accessible housing opportunities. We have no 

more time to lose—we must increase the supply 

of accessible and affordable housing. Part of 

this must be robust, proactive enforcement by 

HUD during design and construction phases of 

the development of housing built with federal 

financial assistance, and DOJ willingness to sue 

entities that violate federal requirements. The 

struggle for low-income people with disabilities 

to find housing is often impossible or delayed for 

years due to a lack of housing opportunities.

Improve Hospital Discharge Planning 

to Prevent Institutionalization or 

Reinstitutionalization

As described in NCD’s 2019 report on Ending 

Institutionalization of People with Disabilities 

During and After Disasters, people with 

disabilities are at heightened risk of entering 

a congregate setting during and after a public 

health emergency, like the COVID-19 pandemic. 

Once they have entered a congregate facility, 

including a hospital, it can be nearly impossible 

to get back out. Diversion or prevention of 

institutionalization is a critical priority. Hospital 

systems should approach discharge planning 

with home placement at the primary goal to 

prevent the unnecessary institutionalization of 

people with disabilities and should partner with 

independent living centers and state Medicaid 

HCBS to conduct discharge planning that 

prioritizes self-direction and case management 

support to navigate the complex web of services 

needed to solidify a safe and sustainable 

transition to the community. Joint efforts like that 

of the University of Colorado Health System and 

the Center for independent Living, described in 

this report, to provide the necessary supports for 

people with disabilities to return to their homes 

after hospital discharge, should be replicated by 

health systems across the nation.152

Maintain COVID-19 Flexibilities Such 

as Appendix K and Section 1135 

Waivers

The long existent direct care workforce shortage 

which grew worse during the pandemic because 

of the extreme contagiousness of the virus, 

left many people with disabilities who were 

living in the community without home health 

and personal care aids needed to remain 

uninstitutionalized. Unpaid family caregivers have 

been a constant part of the HCBS ecosystem, 

keeping loved ones cared for but not being 

paid to do so, causing impoverishment and a 

lack of respite, among other things. Medicaid 

authorities, such as state plan services and 

waivers, were utilized to pay family caregivers, 

preventing further spread of the virus, alleviating 

the direct care workforce crisis, and helping 

families maintain some income. These flexibilities 

68 National Council on Disability
should remain permanently—family caregivers 

should be paid, and CMS should make this a 

permanent to support the nation’s need for a 

strong HCBS system.

Improve Data Collection on 

Residents in All Congregate Settings

Every life lost in a congregate setting was 

valuable, but failures in data collection about 

people with disabilities in all congregate settings 

means that we will never know the accurate 

death count of people with disabilities or their 

caregivers who died from COVID-19 in these 

settings. The failure to collect data on people with 

disabilities in all congregate settings is part of a 

larger failure by government to collect data on 

people with disabilities in a manner comparable 

to other populations and continues the harms 

stemming from inequitable treatment and 

devaluation. In order to plan interventions and 

understand the populations residing in congregate 

settings, consistent data gathering by the federal 

government should be done across all congregate 

settings, for all ages and disability types.

Strengthening the HCBS Ecosystem 69
70 National Council on Disability
Recommendations for Implementation

Congress

■ Enact legislation that ends the institutional bias in Medicaid by make HCBS a mandatory 

Medicaid service with a minimum, standard set of services under 1905(a) and create a 

new, single, HCBS authority to alleviate the complexity and administrative costs associated 

with so many different programs. The legislation should: align financial eligibility pathways 

and replace enrollment caps with functional eligibility criteria; make Medicaid portable

across state lines.

■ Require CMS to make permanent the authority of states to pay family caregivers through 

Appendix K and 1135 Waivers. This saved lives and avoided institutionalization of people 

with disabilities during the COVID-19 public health emergency and was responsive to the 

direct care workforce shortage.

■ Enact legislation that includes significant funding for Home and Community Based 

Services similar to the proposed funding in the Build Back Better Act which proposed 

$150 billion to HCBS, and increased pay for the direct care workforce, to allow individuals 

to live in the community.

■ Pass the Fair Housing Improvement Act of 2022—A bill to amend the Fair Housing Act 

to prohibit discrimination based on source of income, veteran status, or military status, 

to provide more housing opportunities people with disabilities, enabling more people to 

transition from institutionalized settings to the community, and supporting the nation’s 

HCBS system.

■ With significant input from all stakeholders, enact legislation to require private health 

insurers and health plans to over a minimum set of defined-HCBS services.

(continued)

Strengthening the HCBS Ecosystem 71
Congress: continued

■ Congress should require the Department of Labor to immediately devise a plan to address 

the direct care workforce labor shortage by, for example, creating apprenticeship programs 

to incentivize individuals to become direct care workers; setting and raising standards for 

pay, benefits, and working conditions.

