Report to the President 2017

America’s Direct Support Workforce Crisis:

Effects on People with Intellectual Disabilities,

Families, Communities and the U.S. Economy
Report to the President 2017: America’s Direct Support Workforce Crisis 2

DISCLAIMER

This Report to the President 2017, America’s Direct 

Support Workforce Crisis: Effects on People with 

Intellectual Disabilities, Families, Communities and the

U.S. Economy does not necessarily reflect the views of 

the United States Department of Health and Human 

Services (HHS) or the agencies represented by the ex 

officio members of the President’s Committee for 

People with Intellectual Disabilities (PCPID).

Information and data contained in this Report were 

contributed by authorities in the fields of intellectual 

and developmental disabilities, disability research, 

workforce development, public policy and other related 

fields. The personal opinions that such contributors may 

hold or choose to express outside of this Report do not 

necessarily reflect the views of the PCPID, HHS or other 

federal agencies.

This Report does not suggest that the HHS-PCPID 

endorses any organization, product or service described 

in this document.
President’s Committee for People with Intellectual Disabilities 3

President’s Committee for People with Intellectual Disabilities

Washington, D.C. 20447

President Donald J. Trump

The White House

1600 Pennsylvania Avenue, NW

Washington, D.C. 20500

Dear Mr. President:

On behalf of the President’s Committee for People with Intellectual Disabilities (PCPID), it is an honor to bring this 

important issue to you and your Administration. As Chair, I have a developmental disability, and I am fortunate to 

lead a dedicated group of committee members to serve your Administration and the American people. For many of 

us, a personal relationship with an individual with an intellectual disability inspires us to work to improve the 

quality of life experienced by all people with intellectual disabilities and their families.

The members of the President’s Committee appreciate the opportunity to submit for your consideration the 2017 

Report, America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, 

Communities and the U.S. Economy. The intended outcome of this Report is to ensure that you and the 

Administration are fully aware of and understand the effects of the direct support workforce crisis and the 

opportunities to address it in ways that strengthen the ability of people with intellectual disability to both 

participate in and contribute to their communities and the American economy. Not only does the crisis facing this 

workforce threaten people with intellectual disability and their families; it also undermines the stability, efficiency 

and ability to grow much needed long-term services and supports and, therefore, undermines the overall U.S. 

economy.

Highlighting this critical issue continues the tradition established by President John F. Kennedy in 1961 when 

he established a blue-ribbon panel to address the needs of people with intellectual disability and their families.

The Report specifically examines the following areas to determine how the direct support workforce crisis can be 

corrected and this workforce sustained so people with intellectual disability are included and engaged in all aspects 

of society:

• Overview of the direct support workforce

• Critical challenges faced by the long-term services and supports industry

• Effects of the workforce crisis

• Economic and other factors that have influenced the crisis

• Promising practices to address the direct support workforce crisis

We are hopeful that this Report will provide strategies to strengthen federal policies for the direct support workforce 

and, by extension, the overall U.S. economy.

Sincerely,

Jack Brandt, Chair
Report to the President 2017: America’s Direct Support Workforce Crisis 4

TABLE OF CONTENTS

Committee Profile............................................................................................................................................................. 6

Selecting Direct Support Workforce Crisis as Our Priority................................................................................................ 6

Executive Summary........................................................................................................................................................... 8

Recommendations............................................................................................................................................................ 9

Overview and Introduction............................................................................................................................................. 11

The Direct Support Workforce........................................................................................................................................ 13

Pervasive Workforce Challenges Result in Crisis............................................................................................................. 19

Consequences of the Direct Support Workforce Crisis................................................................................................... 20

Factors Influencing the Crisis.......................................................................................................................................... 26

Moving Toward Solutions Using Promising Practices..................................................................................................... 33

Recommendations.......................................................................................................................................................... 40

References...................................................................................................................................................................... 42

Frequently Used Acronyms............................................................................................................................................. 46

Appendix A - NADSP Competencies................................................................................................................................ 47

Appendix B - NADSP Code of Ethics................................................................................................................................ 51

Appendix C - Joint Position Statement on the DSP Workforce on behalf of AAIDD and NADSP..................................... 55

Appendix D - Implementing Direct Support Professional Credentialing in New York..................................................... 57

President’s Committee on Persons with Intellectual Disabilities ................................................................................... 59
President’s Committee for People with Intellectual Disabilities 5

TABLES

Table 1. Change in demand for DSPs for persons withID/DD, 2003–2013 ....................................................................14

FIGURES

Figure 1. DSP Scope of Practice ......................................................................................................................................16

Figure 2. Direct Support Professional competency sets over time.................................................................................16

Figure 3. New York Career Gear Up credential modeland framework ..........................................................................17

Figure 4. Direct support wages overtime, 2005–2015...................................................................................................19

Figure 5. A summary of National Core Indicator Staff Stability key statistics.................................................................21

Figure 6. ID/DD expenditures over time, 1977–2015.....................................................................................................27

Figure 7. Living settings of people with ID/DD................................................................................................................28

Figure 8. Types of employment and day services received by peoplewith ID/DD.........................................................29

Figure 9. Workforce conditions that deter entry intothe profession.............................................................................30

Figure 10. U.S. unemployment rate overtime, 2007–2017 ...........................................................................................30
Report to the President 2017: America’s Direct Support Workforce Crisis 6

COMMITTEE PROFILE

In 1961, President John F. Kennedy called the nation’s 

attention to the limited opportunities for people with 

an intellectual disability (ID) in the U.S. He sought 

recommendations on how this nation could better 

respond to inadequate and often deplorable 

treatment of individuals with ID. In 1966, President 

Lyndon B. Johnson established the President’s 

Committee on Mental Retardation to ensure the right 

of a “decent, dignified place in society” for people 

with ID. The panel has been maintained by every 

administration since, although to underscore the 

importance of respect and elimination of negative 

labeling, in April 2003,the Committee was renamed 

the President’s Committee for People with 

Intellectual Disabilities (PCPID).

PCPID serves in an advisory capacity to the President of 

the United States of America and the Secretary of

Health and Human Services (HHS) on matters related to 

individuals with intellectual disability. The Committee 

upholds the right of all people with ID to pursue a 

quality of life that promotes independence, selfdetermination and economic self-sufficiency. Our goal 

is to ensure opportunities for people with ID and 

related developmental disabilities (DD) to live and 

participate in American communities each and every 

day by going to school, being active members of faith 

communities, working and paying taxes, and being 

friends, neighbors and co-workers. Presidential 

Executive Order 12994, as amended by Executive 

Orders 13309, 13446 and 13708, stipulates that the 

Committee shall provide advice to the President 

concerning expansion of educational opportunities, 

promotion of homeownership, assurances of workplace

integration, improvement of transportation options, 

expansion of full access to community living, and 

increased access to technology.

The Committee currently consists of 13 citizen 

members appointed by the President, including a Chair 

who is responsible for planning the PCPID strategic 

direction. There are also 12 ex officio (federal 

government) members designated by the President. 

The ex officio members are the Secretary of Health and

Human Services, the Secretary of Education, the 

Secretary of Labor, the Secretary of Housing and Urban

Development, the Secretary of Commerce, the 

Secretary of Transportation, the Secretary of the 

Interior, the Secretary of Homeland Security, the 

Attorney General of the United States, the CEO of the 

Corporation for National and Community Service, the 

Chair of the Equal Employment Opportunity 

Commission, the Chair of the National Council on 

Disability, and the Commissioner of the Social Security 

Administration.

PCPID is supported by federal employees, including the 

Commissioner of the Administration on Disabilities 

(AoD), who serves as the Committee’s Designated 

Federal Officer. Within the AoD, the Administration on 

Intellectual and Developmental Disabilities (AIDD) is the 

federal agency responsible for implementation and 

administration of the Developmental Disabilities 

Assistance and Bill of Rights Act of 2000 (DD Act). 

Organizationally, AoD is located within the 

Administration for Community Living (ACL) at the U.S. 

Department of Health and Human Services.

SELECTING DIRECT SUPPORT WORKFORCE CRISIS

AS OUR PRIORITY

In August 2016, the President’s Committee for 

People with Intellectual Disabilities (PCPID)

identified possible topics for the 2017 Report to the 

President (RTP). Among the topics identified were 

Direct Support Professionals (DSPs); integrated 

employment; social integration; intersectionality 

(e.g., disability and LGBTQ); and the Supreme 

Court’s Olmstead decision and its mandate to 

reduce segregation in service systems. The PCPID 

polled its members about the most pressing topic 

for the 2017 Report, with the majority (56 percent)

of votes cast for the Direct Support Professional 

workforce, and a sizeable number (28 percent) 

voting to address the relatively slow progress in 

increasing integrated employment for people with 

intellectual and developmental disabilities.

Since the topics of direct support workforce and 

integrated employment both had considerable support, 

panels of federal and community partners were 

assembled to make the case for the importance of 

each. After the panels presented
President’s Committee for People with Intellectual Disabilities 7

and Committee discussion occurred, a vote was 

conducted. The final tally yielded overwhelming support 

(87percent) for addressing the crisis in the Direct 

Support Professional workforce as the topic of the 2017

Report to the President.

A work group was formed to discuss the outline for the 

2017 RTP, and the initial draft was developed by the 

Chair and ex officio members. The outline was shared 

with the full Committee in January 2017. PCPID 

members then formed two work groups, focusing on 

(1) the economic impact of DSPs and (2) the individual 

and family impact of DSPs. Each work group met twice 

to discuss the outline, identify resources and consider 

recommendations.

During the March 2017 PCPID meeting, the work groups 

met to discuss their respective sections and develop 

recommendations for the 2017 RTP. The full Committee 

heard work groups’ reports and then finalized 

Recommendations conveyed in this Report. 

Subsequently, the full Committee reviewed drafts of the 

report and approved its transmittal to the White House 

through the Secretary of Health and Human Services, 

the Honorable Tom Price.
Report to the President 2017: America’s Direct Support Workforce Crisis 8

EXECUTIVE SUMMARY

People with an intellectual disability (ID) rely on 

Direct Support Professionals (DSPs) for daily 

support that enables them to live in U.S. 

communities. Their families rely on the DSP

workforce to provide reliable quality support so

they can work and have respite from the day-today stressors of caregiving. Challenges in finding, 

keeping and training this workforce persist and 

have reached crisis levels in the long-term services 

and supports (LTSS) industry.

The direct support workforce is one of the highest in 

demand in the U.S. The expansion needed in this 

workforce is unlikely to take place without significant 

changes in how direct support professionals are 

recruited, trained and supported. The pipeline for 

people entering the Direct Support Profession is not 

keeping pace with the number of DSPs needed by 

Americans with ID and their families. Low wages, scant 

benefits, limited training and lack of career 

advancement opportunities have led over the past 30 

years to the following nationwide results:

• average DSP wages of $10.72 per hour

• average DSP wages below the federal poverty level 

for a family of four

• half of DSPs relying on government-funded and

means-tested benefits

• most DSPs working two or three jobs

• average annual DSP turnover rates of 45

percent (range 18–76 percent)

• average vacancy rates of more than 9 percent

This currently untenable crisis stems from the 

following factors:

• high staffturnover;

• growing demand for services due to the growth 

and aging of the U.S. population in general;

• increased survival rates for people with ID;

• demographic shifts resulting in fewer people 

moving into the DSP workforce;

• persistently non-competitive aspects of direct 

support employment, including low wages, poor 

access to health insurance, and lack of paid time off 

(PTO) and other benefits;

• high stress and demands of direct support 

employment, including round-the-clock, sevendays-a-week work;

• insufficient training and preparation for DSP roles;

and

• lack of professional recognition and status for 

skilled DSPs.

Not only does the DSP crisis impact individuals and 

families, but it is also extremely costly to the human 

services system and the overall U.S. economy.

These realities put people with ID who need assistance 

at great risk of harm, contribute to unreasonably long 

waiting lists for services and are leading many people 

to reconsider more expensive institutional models of 

segregated care outside their home. The direct support 

workforce and the service system that supports it are in 

a crisis that will result in catastrophic outcomes for 

people with ID and their families unless significant and

immediate responses are implemented.

Solutions to the direct support workforce crisis are

critical to ensuring that people with ID can live, work and 

contribute to their communities. Such solutions are also

important because of their significant economic 

implications. Simply put, responding to the direct 

support workforce crisis makes economic sense.

Over the past two decades, small-scale efforts have been 

made to find solutions, with small investments provided 

by federal, state and local governments. Most of these 

efforts have been grant-funded demonstration projects 

that don’t prove fully sustainable after the grant funding 

ends. Practices that would address the workforce crisis 

include:

• improving professional identity and 

recognition;

• teaching business and organization leaders skills 

to improve their ability to recruit, select and retain 

direct service employees;

• using self-directed services that permit individuals 

and families to recruit, select and retain their own

DSPs;

• using worker cooperative and independent 

provider models;
President’s Committee for People with Intellectual Disabilities 9

• using competency-based training models that lead 

to credentialing or certification of staff and yield 

wage increases; and

• using technology-enhanced supports.

Finding solutions to this crisis requires bold leadership 

and commitment from the Administration and its many 

federal agencies with important roles to play in keeping 

promises made to persons with ID. It will also require 

bipartisan action on the part of Congress. The direct 

support workforce is where the rubber hits the road in 

the LTSS industry, and there is no issue more pressing in 

regard to sustainability of service provision for people 

with ID than responding to the serious crisis it now

faces.

RECOMMENDATIONS

This direct support workforce crisis has been coming for 

decades. Policy makers and their allies have been slow to 

make finding and implementing solutions a priority. It will 

take courageous leadership within the Administration and 

Congress to fund and ensure implementation of targeted 

solutions to address this crisis. Without bold and swift 

action, the LTSS system is threatened for all people with 

ID who rely on it to meet their most basic needs. The 

President’s Committee for People with Intellectual 

Disabilities encourages the Administration to consider the 

following Recommendations as possible contributions to 

resolving the direct support workforce crisis. We urge 

that the actions and programs presented here be 

developed and implemented, and that their outcomes be 

evaluated.

1. The U.S. Department of Health and Human 

Services, Centers for Medicare & Medicaid Services 

should ensure through review of Home and 

Community-Based Services Waivers or regulation 

that states include sufficient Direct Support 

Professional wages and compensation packages in 

their rate-setting methodologies for long-term 

services and supports to people with intellectual 

and developmentaldisabilities.

2. The U.S. Department of Health and Human 

Services, Administration for Community Living 

should provide technical assistance and financial or 

programmatic incentives to states to promote the 

use of technology solutions in long-term services 

and supports, such as remote monitoring, sensors, 

robotics, and smart homes, to create efficiencies, 

reduce costs and support community living for 

people with intellectual disabilities.

3. The U.S. Department of Health and Human 

Services, Administration for Community Living 

should provide funding to states through grants 

and contracts to develop, implement and 

evaluate comprehensive programsdesigned

to provide training and technical assistance to 

employers that focus on improving business 

acumen to reduce Direct Support Professional 

vacancy rates, improve retention and promote 

efficient, high-quality long-term services and 

supports for people with intellectual and 

developmental disabilities.

4. The U.S. Departments of Education, Health and 

Human Services, and Labor should create grant 

programs and financial incentives for states to 

expand the pool of Direct Support Professionals 

through recognition programs, grassroots 

campaigns and training efforts designed to expand 

awareness about the profession and encourage 

greater participation by people with disabilities, 

men, retirees, and young adults across diverse 

racial, ethnic and cultural groups.

5. The U.S. Department of Health and Human 

Services should work with states to expand 

utilization of self-direction in long-term services 

and supports so that family, friends and 

neighbors can be hired as Direct Support

Professionals.

6. The U.S. Department of Labor through the Bureau 

of Labor Statistics should investigate ways to 

recognize “Direct Support Professional” as a 

distinct occupation title and provide routine labor 

statistical reporting on this occupation.

7. The U.S. Department of Health and Human 

Services, Centers for Medicare & Medicaid 

Services (CMS) should ensure through regulation 

and review of Home andCommunity-Based 

Services Waivers that states identify provider 

qualifications that recognize Direct Support 

Professionals as skilled practitioners who are 

community navigators, facilitating greater 

community and economic involvement for people 

with intellectual and developmental disabilities. 

Additionally, CMS and statesshould
Report to the President 2017: America’s Direct Support Workforce Crisis 10

ensure that compensation rates are aligned with 

appropriate status, value, respect, a living wage 

and benefits.

8. The U.S. Department of Health and Human Services, 

Administration for Community Living and Centers 

for Medicare & Medicaid Services should develop 

federal standards and work with the Department of

Labor to implement specialized credentials and 

professional development opportunities for Direct 

Support Professionals, ensuring: (a) that people with 

intellectual disabilities are trainers and mentors, (b) 

that programs are focused on competencies 

specifically identified for DSPs, (c) that completion 

of training to meet standards is voluntary and occurs 

post-hire, and (d) that the credentials result in 

increased wages and access to benefits for DSPs.

9. The U.S. Department of Labor should engage the 

broader American workforce system to find 

solutions to this crisis by using community 

colleges and American job centers to develop 

and invest in career training and credentialing for 

Direct Support Professionals.

10. The U.S. Department of Health and Human 

Services and the U.S. Department of Labor should 

engage the business community and provide 

grants and other incentives to states to develop 

online matching registry services and other 

creative options to match people with intellectual 

disabilities and their families who need help 

finding available DSPs.
President’s Committee for People with Intellectual Disabilities 11

OVERVIEW AND INTRODUCTION

People with intellectual disabilities (ID) rely on 

Direct Support Professionals (DSPs) for daily 

support that enables them to live in U.S.

communities. Their families rely on this workforce 

to provide reliable quality support so they can work 

and have respite from the day-to-day stressors of 

caregiving. Challenges in finding, keeping and 

training this workforce persist and have reached 

crisis levels.

WHO ARE PEOPLE WITH INTELLECTUAL AND 

RELATED DEVELOPMENTAL DISABILITIES?

In the United States, people with intellectual and related 

developmental disability (ID/DD) live, participate in and 

contribute to their communities as friends, neighbors, 

co-workers, voters and taxpayers. These individuals 

have a wide range of limitations, and many have lifelong 

needs that require ongoing assistance from others. 