■ Congress should enact legislation requiring the Department of Citizenship and Immigration 

Services to establish a new Employment-Based Immigration Visa with a specific 

preference for direct care workers.

■ Congress should require HUD to proactively monitor new housing units constructed with 

HUD funding to ensure that the required percentage of accessible units required under 

federal law are actually constructed and constructed in accordance with federal accessibility 

standards. This is necessary to increasing the desperately needed affordable, accessible 

housing supply by avoiding the prolonged process of retrofitting units and litigation to correct 

the failure to construct, or wrongly constructed, units.

■ To enable HUD to increase its ability to monitor compliance with newly constructed 

housing, substantially altered housing, housing with other alterations, and program 

accessibility, Congress should increase HUD’s appropriation to fund at least one 

compliance specialist in each of HUD’s ten regional offices. These staff would have 

expertise in construction and federal regulations on housing accessibility and proactively 

monitor federally financed housing construction in the ten federal regions.

■ To enable HUD to broaden its efforts at compliance with both Fair Housing Act Accessibility 

Standards and Section 504 requirements, Congress should increase HUD’s appropriation 

to fund a pilot program to engage local planning and codes compliance departments across 

the United States in identifying potential federal accessibility issues in new construction, 

substantial alterations, housing with other alterations, and existing housing. This can be 

done by funding contracts and cooperative agreements that include training localities in 

federal accessibility standards and requirements.

■ Congress should assist HUD in increasing the stock of accessible housing by increasing its 

appropriation to fund a Home Modification Fund Program or Home Modification Voucher to 

assist people with disabilities to make modifications to their existing homes. This will help 

people avoid institutionalization if they become disabled and live in an inaccessible home 

and open housing opportunities for people with disabilities who are transitioning out of 

institutions that require accessible housing.

72 National Council on Disability
Congress: continued

■ Congress should pass visitability legislation that requires developers to offer home buyers 

visitability (barrier-free access to first floor) options in all newly constructed homes.

■ Pass the REAADI for Disasters Act and the Disasters Relief Medicaid Act (DRMA). Both 

bills require the inclusion of people with disabilities in emergency preparedness and 

response. DRMA aims to ensure individuals who live in disaster areas maintain access to 

Medicaid services, including Home and Community-Based services, if they are forced to 

relocate to another state.

■ Congress should appropriate funds each year to the HHS Administration for Community 

Living (ACL) to fund nursing home transition services provided by Centers for Independent 

Living (CILs).

■ Congress should appropriate funds each year to the ACL to fund emergency management 

services provided to people with disabilities by CILs.

■ Congress should commission a special bi-partisan committee to investigate the local, state, 

and federal governmental failures during the pandemic that lead to the disproportionate 

deaths of those residing in congregate settings.

■ Congress should require HHS to work with state, local, Tribal, and territorial health departments 

to track and report the health and health status and outcomes of people in congregate settings.

U.S. Department of Health and Human Services (HHS)

National Institutes of Health (NIH)

■ Ensure people with disabilities in congregate settings continue to receive prioritized access 

to testing and early vaccination during any similar health emergency, including additional 

doses and boosters.

HHS Office for Civil Rights

■ Clarify that people with disabilities in all congregate settings have the right to receive care 

from vaccinated providers.

Strengthening the HCBS Ecosystem 73
Centers for Medicare and Medicaid Services (CMS)

■ Standardize quality assurance systems for smaller census settings prioritized for transition 

from larger institutions to community living. Pilot models that expedite this transition and 

sustainable living in the community.

■ Work with the Administration on Community Living to lead federal alignment in defining 

long-term settings to include the full range of congregate settings, including small census 

groups.

■ Work with the Administration on Community Living to identify which COVID-19 measures 

merit permanent inclusion in state Medicaid plans based on their positive impact on 

community living. The Appendix K Waiver allowing paid family caregivers was instrumental 

in saving lives by keeping people with disabilities in their homes and should be made 

permanent for this reason and because it is a response to the direct care workforce 

shortage.

■ To reduce the potential for Home Health Agencies to avoid caring for high-cost 

beneficiaries, CMS should correct for any unintended consequences caused by payment 

and quality incentives that discourage serving Medicare beneficiaries who require multiple 

episodes of care, are admitted from community settings, or have a limited potential to 

improve. This includes ensuring that risk stratification methodologies adequately capture 

the costs of providing care, particularly for those with chronic illness or cognitive deficits, 

and reflect services provided by home health aides and clinical social workers.

■ In conjunction with the Department of Labor, or separately, establish a public private 

partnership that matches federal dollars with productive private capital to increase funding 

for HCBS and increase wages and benefits for direct care workers.

Department of Labor (DOL)

■ Designate home health aides and direct support providers as a “Schedule A” shortage 

Occupation.

■ Devise a plan to address the direct care workforce labor shortage by, for example, creating 

apprenticeship programs to incentivize individuals to become direct care workers; setting 

and raising standards for pay, benefits, and working conditions.

74 National Council on Disability
Department of Labor (DOL): continued

■ Establish, with the Department of Education, grants for community colleges to provide 

career training/courses on direct service to address the current and growing need for direct 

service workers.

■ In conjunction with the Centers for Medicare and Medicaid Services (CMS), or separately, 

establish a public private partnership that matches federal dollars with productive private 

capital to increase funding for HCBS and increase wages and benefits for direct care workers.

■ Collect data on home health care workers to track worker trends over time and help policy 

makers identify areas for improvement of the profession and career development.

Department of Citizenship and Immigration Services

■ Create a new Employment-Based Immigration Visa with a specific preference for direct 

care workers and work with the Department of Labor and the Centers for Medicare and 

Medicaid Services to inform employers, including home health agencies nationally.

U.S. Department of Housing and Urban Development (HUD)

■ As a part of federal implementation of Section 504, HUD is obligated to collect assurances 

of compliance with Section 504, including the accessibility requirements. HUD should 

undertake a review of its various grant programs to ensure that it is collecting appropriate 

programmatic and construction assurances and provide guidance to grantees to ensure 

they understand what this means for new construction, substantial alteration, other 

alterations, and program access, as well as obligations related to nondiscrimination, 

reasonable accommodations, effective communication, among others.

■ To decrease the multi-year wait for affordable, accessible housing, HUD should amend 

its Section 504 regulation to increase the percentage of fully accessible housing units 

required in multifamily housing under its Section 504 regulations from 7% (5% mobility 

disability and 2% hearing and vision disability) to 25%, with at least 20% mobility units 

to accommodate the existing disabled population in need of housing and the growing 

population of elderly disabled.

■ To increase the national supply of affordable, accessible housing units, HUD should amend 

Section 8.56 of its Section 504 regulations to require HUD to conduct compliance checks during 

the construction phase to ensure that accessible units are being constructed. This amendment 

would require HUD to conduct such checks proactively without need for an instigating event.

(continued)

Strengthening the HCBS Ecosystem 75
Department of Labor (DOL): continued

■ To increase transparency and assist people with disabilities to locate accessible housing 

units, HUD should amend its Section 504 regulations to require recipients of HUD financial 

assistance to maintain a publicly available list of accessible units with a description of their 

accessibility features.

■ To increase its ability to monitor compliance with newly constructed housing, substantially 

altered housing, housing with other alterations, and program accessibility, HUD should 

request an increased appropriation to fund at least ten compliance specialists to staff 

each regional HUD office. These staff would have expertise in construction and federal 

regulations on housing accessibility and proactively monitor federally financed housing 

construction in the ten federal regions.

■ HUD should request an increase in its appropriation to broaden its efforts at compliance 

with both Fair Housing Act Accessibility Standards and Section 504 requirements by 

piloting a program to enlist local planning and codes compliance departments across the 

United States in identifying potential federal accessibility issues in new construction, 

substantial alterations, housing with other alterations, and existing housing. This can be 

done by funding contracts and cooperative agreements that include training localities in 

federal accessibility standards and requirements.

■ HUD should request an increase in its appropriation to increase the stock of affordable, 

accessible housing by establishing a Home Modification Fund program or voucher to assist 

people with disabilities to make modifications to their existing homes. This will help people 

with disabilities avoid institutionalization and open housing opportunities for people with 

disabilities who are transitioning out of institutions, and who require accessible housing.

■ HUD should increase number of vouchers specifically designated for people with 

disabilities transitioning from institutions to support the ADA integration mandate and the 

Supreme Court’s Olmstead decision.

U.S. Department of Homeland Security

Federal Emergency Management Agency (FEMA)

■ Recognize people with disabilities in congregate settings or at-risk of institutionalization as 

a population of comparable risk to people who are currently homeless.

76 National Council on Disability
U.S. Department of Homeland Security: continued

■ Require that all emergency shelters in the United States that receive FEMA funding, are 

fully accessible to people with disabilities, to avoid institutionalization after disasters or 

public health emergencies.

■ Engage with disability stakeholders at multiple levels before, during, and after disasters like 

the COVID-19 pandemic.

■ Provide guidance, training, and oversight to State, Local, Tribal, and Territorial entities 

(SLTTs) regarding the implementation of “Addendum: Delivering Personal Assistance 

Services in Congregate and Non-Congregate Sheltering.”

■ Amend regulations to recognize disaster impacted CILs in the Public Assistance Program 

and Policy Guide as private non-profits, eligible for reimbursement,

■ Clarify the process for disability organization to be funded and reimbursed by SLTTs in the 

Public Assistance Category B Emergency Protective Measures reimbursement process.