People with ID/DD have substantial and lasting mental 

or physical impairments that are evident at birth or in 

the developmental period and require assistance and 

support in areas of learning, language, self-care, making 

decisions, independent living and finding and keeping 

employment.

Developmental disability (DD) is a broader term that 

includes most people with ID but also individuals 

with substantial limitations first evident in the 

developmental period but that may derive from 

conditions other than ID (e.g., autism, cerebral palsy 

and others). Importantly, people with ID and people 

with DD receive the same types of services from the 

same types of agencies; therefore, these terms are 

often used interchangeably to describe the 

individuals who are the focus of this Report. Based 

on a sample of more than 17,000 users of state 

ID/DD services in 35 states, about 93 percent of the 

persons served had either a primary or a secondary 

diagnosis of ID (Hiersteiner, 2016). The best 

estimate of the prevalence of ID/DD (Larson et al., 

2001) suggests there are about 5 million

Americans with ID/DD. Of these individuals, about 

1.4 million are receiving or formally waiting for 

services from state developmental disabilities 

program agencies (Anderson et al., 2016).

PROMISES MADE TO PEOPLE WITH 

INTELLECTUAL AND RELATED 

DEVELOPMENTAL DISABILITIES

In many ways and places, the U.S. Congress, acting on 

behalf of the American people, has made serious and 

important promises to people with ID/DD. These 

promises have derived in large measure from the 

landmark Rehabilitation Act of 1973 (as amended), in 

which Congress affirmed that disability “in no way 

diminishes the right of individuals to: (a) live

independently, (b) enjoy self-determination, (c) make 

choices, (d) contribute to society, (e) pursue 

meaningful careers, and (f) enjoy full inclusion and 

integration in the economic, political, social, cultural 

and educational mainstream of American society” (29 

USC 701(a) (2)). In the Developmental Disabilities 

Assistance and Bill of Rights Act (DD Act – Public Law 

106-402), Congress mandated that “individuals with 

developmental disabilities have access to opportunities 

and necessary support to be included in community 

life, have interdependent relationships... [and] access 

to and use of recreational, leisure and social 

opportunities to enrich their participation in 

community life” (Sec. 101(c) (8) & (12)).

THE CONNECTION BETWEEN NATIONAL 

PROMISES AND THE DIRECT SUPPORT 

WORKFORCE

The support needed by persons with ID/DD is primarily 

provided by family caregivers and paid workers. Most of 

the paid, hands-on support that is provided is done by 

DSPs. Due to the relatively high levels of need for 

assistance among people with ID/DD, Congress has 

found that “as increasing numbers of individuals with 

developmental disabilities are living, learning, working 

and participating in all aspects of community life, there 

is an increasing need for a well-trained workforce... to 

provide the services, supports and other forms of 

assistance required to enable the individuals to carry out 

those activities” (Sec. 101(a)(14)). Title III of the DD Act, 

which focuses on a program for direct support workers 

who provide assistance to individuals with DD, indicates 

that these workers have played essential roles in 

supporting people with ID/DD and expanding their 

community options. Congress also found that individuals
Report to the President 2017: America’s Direct Support Workforce Crisis 12

with ID/DD benefit from assistance from direct support 

workers who are well trained, and from receiving 

services from professionals who have spent time as 

direct support workers (Public Law 106-402, Sec. 301. 

FINDINGS [42 USC 15111]). In short, for people with 

ID/DD to live in their communities, they must have 

available to them DSPs who are well trained in and will 

provide them with individualized supports in all facets 

of community life: home, work, education, faith, family, 

friendship, activity and the responsibilities of 

citizenship (e.g., paying taxes and voting).

THE DIRECT SUPPORT WORKFORCE CRISIS

The direct support workforce is one of the highestdemand workforces in the U.S. The expansion needed in 

this workforce is unlikely to happen without significant 

changes in how professionals are recruited, trained and 

supported. Low wages, scant benefits, limited training 

and lack of career advancement opportunities have 

resulted over the past 30 years in high turnover and 

vacancy rates throughout the long-term services and 

supports (LTSS) industry. This is a persistent and growing 

crisis that has worsened considerably in the 20 years 

since the PCPID last noted it in its 1998 Report to the 

President, Opportunities for Excellence (HHS, 1998). 

Individuals, families and businesses find it increasingly 

difficult, and sometimes impossible, to find and keep 

good employees. These realities put people with ID who 

need assistance at great risk of harm, contribute to 

unreasonably long waiting lists for services and are 

leading many people to reconsider more expensive 

institutional models of segregated care outside their 

home. The direct support workforce and the service 

system that supports it are in a crisis that will result in 

catastrophic outcomes for people with ID and their 

families unless significant and immediate responses are 

implemented.

The pipeline of people entering the Direct Support

Profession is not keeping pace with the number of DSPs 

needed by Americans with ID and their families. With 

annual DSP turnover rates nearing 50 percent

nationally, human services programs each year must 

recruit and train a number of new employees equal to 

more than half of their current workforce just to 

support their current clientele, and even more new 

DSPs to meet the growing demand of new entrants 

into human services

programs. This currently untenable crisis stems from 

the following factors:

1. high staff turnover;

2. growing demand for services due to the growth and 

aging of the U.S. population ingeneral;

3. increased survival rates for people with the 

complex health needs found among persons with

ID/DD;

4. demographic shifts resulting in fewerpeople 

moving into the DSP workforce;

5. the persistently non-competitive aspects of direct 

support employment, including low wages, poor 

access to health insurance and lack of paid time off 

(PTO) and other benefits;

6. the high stress and demands of direct support 

employment, including round-the-clock, sevendays-a-week work;

7. insufficient training and preparation forDSP 

roles; and

8. lack of professional recognition and status for 

skilled DSPs.

Not only does the DSP crisis impact individuals and 

families, but it is also extremely costly to the human 

services system. Solutions to the direct support 

workforce crisis are critical to ensuring that people 

with an ID can live, work and contribute to their 

communities. Such solutions are also important 

because of the significant economic implications. 

Simply put, responding to the direct support 

workforce crisis makes economic sense, as it will 

achieve the following:

1. Promote job growth and related economic 

development by filling critical vacancies and 

supporting the continued growth needed in the 

long-term services and support industry tomeet the 

growing demand.

2. Enhance cost-effectiveness and savings by 

increasing retention and reducingthe costs 

associated with turnover (e.g., worker 

recruitment, selection and training; overtime 

pay to remaining employees).

3. Provide support to family caregivers who are often 

unemployed or underemployed due to the need to 

provide care and support to family members with 

an ID, enabling them to increase
President’s Committee for People with Intellectual Disabilities 13

their participation in the labor force and their 

contributions to the economy.

4. Improve quality of supports and services by 

ensuring a qualified, competent and stable 

workforce reducing injuries, illnesses andcritical 

incidents of abuse and neglect.

Addressing the direct support workforce crisis will sustain 

and improve opportunities for individuals with ID/DD to 

participate in and contribute meaningfully to all facets of 

society, including the economy of the U.S., its territories 

and tribal nations. Finding solutions will also constitute a 

response to real human needs. When direct support 

workers are not available, are poorly trained, lack 

understanding of an individual’s needs or are unfamiliar 

with effective ways to support individuals in living and 

working in their communities, people with ID/DD and 

their families suffer. They lose heart about achieving the 

quality of experiences and daily life

that government leaders have promised them. Families 

despair over what the crisis of commitment will mean to 

their loved ones with disability as they (family members 

who provide assistance) grow older and are no longer 

able to help. People feel real danger in the present crisis 

because they know the current workforce is not 

sufficient to dowhat is required, and they know that 

without concerted action, the future looks even worse.

Finding solutions to this crisis requires bold leadership 

and commitment from the Administration and its many 

federal agencies with important roles to play in keeping 

promises made to persons with ID/DD. It will also require 

bipartisan action on the part of Congress. The direct 

support workforce is where the rubber hits the road in 

the LTSS industry, and there is no issue more pressing in 

regard to sustainability of service provision for people 

with ID/DD than responding to the serious crisis it now 

faces.

THE DIRECT SUPPORT WORKFORCE

WHO ARE DIRECT SUPPORT PROFESSIONALS?

Direct Support Professionals (DSPs) support individuals 

with an intellectual disability (ID) who need assistance 

to live their lives and enjoy the same benefits as people 

without disabilities. They support people in ways that 

enhance inclusion and independence. More 

specifically, as defined in the Congressional Direct 

Support Professional Recognition Resolution in 2003

(S. Con. Res. 21/H. Con. Res. 94), DSPs are individuals 

who are employed to “provide a wide range of 

supportive services to individuals with an ID on a dayto-day basis, including habilitation, health needs, 

personal care and hygiene, employment, 

transportation, recreation, housekeeping and other 

home management-related supports, so that these

individuals can live and work in their communities” 

and “lead self-directed, community and social lives” 

(Congressional Record, November 4, 2003, p. H10301).

DSPs work in a range of settings, including family homes, 

people’s own homes, intermediate care facilities, small 

community residential group homes, community job 

sites, vocational and day training programs and others. 