Local and State Governments

■ Create a home modification fund for residents who wish to remain in their homes but 

are at risk of institutionalization due to disability/illness that makes their current home 

inaccessible, or those in institutions that are transitioning to the community and need 

accessibility features to do so. Advertise this broadly to include Independent Living Centers 

and Medicaid Agencies.

■ Provide training on the Fair Housing Accessibility Guidelines and HUD Section 504 

regulation for all reviewers of plans for multifamily construction and inspectors of new 

multifamily construction, to assist in early identification of violations.

■ Local governments, especially cities, can utilize models like Berkeley, California to fund 

back-up attendant care services, accessible transportation, and wheelchair repair services 

with city tax revenue. These services are critical for those living in the community and 

increase opportunities for people with disabilities to travel to the area.

(continued)

Strengthening the HCBS Ecosystem 77
Local and State Governments: continued

■ Restructure state departments for aging and disability to streamline state and federal 

funding for long-term services and supports in a newly created Department of Community 

Living (DCL). This new department would support community-living for people with 

disabilities and aging populations, regardless of income and need. Structural reorganization 

should focus on coordinated, integrated HCBS delivery that is not siloed by age.

■ Utilize 1115 waivers (approved by CMS in 2017) to expand access to HCBS services to 

divert people with disabilities considered “pre-Medicaid” from institutional settings.

Hospitals and Hospital Systems

■ Hospitals and hospital systems should improve discharge planning to consider community 

living options first and should create partnerships with independent living centers like 

the private partnership between the University of Colorado Health system and The 

Independence Center (local CIL)153 and state Medicaid HCBS staff, to leverage their 

resources to obtain the supports necessary return home or to community settings.

78 National Council on Disability
Endnotes

1 Presidential COVID-19 Health Equity Task Force, “Snapshot: Congregate Settings,” www.bit.ly/35tBj7i.

2 Scott D. Landes, Margaret A. Turk, Margaret K. Formica, Katherine E. McDonald, and J. Dalton Stevens, 

“COVID-19 Outcomes among People with Intellectual and Developmental Disability Living in Residential 

Group Homes in New York State,” Disability and Health Journal 13, no. 4 (2020): 100969.

3 J. Zuckerman, “Nursing Homes Spend at Least $6 Million on Ohio Politics in Five Years,” Ohio Capital Journal, 

April 19, 2021, https://ohiocapitaljournal.com/2021/04/19/nursing-homes-spent-at-least-6-million-on-ohio

-politics-in-five-years/.

4 M. A. Paanowski, “Ohio Nursing Home Must Defend Covid Death Suit in State Court,” Bloomberg Law, 

December 2021, https://news.bloomberglaw.com/coronavirus/ohio-nursing-home-must-defend-covid-death

-suit-in-state-court.

5 See, e.g., https://apnews.com/article/new-york-andrew-cuomo-us-news-coronavirus-pandemic-nursing-homes

-512cae0abb55a55f375b3192f2cdd6b5; https://republicans-energycommerce.house.gov/news/governor

-cuomo-cant-pass-the-buck-on-his-deadly-mistakes/; https://blog.petrieflom.law.harvard.edu/2020/09/09

/covid19-nursing-homes-new-york/.

6 https://skillednursingnews.com/wp-content/uploads/sites/4/2020/03/DOH_COVID19__NHAdmissions

Readmissions__032520_1585166684475_0.pdf.

7 https://ohiocapitaljournal.com/2021/04/19/nursing-homes-spent-at-least-6-million-on-ohio-politics-in-five

-years/ and https://www.citybeat.com/news/nursing-homes-spent-at-least-6-million-on-ohio-politics-in-five

-years-12267274.

8 https://debbiedingell.house.gov/uploadedfiles/hcbs_access_act.pdf.

9 https://www.medicaid.gov/resources-for-states/disaster-response-toolkit/home-community-based-services

-public-health-emergencies/emergency-preparedness-and-response-for-home-and-community-based-hcbs

-1915c-waivers/index.html#:~:text=Appendix%20K%20is%20a%20standalone,to%20respond%20

to%20an%20emergency.; also see National Academy for State Health Policy, “States Use Appendix K and 

Emergency Waivers to Support Home- and Community-Based Services in Response to COVID-19,” updated 

May 22, 2022, https://www.nashp.org/states-use-appendix-k-waivers-to-support-home-and-community

-based-services-in-response-to-covid-19/.

10 National Academy for State Health Policy, “States Use Appendix K and Emergency Waivers to Support Homeand Community-Based Services in Response to COVID-19,” updated May 22, 2022, https://www.nashp.org

/states-use-appendix-k-waivers-to-support-home-and-community-based-services-in-response-to-covid-19/.