They include full-time (70 percent) and part-time (30

percent) employees

(Hewitt et al., 2015). Employers assign a wide range 

of job titles for Direct Support Professionals, such 

as direct support specialist, habilitation 

specialist, job coach, residential counselor, 

family care provider, personal assistant and 

others. The vast majority of DSPs work in the 

private sector for both for-profit and nonprofit 

companies. In some states, large numbers of 

DSPs work for state agencies that still deliver 

services directly to people with an ID. A small 

percentage of the DSP workforce is represented 

by organized labor.

SIZE OF THE DIRECT SUPPORT WORKFORCE

Direct Support Professionals (DSPs) for persons with ID 

are one segment of a vast human services industry that 

provides long-term services and supports (LTSS) to many 

people with significant needs, including frail elders, 

people with behavioral health needs and people with 

physical and other types of disabilities. The Bureau of 

Labor Statistics (BLS) does not have a specific 

occupational category for DSPs who provide supports 

for people with an ID. The U.S. Department of Labor 

(DOL) subsumes DSPs under three primary Standard 

Occupational Classifications: (1) Personal Care Assistant,

(2) Home Health Aide and (3) Nursing
Report to the President 2017: America’s Direct Support Workforce Crisis 14

Assistant. In 2015 there were nearly 4.5 million direct 

support workers in these three occupational categories 

(Espinoza, 2017; BLS, 2015), which are among the top 

five fastest growing occupations in the U.S. (BLS, 2015). 

However, given the range and variation of job titles 

assigned to DSPs for persons with an ID, these DSPs may 

be uncounted or undercounted by the current BLS

classification.

Given the difficulty of using BLS data to specifically 

identify the direct support workforce that supports 

people with an ID, estimates are made based on the 

number of people who receive services and what is 

known about staffing ratios. Using average staffing ratios 

per person served as drawn from state-specific studies, it 

is possible to make reasonable estimates. As indicated in 

Table 1, it is estimated that in 2013 there were about 

880,000 full-time equivalent (FTE) Direct Support 

Professional positions allocated to providing assistance 

to the 1.4 million individuals with ID/ DD receiving 

services under the auspices of state ID/DD program

agencies. Given that 30 percent of the DSP workforce is 

part-time, and estimating that 2.5 part-time workers are 

needed to fill one full-time equivalency, there were an 

estimated 1,276,000 DSPs working to support individuals 

with ID/DD on June 30, 2013. The estimated 880,000 

FTEs in 2013 reflect an increase of about 89,000 (11.3 

percent ) in the decade between 2003 and 20113. 

Importantly, because of shifts in how services and 

supports are typically provided to individuals with 

ID/DD, the ratio of DSPs to service users decreased from 

an estimated 0.564 to 0.496 over the decade.

Simply to sustain services as they are, and given current 

turnover rates, every year 574,200 new DSPs need to 

take new jobs in the workforce. Notably, too, it would 

require an additional 167,001 new DSPs to meet the 

needs of the more than 200,000 individuals wait-listed 

for services. With projected growth in demand, 

worsening workforce issues and a strong U.S. economy, 

this number is expected to grow yearly between now 

and 2030.

DIRECT SUPPORT PROFESSIONAL 

SCOPE OF WORK

DSPs provide assistance in a wide range of life 

activities across the lifespan. They work with 

children, youth, young adults, adults in midlife and 

elderly individuals. They help people make informed 

decisions and exercise choice by teaching, training 

and supporting them in all aspects of life. DSPs are 

charged with keeping people with an ID safe and 

healthy, and in doing so, they follow health and

Table 1. Change in demand for DSPs for persons with ID/DD, 2003–2013

2003 2013

SERVICE TYPE Users FTE DSPS Users FTE DSPS

State Services 42,835 1.34 57,399 35,602 1.34 47,706

Private/Community 359,446 1.13 406,174 350,990 1.13 398,618

In-Home/Family 500,004 0.25 125,001 758,031 0.25 194,508

Vocational/Day 465,000 0.35 162,750 605,301 0.35 211,855

Persons in Nursing 

Facilities 35,005 1.13 39,556 24,021 1.13 27,144

Total Current 

Recipients 1,403,290 0.56 790,820 1,773.945 0.50 879,831

People with ID/IDD 

Who Are Wait-listed 75,288 0.56 42,161 232,204 0.50 115,173

Table notes

1 The ratios of DSPs to service users were computed as part of the 2006 Report to Congress: The Supply of Direct Support Professionals Serving Individuals with Intellectual 

and Developmental Disabilities, prepared by the Office of the Assistant Secretary for Planning and Evaluation (available at https://aspe.hhs.gov/basic-report/supply-directsupport-professionals-serving-individuals-intellectual-disabilities-and-other-developmental-disabilities-report-congress). Data on service users for the years shown come from 

Residential Services for Persons with Developmental Disabilities: Status and Trends (University of Minnesota) and The National Report on Employment Services and 

Outcomes (University of Massachusetts-Boston).

2 The wait-list ratio of DSPs to users is computed at 0.71 based on the 2003 estimated ratios of DSPs to own home and family home users (0.25) and the ratio of DSPs to 

private/community home users (1.13) and the assumption that those on waiting lists would go to each of those categories of home, in roughly equal distribution.

3 There are 4.2 FTE shifts per week (168 hours/40), so a staffing ratio of 1:1 means that on average there are 4.2 persons with ID/DD supported by one DSP at any one time. 

4 The count of service users is a duplicated count becausesome users use more than one service type.
President’s Committee for People with Intellectual Disabilities 15

A Day in the Work Life of a DSP

I have been a DSP for almost 14 years. This is a day in 

my life as a Direct Support Professional. I start my day

at 7 a.m. The person I support is incontinent and I assist 

him to clean his bedding and start his laundry. Then I 

have to process his food because he can’t eat solid food. 

When eating, he has to be watched at all times so he won’t 

choke on his food and aspirate. If staff are not trained on 

how to support him, he could aspirate and get pneumonia 

and die. After he eats, I prompt him to brush his teeth. I 

administer his medications. Afterwards, he cleans the 

bathroom. Then Itransport himto his daily activitiesin the 

community. He goes to the gym for a one-hour workout. 

Then I take him for lunch and coffee. At the restaurant, I 

have to process his food and thicken his drink to honey 

consistency so he won’t aspirate and choke. I guide him 

through stores; he is also blind. I have supported him for 

almost 14 years to adapt to his environment and to be as 

independent as possible. We head home and make dinner 

and again process food and thicken his drinks.I watch him 

eat so he won’t choke or aspirate. After, I assist him with 

completing breathing exercises to help prevent aspiration 

pneumonia I prompt him to brush his teeth and get ready 

for bed. I administer hismedications.

When he goes to bed at 8 p.m., his day is done but mine is 

not. I still have to document what I have done to support 

him throughout the day. I have to coordinate with doctors 

and make sure all his consents are up-to-date andthat his 

record is complete so that we comply with all licensing 

standards.

I do this all for $10 per hour.My nephew works at Walmart 

and makes $11 an hour, just to be a cashier.This does not 

make sense to me.Right now,I am working in two homes, 

traveling 50 miles a day because we don’t have enough 

staff to cover the support hours needed for everyone. I 

get pulled from home to home because all of our staff are 

leaving for other jobs that pay more. I am worried that the 

person I support will end up with inexperienced staff that

do not know his protocols and will give him solid food, 

not realizing that he could aspirate and possibly die.

The staff shortage is real. In the last few months I have 

had to work more and see less of my family to provide the 

support needed. I feel if there was an increase in pay, we 

would be able to keep staff and provide better support for 

everyone we support in the state of Maine.

—Randall Howard, DSP

wellness routines, dispense medications and implement 

significant treatments and medical intervention 

protocols. They take people to appointments with 

various health care and specialty providers and often 

play important roles in communicating with medical 

professionals about health-related observations and 

records. DSPs are integral to supporting overall wellbeing and prevention of costly acute care by identifying 

emerging signs and symptoms of illness or disease, 

encouraging healthy lifestyles, fostering connections to 

caring family and friends and monitoring changes in 

health status. DSPs may also provide daily living skills 

support, such as getting people out of bed, helping them 

bathe and get dressed, preparing meals and assisting 

people in feeding themselves. Many DSPs help people 

with an ID to communicate and to use complex assistive 

technology devices. Importantly, DSPs support people 

with an ID in finding and keeping jobs and working 

toward their personal career goals. They get people 

socially connected to and support their participation in 

recreation activities, education, cultural events, spiritual 

activities and civic functions. DSP job duties are diverse, 

ever-changing and based on each individual’s needs and 

abilities.

The role of a DSP is increasingly complex. The 

independent nature of the job requires significant skill, 

judgment, independent problem-solving and decisionmaking. Many DSPs work alone with a person with an ID in 

individual or family homes, small group homes, the 

community and employment settings. As such, they are 

often isolated and do not have co-workers, supervisors or 

clinical professionals (e.g., nurses or medical personnel, 

social workers, occupational therapists, physical 

therapists) on site to turn to for assistance or guidance. As 

the shift from congregate care to home- and family-based 

services continues, DSPs will take on ever-greater

responsibility and accountability. The nature, intensity and 

frequency of contact between DSPs and the people they 

support make their work different from the roles filled by 

clinicians, service coordinators, administrators and 

supervisors. DSPs spend a lot of time with the people they 

support, and this gives them a unique lens into the lives of 

such individuals.

In many ways, DSPs are interdisciplinary professionals. 

They have job duties that resemble aspects of many 

different professions. Like teachers, they develop and 

implement effective strategies to teach people new skills. 

Like nurses, they dispense medications, administer 

treatments, document care and communicate with 

medical professionals.
Report to the President 2017: America’s Direct Support Workforce Crisis 16

Figure 1. DSP Scope of Practice

Like various allied health professionals, they assess 

needs, implement specific treatment plans and 

document progress. Like social workers, they get people 

connected to community resources and benefits. Like 

counselors, they listen, reflect and offer suggestions. 

DSPs provide whatever support it takes so people can 

live and participate in their communities with greater 

independence and dignity.

COMPETENCIES NEEDED BY DIRECT SUPPORT 

PROFESSIONALS

Over the past 20 years (as indicated in Figure 2),

numerous sets of national and state DSP-specific

competencies have been identified and refined. Their 

development has included stakeholder input from service 

recipients, family members, DSPs, supervisors and agency 

administrators, as well as the use of validation processes. 

Modifications have been made over time to reflect 

needed attention to self-direction (people with ID making 

decisions about their own services, related budgets and

Figure 2. Direct Support Professional competency sets over time

JOANNE MURRAY, DIRECT SUPPORT PROFESSIONAL – CERTIFIED AT LEVEL 1 BY NADSP

Joanne Murray is a 30-year veteran in providing direct 

support to adults with developmental disabilities. She 

chose “vocational support” as an area to illustrate her 

DSP competence and skill. Joanne has worked with 

Vicki for 30 years. Vicki is a 96-year-old woman with 

intellectual disability who, for most of her life, has

had a passion for making jewelry. Joanne saw that 

Vicki had great potential in jewelry design and 

could probably make jewelry to sell for profit.

Vicki had recently “aged-out” of a sheltered workshop 

where she made a modest income. Vicki was unhappy 

about this, but Joanne had the idea to transformVicki’s 

love of jewelry making into an income-producing

vocation. Joanne and Vicki went on a learning journey 

together over the course of a year. Together, they 

designed business cards, created a catalog of jewelry 

designs, launched an advertising campaign in their 

local area and ultimately produced a plethora of “real” 

jewelry (made from authentic metal and gemstones).

Vicki was supported and encouraged by a highly 

skilled DSP to pursue an actual business as an artist 

and entrepreneur. Vicki started selling her beautiful 

works and is about to launch a business website.
President’s Committee for People with Intellectual Disabilities 17

Figure 3. New York Career Gear Up credential model and framework

staffing) and the important role DSPs play in supporting

people in developing and maintaining relationships.

DIRECT SUPPORT PROFESSIONAL TRAINING 

AND CAREER PREPARATION

Direct Support Professionals need training to gain the 

knowledge, skills and attitudes required of their roles. 

Unfortunately, widespread, well-funded systems of training 

and support do not exist for DSPs. Federal regulations are 

largely silent about the pre-service and in-service training 

necessary for DSPs to provide quality community support 

to people with ID. Some states require that employers 

provide a minimal number of pre-service training hours 

(often around 40), but these regulations rarely are 

competency based; instead they focus on topics or basic 

skills that must be taught within a certain number of hours 

post-hire (e.g., CPR, first aid, documentation, bloodborne 

pathogens) and at regular intervals after hire.

Source: Hewitt et al, 2015

It is often difficult for service-providing agencies to offer

complete courses of training to their DSPs because of 

the following realities: (1) reimbursement rates that 

cover little more than personnel costs, (2) the dispersal 

of DSPs across many work sites and the centralized 

location of training, (3) the widely varying hours worked 

by DSPs and the difficulty of finding convenient times for 

training, and (4) the high rate of DSP position vacancies, 

making it difficult to cover work shifts while DSPs attend 

training. A recent statewide provider survey in New York 

found that DSPs received an average of 50 pre-service 

training hours, only half of the 100 hours required by 

the state, and an average of 33 hours in subsequent 

years (Hewitt et al., 2015). Yet, a series of focus groups 

conducted during this same study indicated that DSPs 

are anxious to learn more, develop skills and continue 

their careers in the field. More information about these 

findings and the recommendations from New York can 

be found in Appendix D.

NIKEETA SMITH, DIRECT SUPPORT PROFESSIONAL – CERTIFIED AT LEVEL 1 BY NADSP

Nikeeta is a DSP who has worked for four years in a 

group home that supports people with disabilities. She 

supports LaToya, a woman with intellectual disability 

and limited verbal communication skills.

LaToya often uses physical aggression (e.g., hitting, 

head butting, kicking) to communicate her feelings. 

This can be a difficult way to get one’s message across, 

and Nikeeta assessed the need for LaToya to learn more 

appropriate methods. To help LaToya with this, Nikeeta 

spent many hours assembling communication books 

and visual aids, learned sign language and even used an 

electronic tablet in order to devise ways in which she 

and others could best communicate with LaToya. Over 

the course of approximately a year, LaToya’s

challenging

behavior diminished and she was more comfortably 

able to shop, dine out and live with her roommates.

Prior to Nikeeta’s tenure, no staff had taken the initiative 

to spend time with LaToya. Many found her too 

aggressive and did not have the patience or will to assist 

her in developing better communication skills. Nikeeta 

had gone through the College of Direct Support online 

learning program and participated in the NADSP 

certification initiative sponsored by her employer.

Nikeeta’s newfound insights and knowledge prompted 

her to work closely with LaToya to open up newhorizons 

of communication and relationships for a woman who 

might otherwise have remained neither understood nor 

respected. Nikeeta made sure this wasn’t thecase.
Report to the President 2017: America’s Direct Support Workforce Crisis 18

In contrast to the typically less specific and demanding preservice training required of DSPs, there is a 75-hour preservice educational requirement for Nursing Assistants and 

Home Health Aides (Marquand, 2013). This training 

requirement has resulted in most community/technical 

colleges in the U.S. having pre-service training programs for 

these occupational titles. However, these programs are not 

required for nor aligned with the training needs of DSPs.

The Certified Nursing Assistant (CNA) and Home Health Aide 

(HHA) training programs emphasize physical health and a 

“medical model,” and are less comprehensive than the 

training needed by DSPs to provide home and communitybased supports. While DSPs need the skills required of a CNA 

and an HHA to support people with health, self-care and 

home-living needs, they require much more training focused 

on supporting independence, learning new skills and teaching 

people with an ID how to make informed decisions about 

their own lives, community living and social participation.

DSPs have all the duties and responsibilities of caregiving 

occupations, but their role is much more focused on being 

community navigators. As such, their training and career 

development needs should be focused much more on a 

social model (civil rights and social justice) than on a medical 

model (treat and cure) of disability. Despite these clear 

differences, CNAs and HHAs often benefit from higher wages 

and increased visibility due to the credentialed nature of 

their work.

While certification or credentialing programs similar to those

for CNAs do not existwidely forDSPs, examples of promising 

practices do (e.g., National Alliance for Direct Support 

Professionals national credential, Ohio Alliance for Direct 

Support Professionals state-level credential and many 

organization-level credentialingprograms). Attainment of 

certifications through credentialing is one way to improve the

quality of care; itis also likely to contribute to higher levels of 

professionalism, increased occupational pride, improved work 

performance, higher job satisfaction and reduced injuries for 

DSPs and the people they support. Employees who complete 

rigorous credential programs may stay on the job longer and 

provide a higher quality of support (Bogenshutz, Nord, & 

Hewitt, 2015). Credentialing has the potential to justify 

improved compensation for DSPs and to establish recognition 

and career pathways in an occupation that historically has 

been undervalued. Widely accessible credentialing and 

training programs specific to the role of DSPs are needed 

throughout the community college system in the U.S.

RELIANCE ON DIRECT SUPPORT 

PROFESSIONALS FOR QUALITY OUTCOMES

Service systems that expect quality outcomes in 

exchange for public investment in them must rely on 

DSPs to deliver system-and individual-level outcomes. 

The connection between quality in long-term Home and 

Community-Based Services (HCBS) and the direct 

support workforce was recently identified by the 

National Quality Forum (2016). In their newly developed 

quality framework, the direct support workforce was 

identified as a quality domain. Aspects of workforce 

quality include these:

1. DSPs have a person-centered approach to 

services;

2. DSPs have demonstratedcompetencies;

3. the organization and state ensure safety and 

respect for the worker;

4. there are sufficient workforce numbers, 

dispersion and availability;

5. DSPs are adequately compensated with 

benefits;

6. DSPs are culturally competent; and

7. DSPs are engaged and participate in the 

organization and system.

An increasing number of states are paying attention to 

the need to know more about their direct support 

workforce. As a result, National Core Indicators (NCI) 

created a staff stability survey, which is currently being 

used in 19 states and obtains information about turnover 

and vacancy rates as predictors of individual outcomes 

(see Figure 5, p. 21).