11 Hannah R. Abrams, Lacey Loomer, Ashvin Gandhi, and David C. Grabowski, “Characteristics of US Nursing 

Homes with COVID-19 Cases,” Journal of the American Geriatrics Society 68, no. 8 (2020): 1653–56.

12 Thach, Nga T., and Joshua M. Wiener. “An overview of long-term services and supports and medicaid.” Final 

Report (2018).

13 Hado, Edem, and Harriet Komisar. Long-Term Services and Supports. Washington, DC: AARP Public Policy 

Institute, August 2019. https://doi.org/10.26419/ppi.00079.001

14 O’Shaughnessy, Carol. V. (2014). The Basics: National Spending for Long-Term Services and Supports (LTSS), 

2012. Washington, DC: The George Washington University.

Strengthening the HCBS Ecosystem 79
15 Harrell, Rodney, Jana Lynott, Shannon Guzman, and Cheryl Lampkin. “What is livable? Community 

preferences of older adults.” AARP Public Policy Institute. http://www.aarp.org/content/dam/aarp/research

/public_policy_institute/liv_com/2014/what-islivablereport-AARP-ppi-liv-com.pdf (2014).

16 Gettings, Robert. M., Cooper, Robin and Chmura, Max. (2003). Financing Services to Individuals with 

Developmental Disabilities in the State of Illinois. National Association of State Directors of Developmental 

Disabilities Services, Inc.

17 Lakin, K. Charlie, Robert Doljanac, Soo-Yong Byun, Roger J. Stancliffe, Sarah Taub, and Giuseppina Chiri. 

“Factors associated with expenditures for Medicaid home and community-based services (HCBS) and 

intermediate care facilities for persons with mental retardation (ICF/MR) services for persons with intellectual 

and developmental disabilities.” Intellectual and Developmental Disabilities 46, no. 3 (2008): 200-214.

18 National Council on Disability. (2012). Deinstitutionalization: Unfinished Business.

19 Genworth. Cost of Care Survey 2021. https://www.genworth.com/aging-and-you/finances/cost-of-care.html. 

Accessed March 11, 2022.

20 Center for Medicare Advocacy, “Home Health Survey: Medicare Beneficiaries Likely Misinformed and 

Underserved,” December 15, 2021. Available at: https://medicareadvocacy.org/cma-home-health-survey

-medicare-beneficiaries-likelymisinformed-and-underserved/.

21 Bipartisan Policy Center. Optimizing the Medicare Home Health Benefit to Improve Outcomes and Reduce 

Disparities. Aprill 2022. https://bipartisanpolicy.org/download/?file=/wp-content/uploads/2022/04/BPC-Report

-Medicare-Home-Health-Benefit-4-28-22.pdf.

22 Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581, 597 (1999)(holding that public entities must provide 

community-based services to persons with disabilities when (1) such services are appropriate; (2) the affected 

persons do not oppose community-based treatment; and (3) community-based services can be reasonably 

accommodated, considering the resources available to the public entity and the needs of others who are 

receiving disability services from the entity).

23 Centers for Medicare and Medicaid Services (2021).Medicaid Long Term Services and Supports Annual 

Expenditures Report: Federal Fiscal Years 2017 and 2018. https://www.medicaid.gov/medicaid/long-term

-services-supports/downloads/ltssexpenditures-2017-2018.pdf. Accessed March 12, 2022.

24 Watts, Molly O’Malley, Musumeci, MaryBeth, & Chidambaram, P. (2021). State Variation in Medicaid LTSS 

Policy Choices and Implications for Upcoming Policy Debates. KFF. https://www.kff.org/report-section/state

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25 Centers for Medicare and Medicaid Services (2015). Nursing Home Data Compendium 2015 Edition. https://

www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/Downloads

/nursinghomedatacompendium_508-2015.pdf.

26 Hummer, D. (2020). United States Bureau of Prisons’ response to the COVID-19 pandemic. Victims & 

Offenders, 15(7-8), 1262-1276.

27 Nichols, Gabrielle, and Max Mays. “Supporting and protecting residents experiencing homelessness in 

the nation’s largest cities during COVID-19.” Journal of Public Health Management and Practice 27 (2021): 

S57-S62.

28 Landes, Scott D., Margaret A. Turk, Margaret K. Formica, Katherine E. McDonald, and J. Dalton Stevens. 

“COVID-19 outcomes among people with intellectual and developmental disability living in residential group 

homes in New York State.” Disability and Health Journal 13, no. 4 (2020): 100969.

29 Walmsley, Jan. “Institutionalization: A historical perspective.” Deinstitutionalization and people with intellectual 

disabilities: In and out of institutions (2005): 51-65.