DIRECT SUPPORT WORKFORCE AND 

THE U.S. ECONOMY

The direct support workforce promotes participation in the 

U.S. economy in two ways: (1) by helping people with an ID 

get jobs and (2) by enabling family membersto work. A 

national priority identified in the Workforce Innovation and 

Opportunity Act (2014) is to increase employment among 

people with an ID. Given the low number of people with 

ID/DD currently employed in competitive community jobs 

(only about 16 percent), andthe slow growth in that 

number, DSPs are needed who can help increase that 

number by effectively supporting people in finding and 

keeping paid competitive employment. Another major
President’s Committee for People with Intellectual Disabilities 19

contribution DSPs make to our communities is to support 

families so that members (e.g., parents, siblings and 

extended-family members) are able to work and maintain 

their careers and businesses. When inconsistent support is 

provided for their loved one with an ID, it is difficult for a 

family member to maintain employment, accept promotions

and establish a career. When consistent and quality 

support is available from DSPs, family members

are more likely to participate in employment, work 

more hours and accept promotions and additional 

responsibilities, all generating tax revenue and reducing 

reliance on public benefits.

PERVASIVE WORKFORCE CHALLENGES RESULT IN CRISIS

The matters of availability, skills and sufficiency among 

Direct Support Professionals (DSPs) present a growing 

public health concern. The following factors affect this 

workforce crisis: (1) the projected increase in demand 

for DSPs to support the rapidly growing number of 

people with disabilities, driven primarily by growth in 

the elderly population; (2) the nature of the supports 

provided by DSPs, which are essential to health, safety 

and overall well-being; and (3) the persistent, 

substandard work conditions and rewards that

undermine the ability to recruit and retain DSPs 

(Hewitt et al., 2008). Substantial investments in 

community-based long-term services and supports 

(LTSS) are urgently needed in order to avert a public 

health crisis by supporting recruitment, sustaining 

experienced DSPs and providing adequate pre-service 

preparation and in-service training to ensure quality in 

the services provided.

WAGES AND BENEFITS

The national average wage for DSPs is $10.72 per hour 

(Hiersteiner, 2016). As shown in Figure 4, adjusting for 

inflation, this workforce has actually seen their wages 

decline over time (PHI, 2015). At $10.72, the average DSP 

who works full time makes below the federal poverty level 

for a family of four (HHS, 2015). Many, but not all, 

organizations provide health insurance and paid time off to 

DSPs (e.g., Hewitt et al., 2015). Often part-time workers 

have no paid benefits. Almost half of DSPs receive publicly 

funded benefits, such as medical, food or housing 

assistance (PHI, 2017). Most DSPs work a second (or third) 

job to earn enough money to pay their bills (Test et al., 

2003). Perpetually low wages and limited benefits 

ultimately make it difficult to recruit and retain DSPs. Most 

DSPs who leave the profession do so not because of the 

nature of the work, but because they cannot support their 

families on the available wages.

Figure 4. Direct support wages over time, 2005–2015
Report to the President 2017: America’s Direct Support Workforce Crisis 20

HIGH TURNOVER AND VACANCY RATES

A high turnover rate is well documented in the DSP 

workforce (Bogenshutz et al., 2014; Braddock & 

Mitchell, 1992; Larson, Lakin & Bruininks, 1998; Larson 

et al, 2005; ANCOR, 2010; Hewitt et al., 2015). 

Nationally, the average annual turnover for DSP 

positions is an estimated 45 percent, with a range of 

18–76 percent (Hiersteiner, 2016). About 35 percent of 

DSPs leave their positions in less than six months, and 

approximately 22 percent leave within 6–12 months.

As a point of comparison, across all industries, as 

reported by BLS (2017), the national average

separation (turnover) rate is 3.5 percent. The 

magnitude of this workforce issue is hardly seen in any 

other industry, thus making running an efficient and 

effective direct support business nearly impossible. 

The costs of replacing a DSP in ID/DD services have 

been reported to be between $2,413 and $5,200 

(Hewitt & Larson, 2007; ANCOR, 2010; Medisked Connect, 

2016). The aggregated cost is substantial; in New York 

State alone, the cost of replacing DSP workers using an 

average cost per person of $4,073 was estimated at 

$79,804,549 in 2015 (Hewitt et al., 2015). Nationally, 

these costs are estimated at $2,338,716,600.

Vacancy rates are another indicator of workforce 

insufficiency. Current vacancy rates within LTSS for 

people with ID/DD are more than 9 percent (Hewitt et 

al., 2015; Hiersteiner, 2016). This means that 9 percent

of all available positions go unfilled. Vacancy rates are 

created by service growth resulting from increased 

need and demand, as well as high DSP turnover.

Unfilled positions undermine the quality of care, 

overburden DSPs remaining on the job and are a clear

symbol of the crisis of providing sufficient numbers of 

DSPs to meet the needs of persons with ID/DD and 

their families.

CONSEQUENCES OF THE DIRECT SUPPORT WORKFORCE CRISIS

The Direct Support Professional (DSP) workforce crisis 

results in substantial negative and lasting effects that 

diminish quality of service, reduce progress toward 

individual goals and harm individuals. To emphasize 

the nature of these consequences, stories from people 

with an ID, their families, DSPs and organizations are 

included throughout this Report. These stories provide 

a vivid picture of the effects of the growing workforce 

crisis on people with an ID who receive services, 

families, direct support professionals and 

organizations.

EFFECT OF THE WORKFORCE CRISIS ON 

INDIVIDUALS WITH INTELLECTUAL AND 

DEVELOPMENTAL DISABILITIES

The current workforce crisis threatens the health, safety and 

well-being of people with ID/DD. DSPs who are tired from 

working long hours or multiple jobs are much more likely to 

make mistakes and have lower tolerance for stressful 

situations. When DSPs do not know the person for whom 

they are providing support, they may not recognize signs 

and symptoms of illness. The consequences of the direct 

support turnover and vacancy rate impact the independence 

and opportunities experienced by people supported. When 

organizations cannot find staff to support people in more 

integrated and individualized community homes and job 

sites, people with an ID must often rely more on congregate 

models, such as group homes or sheltered work settings. 

Ensuring that people with an ID can experience all that 

communities have to offer depends on consistent, 

dependable, skilled support provided by a stable, wellprepared DSP workforce.

EFFECT OF THE WORKFORCE CRISIS 

ON FAMILIES

The impact of the workforce crisis is also evident in the 

lives and well-being of family members. Being able to 

entrust loved ones to skilled, committed and well-known 

support providers is vitally important in order for family 

members to maintain employment and engage in 

community outside the family. In the National Health 

Interview Survey – Disability Supplement of 1994–1995, 

53 percent of parents interviewed reported major career 

concessions (e.g., not taking a job, working fewer hours, 

dropping out of the workforce, turning down a 

promotion) related to having a child with ID/DD 

(Anderson et al., 2002). Another concern is that families 

and individuals have to get to know a new DSP every 

time one enters their life. This can cause frustration 

because they have to train so many staff eachyear.
President’s Committee for People with Intellectual Disabilities 21

Figure 5. A summary of National Core Indicator Staff Stability key statistics

“Living on my own hasn’t always been easy. I’ve had my fair share of direct support 

professionals who took advantage of me because literally depended on them in order to 

live . . . I’ve been placed in unsafe situations, disappointed by being unable to go 

somewhere with family and friends and forced to overlook things that people without 

disabilities would never consider.” —Ed Bartz
Report to the President 2017: America’s Direct Support Workforce Crisis 22

ORGANIZATIONAL PROFILE UCP 

SEGUIN SERVICES, ILLINOIS

Organization, size, scope, and length of 

time in business.

Established in 1976, UCP Seguin believes that all people, 

regardless of ability, deserve to achieve their potential, 

advance their independence, and live as full members of 

the community. We provide life skillstraining, assistive 

technology, meaningful employment, and a place to call 

home for people with disabilities, as well as specialized 

foster care for children. Our goal: life without limits for 

people with disabilities.

UCP Seguin took root in 1949 when a group of 

parents in the western suburbs of Chicago began 

providing day school classes for their children in a 

church basement – the first pilot program for 

community-based special education in Illinois.

From this early alliance evolved Mentally Retarded 

Children’s Aid, which transferred all programs to Seguin 

Services, Inc., in the mid-1970s. Granted 501(c)(3) 

status in April 1977, Seguin was one of the first agencies 

in Illinois to establish community-based employment 

and group homes for adults with disabilities and 

specialized foster care for children with disabilities.

On July 9, 2013, United Cerebral Palsy of Greater 

Chicago merged with Seguin to become UCP Seguin, 

which now serves an unduplicated total of more than 

24,000 persons with disabilities each year.

Current DSP vacancy and turnover rates.

We currently have nearly 160 vacancies among 800 

positions, equaling a 20 percent vacancy rate. 

Residential Services and Day Services – two of the most 

critical service and support departments – have been

the hardest hit, with 115 of the 160 vacancies. During 

the most recent reporting, the year-to-date turnover 

was 24.7 percent.

Current wages and benefits.

The average hourly wage paid to DSPs between July 1, 

2016, and December 31, 2016, was $11.80 per hour, 

which includes overtime paid. This pay is comparable 

to other nonprofit ID/DD service providers.

The City of Chicago’s minimum wage is $10.50 per hour, 

rising to $11 per hour on July 1, 2017, and $13 per hour 

on July 1, 2019. This severely impacts the ability of 

suburban providers to recruit employees who are able to 

work within the city limits at a higher wage. There is an 

effort to work with the City of Chicago to get a release 

from the minimum wage requirements for nonprofit 

organizations since this wage requirement adds further 

financial distress to already stretched budgets.

Though UCP Seguin provides many benefits (e.g., 

medical, dental, vision, flexible spending accounts), DSPs 

regularly rely on public benefits of medical coverage for 

their dependent children, vouchers for care for their 

children, Section 8 housing vouchers and other benefits. 

Many DSPs have made tough decisions to work limited 

hours and/or forgo promotions in order to avoid losing 

these public benefits.

Biggest workforce challenges.

Overtime costs and an inability to hire competent staff 

are draining financial resources, and this, combined with 

a 4.7 percent national unemployment rate, impacts 

negatively on staff recruitment and retention and is an 

extreme challenge affecting delivery of services to the 

people we support. The safety and well-being of the 

people we support is compromised by the vacancy rates 

of 20 percent ormore.

We are no longer able to accept referrals of individuals 

who at present have higher support needs (e.g., health 

or behavioral). Even with added funding, we are unable 

to recruit the staff at current reimbursement rates to 

provide needed support services and have to turn away 

referrals.

Risks related to the workforce crisis. With the low 

unemployment rate and the lack of state and federal funds 

to support higher wages, community organizations serving 

people with developmental disabilities face a major crisis: 

recruiting, hiring and retaining capable direct support 

staff. We need more dedicated individuals who believe in 

our mission. We need an infusion of additional dollars to 

support these staff in performing their mission-driven 

duties.
President’s Committee for People with Intellectual Disabilities 23

ORGANIZATIONAL PROFILE

STONE BELT ARC, INCORPORATED - BLOOMINGTON, INDIANA

Organization, size, scope, and length of 

time in business.

Stone Belt Arc, Inc., is a nonprofit disabilities service 

provider in south central Indiana, headquartered in 

Bloomington. We serve about 1,600 people with ID/DD 

annually and have a staff of about 500 (when all 

positions are filled). Our annual budget is about $18M 

with about 90 percent of that being Medicaid funded. 

We were incorporated in 1959. Our services include 

employment, adult education (facility- and communitybased), residential services, psychiatry, therapy, behavior 

supports and facility-based work services.

Current vacancy and turnover rates.

Stone Belt’s current vacancy rate is 13 percent, and 

our current turnover rate is 33.4 percent.

Current wages and benefits.

Our starting salary for DSPs is $9 per hour, though 

anyone with experience comes in higher than that. We 

have health insurance for full-time staff, and we recently 

were able to add a 2 percent match on the 401(k)-

retirement program. We have a fairly generous paid time 

off program and observe eight paid holidays. We have 

been competitive with similar service providers, though 

most have been pushing wages up a bit, so we are 

probably starting to fall behind.

Numerous Stone Belt staff rely on HIP [Healthy Indiana 

Plan, an affordable health insurance plan for adults] for 

their personal health insurance as they cannot afford 

coverage even through our agency’s plan or marketplace. 

They also rely on Hoosier Healthwise for their children’s 

health insurance; SNAP for food stamps, along with local 

food banks and charities that provide free food; and HUD 

income-contingent affordable housing. Staff also often 

request help from city and county support funds to assist 

in paying utilities.

Biggest workforce challenges.

Indiana University and the hospital – the two largest 

employers in the area – have minimum wages of

$10 per hour. This has reduced the number of students 

who apply [to work at Stone Belt], as well as tightening 

the general employee pool. As with many similar 

businesses, the high turnover rate and difficulty with 

recruitment require extensive administrative resources. 

The employee pool is generally not as qualified as it was 

in years past, and we find we have had to accept 

applicants that we would not have considered in the 

past. This creates other issues, such as longer training, 

less dependability, lack of engagement/commitment to 

the mission and so forth. If we had enough staff, we 

could provide support to many new people. We don’t 

officially have a “waiting list,” but we cannot readily 

admit new clients – some have to wait for us to get to 

them.

Risks related to the workforce crisis. Employee 

behavior is a concern, especially with the rise in illicit 

drug use. Employee honesty is also a concern, and we 

worry that the people with ID/DD we support are at 

more risk of abuse and exploitation. The lower 

professionalism level may also impact the community 

perception of our agency. Operating programs at less 

than full staffing also puts people supported at risk for 

their health and safety. There are also lost-opportunity 

costs. Individuals with ID/DD and their families will go 

to the provider that can admit them the most quickly. 

This doesn’t always meet their best interests.
Report to the President 2017: America’s Direct Support Workforce Crisis 24

EFFECT OF THE WORKFORCE CRISIS ON 

DIRECT SUPPORT PROFESSIONALS

The lack of consistent care is evident in countless stories 

from family members. Many families find that they can 

prepare, plan for and execute plans for their family 

member with an ID to live independently with support, 

only to face the reality of their family member having to 

move back home shortly after moving out because 

consistent direct support could not be maintained. Other 

family members report they have never been on a 

vacation together and find it extremely hard to get any 

respite from their responsibilities of supporting their 

family member. This causes stress, health issues, burnout 

and, ultimately, added societal costs.

Despite earning low wages and working long hours, 

many DSPs remain in this work as long as they can 

afford to because they love it and they recognize the 

importance of their jobs. Watching the small steps, and 

sometimes the very notable progress, that people with 

an ID make toward independence and personal 

satisfaction is highly motivating to most DSPs. Certainly 

this is driven by personal values rather than by any 

hopes for lofty economic benefit. DSPs typically find 

their highest motivation in their relationships with the 

people they support. When a personal connection and 

commitment are made, progress often follows. Yet, high 

turnover rates, DSPs being overworked and the

“Even though I’m working extra hours and

doing meaningful work, I am still always 

behind on household bills and am unable 

to keep our car running. What’s even 

worse, no matter how frugal we are and

how hard we work supporting people with 

disabilities [so they can] live their lives, my 

wife and I find it difficult to provide 

extracurricular opportunities for our three 

kids. My wife is a preschool teacher at a 

low-income school. She is also in a

‘helping’ profession that is just as 

devalued and underpaid as direct support. 

It is shameful that in our society, important 

careers that support people with 

disabilities to achieve a decent quality of 

life are so underpaid.”

—Adam D. Braun, DSP-C1,

Dallas, Oregon

“Despite our best efforts to create a wonderful 

life for our son, we know it could crumble in 

a moment.Everything, absolutely everything, 

depends upon the stability and quality of his

support staff. In our state of Pennsylvania, DSPs are 

being paid wages that are 25–50 percent below a 

living wage, and they have not had an increase in 

over 10 years. Many work two or three jobs, and 

nearly half are dependent on public benefits. Until 

recently, there were no nationally validated 

competencies for DSPs, no common professional 

code of ethics, no career ladder and, sadly, little 

recognition for the important work they do. Our 

son’s DSPs deserve more. As my husband and I 

approach our seventies, we need to feel we are 

fulfilling our responsibility to provide a safe and 

secure future for our son. We’re doing all we 

possibly can.”

—Cheryl Dougan, mother of a 33-year-old

man living and working in the community in

Bethlehem, PA
President’s Committee for People with Intellectual Disabilities 25

economic stresses of employment can undermine such 

trusting relationships between DSPs providing support 

and the people receiving it.

Many DSPs are able to stay in their jobs only by working 

two or three jobs and up to 80 hours a week to have 

enough income to put food on their tables. These 

demands put DSPs and the people they support at 

greater risk because the DSPs are tired, potentially less 

alert and more susceptible to error while working. In the 

U.S., workers often feel value, respect and status based 

on their rate of pay; however, DSPs’ wages are so low 

that they do not bring forth the sense of value and 

respect this highly skilled profession deserves.

EFFECT OF THE WORKFORCE CRISIS ON 

ORGANIZATIONS AND BUSINESSES THAT 

EMPLOY DIRECT SUPPORT PROFESSIONALS

Organizations face real challenges in addressing the 

current workforce crisis. Unlike most businesses, 

providers in this industry cannot simply increase their 

fees to pay their staff more. Delivery of long-term 

services and supports happens under a ceiling of funding 

that is dependent on state legislative actions. The costs 

and wasted resources of such high rates of turnover over 

decades have serious consequences for businesses that 

employ DSPs: does this work as a means of getting rich. 

These individuals that truly care about people and want 

to.

Changes in recruitment pool qualifications and 

experience. A 45 percent annual turnover rate is 

debilitating in any industry. The relatively low 

unemployment rate across industries since the Great 

Recession has negatively impacted staff stability and the 

ability to meet the demand for services. Organizations 

cannot find enough qualified individuals to fill positions. A 

tightening pool of potential employees, along with 

greater competition from other businesses and industries 

that pay more competitive wages, results in businesses 

being forced to consider applicants they would not have 

previously considered. A fallout of this “lowering of the 

bar” is that service agencies experience less dependability 

among DSPs, and they see an increase in disturbing 

workplace behavior among some employees (e.g., theft, 

illicit drug use, neglect, poor decision-making).