30 Dorothea Dix, Memorial to the Legislature of Massachusetts, (Boston: Munroe & Francis, 1843).

31 Stangis, Gabrielle. ““Places of Such Towering Misery”: The History of the Institutionalization of Disabled 

People and Deinstitutionalization.” PhD diss., 2022.

32 William Bronston, 2001-2, interview by Kathy Cowan. Disability Rights and Independent Living Movement Oral 

History Project, Regional Oral History Office, University of California. The Bancroft Library, Berkeley, CA. 68.

80 National Council on Disability
33 U.S. Department of Justice: Investigation Of Glenwood And Woodward Resource Centers. (2020). “DOJ concluded 

that Iowa operates Glenwood in a manner that has subjected its residents to unreasonable harm and risk of harm, 

in violation of their Fourteenth Amendment rights, by exposing them to uncontrolled and unsupervised physical 

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34 Johnson, Kelly, and Rannveig Traustadottir, eds. 2005. Deinstitutionalization and People with Intellectual 

Disabilities: In and Out of Institutions. London: Kingsley Publisher.

35 Parish, Susan L. “Deinstitutionalization in two states: The impact of advocacy, policy, and other social forces 

on services for people with developmental disabilities.” Research and Practice for persons with Severe 

Disabilities 30, no. 4 (2005): 219-231.

36 Carey, Allison C., Pamela Block, and Richard Scotch. Allies and obstacles: Disability activism and parents of 

children with disabilities. Temple University Press, 2020.

37 Institute on Community Integration: University of Minnesota (2021). Are large institutions for people with 

intellectual or developmental disabilities a thing of the past? Policy Research Brief, Vol. 29, No. 2. https://

publications.ici.umn.edu/community-living/prb/29-2/main.

38 Chong, Natalie, Ilhom Akobirshoev, Joseph Caldwell, H. Stephen Kaye, and Monika Mitra. “The relationship 

between unmet need for home and community-based services and health and community living outcomes.” 

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39 Xu, Huiping, Kenneth E. Covinsky, Eric Stallard, Joseph Thomas III, and Laura P. Sands. “Insufficient help 

for activity of daily living disabilities and risk of all-cause hospitalization.” Journal of the American Geriatrics 

Society 60, no. 5 (2012): 927-933.

40 Kane, Robert L., Terry Y. Lum, Rosalie A. Kane, Patty Homyak, Shriram Parashuram, and Andrea Wysocki. 

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41 National Residential Information Systems Project website: http://rtc.umn.edu/risp/reports/.

42 Christopher Jenks.The Homeless 39 (1994). These academics consider deinstitutionalization a “disaster” at 

the very least for people with psychiatric disabilities. However, deinstitutionalization of people with intellectual 

and developmental disabilities receives much less criticism.

43 Lamb, H. Richard, and Leona L. Bachrach. “Some perspectives on deinstitutionalization.” Psychiatric services 52, 

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44 Costs inDepth. NCD.gov. (2015, August 12). https://ncd.gov/publications/2012/DIToolkit/Costs/inDepth/.

45 Cost scenario generated by Genworth 2020 Retrieved on January 8, 2022, from https://www.genworth.com

/bin/gnw-redesign/costofcare.

46 ADA: Americans With Disabilities Act of 1990, Pub. L. No. 101-336, § 1, 104 Stat. 328 (1990).

47 42 U.S.C. §§ 12101(a)(2), 12101(a)(5).

48 42 U.S.C. §§12132.

49 28 C.F.R. § 35.130(d) (the “integration mandate”).

50 Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581 (1999).

51 L.C., by Zimring v. Olmstead, No. CIVA1:95-CV-1210-MHS, (N.D. Ga.) (Complaint filed May 11, 1995), Complaint at 17.

52 Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581 (1999).

53 Id. at 607.

54 Ross, J., Simon, S., Irvin, C., & Miller, D. (2012). Institutional Level of Care Among Money Follows the Person 

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from the Field, (10).

55 https://www.medicaid.gov/medicaid/long-term-services-supports/money-follows-person/index.html.

56 U.S. Department of Health and Human Services, “HHS Expands Home and Community-Based Services in 

Five New States and Territories for Older Adults and People with Disabilities” (August 22, 2022), https://www

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-territories-for-older-adults-and-people-with-disabilities.html.

Strengthening the HCBS Ecosystem 81
57 Id.

58 https://www.ancor.org/newsroom/news/cms-provide-additional-funding-money-follows-person-program.

59 Kaye, Stephen. “Evidence for the impact of the money follows the person program, community living policy 

center, lurie institute for disability policy. Brandeis University.” (2019).

60 Denny-Brown, Noelle, et al. Money Follows the Person Demonstration: Overview of State Grantee Progress, 

January – June 2010. Mathematica Policy Research, Inc. January 2011.

61 https://www.medicaid.gov/medicaid/long-term-services-supports/self-directed-services/index.html.

62 https://www.appliedselfdirection.com/self-direction-programs.

63 https://www.medicaid.gov/medicaid/home-community-based-services/downloads/hcbs-settings-rule-imp.pdf.

64 Administration for Community Living. No Wrong Door System Key Elements Retrieved from https://nwd.acl.gov

/pdf/NWD-National-Elements.pdf. Accessed January 12, 2022.

65 Opinion of convening participants Barbara Merrill of American Network of Community Options and 

Resources, and Natalie Kean of Justice in Aging.

66 AA v. Bimestefer, No. 1:21-cv-02381 (D. Colo.)

67 https://www.ada.gov/olmstead/documents/colorado_lof.pdf.

68 https://www.justice.gov/crt/case/maine-home-and-community-based-services; https://www.ada.gov/maine

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69 US v State of North Dakota (2020) Retrieved from: https://www.justice.gov/opa/pr/justice-department-reaches

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70 https://www.ada.gov/olmstead/olmstead_cases_list2.htm.

71 Moorhead, Kristina, Herbold, Jill, Mori, Ben, Stemnock, Mary Pat, & Wentworth, Katherine. Meeting the 

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72 Reinhard, S. C., Flinn, B., & Amero, C. B. (2022). COVID-19’s Impact on Community-based Long-Term Services 

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73 ANCOR. (2021, September). The State of America’s Direct Support Workforce Crisis 2021. Retrieved from: 

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74 Caldwell, J., Ho, S., & Atkins, M. (2021). Dedicated Home-and Community-Based Services Funding to Support 

People with Disabilities during the COVID-19 Pandemic.

75 Kaiser Family Foundation. Waiting List Enrollment for Medicaid Section 1915(c) Home and Community-Based 

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frame=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D.

76 Feder, Judith, Laura Skopec, and Melissa M. Favreault. “Strengthening Long-Term Services and Supports.” 

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77 PHI. 2019. “Workforce Data Center.” https://phinational.org/policy-research/workforce-data-center.

78 National Council on Disability. Progress Report 2021: COVID-19’s Impact on People with disabilities. https://

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79 Brookings Institution. Essential but undervalued: Millions of health care workers aren’t getting the pay or 

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80 Kaye, H. Stephen, and Charlene Harrington. “Long-term services and supports in the community: Toward a 

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82 National Council on Disability
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qq6LdAIgtEWDKoL5k6boc-SHK7lCw7V97CYA&utm_content=148271707&utm_source=hs_email.

82 Presidential COVID-19 Health Equity Task Force Final Report and Recommendations. https://www.minorityhealth

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83 U.S. Department of Health and Human Services, HHS Office of the Assistant Secretary for Preparedness and 

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84 Concerns about unsuccessful attempts by direct care workers to unionize was also raised as an issue and 

may be important to explore, however, it is beyond the scope of this report. In Focus: Reducing Racial 

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85 U.S. Census Bureau, Demographic Turning Points for the United States: Population Projections for 2020 to 

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86 Bureau of Labor Statistics, Occupational Outlook Handbook, Home Health and Personal Care Aides https://

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87 Denny-Brown, N. (2021). The Impact of the COVID-19 Pandemic on the Long-Term Care Workforce. Health 

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88 Bipartisan Policy Center. Optimizing the Medicare Home Health Benefit to Improve Outcomes and Reduce 

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89 Center for Medicare Advocacy, “Home Health Survey: Medicare Beneficiaries Likely Misinformed and 

Underserved,” December 15, 2021. Available at: https://medicareadvocacy.org/cma-home-health-survey

-medicare-beneficiaries-likelymisinformed-and-underserved/.

90 Bipartisan Policy Center. Optimizing the Medicare Home Health Benefit to Improve Outcomes and Reduce 

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91 South Central Alaska Area Health Education Center (2021). Direct Support Professional Apprenticeship 

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93 National Alliance of Direct Support Professionals. (2021, September). A DSP Apprenticeship Program at the 

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94 The QuILTSS Institute (2019). What is QuILTSS? Retrieved from: https://quiltss.org/.

95 Sabatello, Maya, Scott D. Landes, and Katherine E. McDonald. “People with disabilities in COVID-19: fixing our 

priorities.” The American Journal of Bioethics 20, no. 7 (2020): 187-190.

Strengthening the HCBS Ecosystem 83
96 Section 504: Frequently Asked Questions. https://www.hud.gov/program_offices/fair_housing_equal_opp

/disabilities/sect504faq#:~:text=Answer%3A%20For%20a%20federally%2Dassisted,for%20persons%20

with%20mobility%20disabilities.

97 CRA/LA Agrees to Pay $3.1 Million to Resolve Alleged Misuse of Federal Funds for Inaccessible Housing. https://

www.justice.gov/opa/pr/crala-agrees-pay-31-million-resolve-alleged-misuse-federal-funds-inaccessible-housing.

98 24 CFR 8.28(a)(3).

99 HUD technical review comment. August 17, 2022.

100 24 CFR 8.56(a).

101 24 CFR 8.56(b).

102 Los Angeles Times, August 30, 2016, ‘L.A. to spend more than $200 million to settle suit on housing for 

disabled.” https://www.latimes.com/local/lanow/la-me-ln-housing-settlement-disabled-20160828-snap-story.html. 

Accessed June 12, 2022.

103 Id.

104 Citing discrimination, HUD denies L.A. $80M. Politico, July 19, 2019. https://www.politico.com/story/2019

/07/19/discrimination-hud-los-angeles-1606093.

105 [TK]

106 Access Living of Metropolitan Chicago v. City of Chicago, No. 1:18-cv-03399 (N.D. Ill.)

107 https://www.hud.gov/program_offices/fair_housing_equal_opp/accessibility_first_fair_housing

108 US v Dominion Management LLC (21-CV-01187-SGC). https://www.justice.gov/opa/pr/justice-department

-resolves-lawsuit-alleging-disability-based-discrimination-developer-and.

109 Aurand, Andrew. The Gap: A Shortage of Affordable Homes. (March 2021) National Low Income Housing Coalition.

110 Brucker, Debra L., and Veronica Helms Garrison. “Health disparities among Social Security Disability Insurance 

and Supplemental Security Income beneficiaries who participate in federal rental housing assistance 

programs.” Disability and Health Journal 14, no. 3 (2021): 101098.

111 US Department of HUD. (2020, May 12). CARES Act Mainstream Funding for PHAs Awarding Funding 

Allocations in the 2017 and 2019 Competitions. Retrieved from: https://www.hud.gov/sites/dfiles/OCHCO

/documents/2020-09pihn.pdf.

112 US Department of HUD. (2020, September 8). Mainstream Vouchers – Non-Competitive Opportunity for 

Additional Vouchers Authorized by the CARES Act, Temporary Waivers and Alternative Requirements, and 

Modified 2020 Housing Assistance Payment (HAP) Renewal Calculation. Retrieved from: https://www.hud.gov

/sites/dfiles/PIH/documents/PIH-2020-22-OPHVPCARESActImplementationForMainstream.pdf.

113 Center on Budget and Policy Priorities. Families Wait Years for Housing Vouchers Due to Inadequate Funding. 

(July 2021). https://www.cbpp.org/research/housing/families-wait-years-for-housing-vouchers-due-to

-inadequate-funding.

114 https://www.hud.gov/program_offices/public_indian_housing/programs/hcv/ned.

115 Technical Assistance Collaborative. (2022). Database of Vouchers for People with Disabilities. Retrieved from 

https://www.tacinc.org/resources/vouchers-database/.

116 Office of Public and Indian Housing. (2021, November). HCV-Special Purposes Vouchers. Retrieved from: 

https://app.powerbigov.us/view?r=eyJrIjoiM2Y2OTQ2MTAtODVkNC00YmM2LThhOWEtZWY4MGU5YWFmZD

FmIiwidCI6IjYxNTUyNGM1LTIyZTktNGJjZC1hODkzLTExODBhNTNmYzdiMiJ9.

117 Id. at endnote 110. Center on Budget and policy Priorities.

118 National Multifamily Housing Council. Source of Income Laws By State, County and City. (April 2022). https://

www.nmhc.org/research-insight/analysis-and-guidance/source-of-income-laws-by-state-county-and-city/.

119 S.4485 - A bill to amend the Fair Housing Act to prohibit discrimination based on source of income, veteran 

status, or military status.117th Congress (2021-2022). https://www.congress.gov/bill/117th-congress/senate

-bill/4485?s=1&r=2. Also see the companion bill introduced in the House of Representatives at https://www

.congress.gov/bill/117th-congress/house-bill/8213?q=%7B%22search%22%3A%5B%22peters%22%2C%22

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84 National Council on Disability
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123 https://www.congress.gov/bill/111th-congress/house-bill/1408/text.

124 https://visitability.org/policy-strategies/ncil-testimony-to-congress-in-support-of-the-inclusive-home-design-act/.

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Strengthening the HCBS Ecosystem 85
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142 Id.

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144 Pub. L. 117-2.

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149 Interview with Atlantis Center staff.

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152 https://acl.gov/programs/centers-independent-living/list-cils-and-spils.

153 Emery, Erin. (2020, January 20). Breaking down barriers to a safe hospital discharge through a new 

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