Business acumen challenges. It is difficult for serviceproviding agencies to use effective business acumen 

when they are focused on replacing nearly half of their

“It is hard to watch the effect that high turnover 

has on the people that we support. So many 

Direct Support Professionals that I’ve known 

over the last eight years are leaving jobs that they 

love because of low wages and the inability to 

support their own families. It makes it even 

harder for those of us who continue in the job to 

properly support the people when we are 

understaffed and unable to find good people for 

these really important jobs.”

—Adam D. Braun, Partnerships in Community

Living, Dallas, Oregon

“I support many DSPs in a supervisory role. I am 

regularly informed of the financial burdens they 

carry. Many are trying to manage a family, home 

and safe transportation with their very low-level 

wages. Many have student loans and/or medical 

challenges of their own they are trying to balance. 

Nobody does this work as a means of getting rich. 

These are individuals that truly care about people 

and want to give back in a meaningful way. More 

often than not people are being faced with the 

difficult decision of having to choose a betterpaying position versus one that they have a heart 

for. Because they have to consider their families 

and their livelihood, they must move on, and this 

contributes dramatically to our current workforce 

shortage.”

—Michelle Paige-Buttoli

“One [parent] goes away while the other stands 

by for a week. The next week, the other spouse 

takes their vacation. We would love to take a 

vacation together.”

—Parks family
Report to the President 2017: America’s Direct Support Workforce Crisis 26

workforce each year. Their attention is mostly on hiring 

and getting new people into vacant positions, as opposed 

to developing the other half of their workforce that 

wants to stay in the profession. Supervisors and 

managers devote most of their attention to new hires, 

even as they recognize they are neglecting the support 

and development of the organization’s most valuable 

employees. Supervisors also spend large percentages of 

their time working direct support shifts themselves, 

which leaves less time for them to actually supervise 

their employees. Additionally, supervisors report that the 

time they do have available to support their DSP 

employees is often spent on problem-solving in regard to 

difficult life situations caused by poverty and related 

stress.

Financial costs and wasted resources. The role of the 

DSP is complex. The skills of DSPs, as in most 

professional roles, accumulate and are refined over 

time. High levels of instability within a workforce 

require substantial ongoing investments in 

recruitment and training of staff. In addition to the 

replacement costs of recruiting and selecting new 

employees, high levels of staff instability require 

substantial payouts of overtime as current DSPs fill in 

for DSPs who vacate positions. In New York State 

alone, on average, organizations across that state

paid for 2,541 hours of overtime in a 30-day period 

during 2014. Total estimated annual overtime 

expenditures were $206,276,508 (Hewitt et al., 2015).

Risks for and the high cost of injuries. DSPs perform 

jobs that place them at risk for injury. Many DSPs 

provide support by positioning, lifting or transferring 

people who are unable to do thesetasks independently.

DSPs may also mediate emotional or behavior 

challenges, which can result in injury. According to the 

Bureau of Labor Statistics (2016), among all 

occupational categories, nursing assistants had the 

fourth-greatest number of occupational injuries and 

illnesses per year requiring days away from work. Their 

rate of significant injuries and illnesses was exceeded 

only by law enforcement, correctional officers and 

firefighters. This risk is seen in the high cost of worker 

compensation insurance premiums paid by DSP 

employers based on the actual claims experience of 

insurance companies. The multiple locations and 

circumstances inwhich human service provider 

agencies place DSPs often make it more difficult to 

institute programs and policies that control injuries, 

thus resulting in increased rates (Hutcherson, 2017).

EFFECT OF THE WORKFORCE CRISIS ON OUR 

COMMUNITIES AND THE ECONOMY

This workforce crisis has a multifaceted impact on the 

community. When there are not enough staff, and 

when those who are present are not well trained, the 

people they support use more of the community’s 

police, ambulance, firefighter, emergency 

department, acute care and other resources. 

Availability of more experienced and better-trained 

DSPs could reduce this cost to communities. 

Additionally, given that nearlyhalf of all DSPs use 

some form of government-funded, means-tested 

public assistance, the current crisis’ foundation in 

low-wage, limited-advancement employment results 

in communities and taxpayers picking up the costs of 

income replacement supports for health care, 

housing, food, child care and other necessities.

FACTORS INFLUENCING THE CRISIS

Over the last 20 years, the conditions of concern 

identified by Congress in their enactment of the DD Act 

(Public Law 106-402) have worsened into what is now 

considered by all industry stakeholders to be a national 

workforce crisis. At the heart of this threat is the 

increasing difficulty of securing and sustaining a direct 

support workforce of sufficient size and quality to meet 

needs of people with an ID. The following factors have 

the greatest impact: (1) growth in the number of people 

with ID/DD who need and receive services, (2) major 

shifts in the type of services desired and delivered to 

people with ID, (3) steadily increasing longevity of people 

with ID/ DD, (4) changing U.S. population demographics,

(5) changes in the overall U.S. labor force and economy 

and, above all, (6) the failure to create an occupation of 

direct support with sufficient pay, benefits, training, 

career trajectories and status to recruit and retain a 

stable, skilled workforce to deliver on the promises 

made.
President’s Committee for People with Intellectual Disabilities 27

GROWTH IN THE NUMBER OF PEOPLE WITH 

ID/DD WHO NEED AND RECEIVE SERVICES 

AND RELATED INVESTMENTS

Between June 1991 and June 2014, the total number of 

individuals served under the auspices of state ID/DD 

service agencies increased by nearly four times (390

percent), from 289,370 to 1,128,530. In 2015, total 

spending for ID/DD services and supports reached $65.21 

billion, a growth of 4.1 percent from FY 2013–2015 (see 

Figure 6). As a result of the Great Recession, state/local

funding declined 4.9 percent between 2009 and 2010, 

which was counter-balanced by “enhanced” Federal 

Medical Assistance Percentage (FMAP) rates. In 2011, 

the U.S. experienced the first reduction in total ID/DD 

spending, dropping 0.8 percent to $60.2 billion.

MAJOR SHIFTS IN THE SERVICE SYSTEM

The growth in services delivered represents not only 

increased numbers of people with ID/DD who receive 

services but also steady changes in the types of 

services they receive, which influences the workforce 

crisis. Over the past two decades, as children 

educated in more inclusive school settings have grown 

up, they (and their families) expect to live and be included 

in their communities. These changing expectations and 

our commitments to them have resulted in people 

receiving increasingly individualized services and supports 

in their homes and community instead of in congregate 

care facilities.

Where people with ID/DD live. Of the people with ID/DD 

known to state agencies, 1,170,190 receive some type of 

Medicaid-funded long-term residential support. These 

services support people in family homes, their own 

homes or group settings of varied sizes (1–6, 7–15 and 

16+). As Figure 7 indicates, the majority of people with 

ID/DD who receive services get them in their family 

home, and the smallest portion receives them in larger 

settings where 16 or more people live.

Where people with ID/DD spend their days and are 

employed. People with ID/DD also receive LTSS that 

provide them with employment and daytime activity. 

While most people with ID/DD want to participate in 

integrated community employment, the majority are not 

doing so (Butterworth et al., 2015); only about 16

percent of people with ID/DD have paid integrated 

employment in community jobs.

Figure 6. ID/DD expenditures over time, 1977–2015

.
Report to the President 2017: America’s Direct Support Workforce Crisis 28

As indicated in Figure 8, there was tremendous growth 

in the number of people receiving daytime non-work 

and employment services between 1990, when 314,488 

people were supported by DSPs, and 2015, when 

610,188 people were supported. However, the 

overwhelming majority participate in non-work activities 

(e.g., volunteer work, community engagement, 

entertainment) or facility-based (“sheltered”) 

employment. To increase integrated employment for 

people with ID/DD, sufficient numbers of well-trained 

DSPs must be available.

Changing expectations toward more person-centered 

supports. Over the past several decades, rapid 

deinstitutionalization and community integration of 

people with ID/DD have resulted in remarkable systems 

transformation. In decadespast, DSPs were much more 

likely to work in relatively large residential settings in 

which university-trained professionals and other 

experienced personnel (e.g., nurses, therapists, 

psychologists, social workers) were likely to be on-site. As 

individuals with an ID and their families have sought more 

physically and socially integrated lifestyles, DSPs are 

expected to accommodate these changes by working 

muchmore independently and responsibly. They are 

calledon to support the aspirations of individuals to be 

more fully integrated in their communities through social,

recreational and employment roles. It is difficult to 

overstate the extent to which the rapid shift from 

congregate care to home- and family-based services has 

demanded not only increased skill, but also increased 

sophistication and flexibility, on the part of DSPs. 

Increasingly, the focus of LTSS is on providing 

personalized services with a strong commitment to 

greater independence by providing individuals with an ID 

just what they need when they need it.

States and the provider organizations that employ DSPs 

have responded quickly to demands and the desire for 

more person-centered supports. For example, in the 

decade between 2003 and 2013, the average annual 

cost per person of providing Medicaid-funded LTSS 

increased only from $50,237 to $52,999, which in 

inflation-adjusted dollars represented a 16.7 percent

decrease in per-person costs (Anderson et al., 2015; 

Lakin, et al., 2004). But the economic and social 

benefits of shifts in DSP roles have yielded little benefit

to DSPs in terms of wages and benefits. Rather, the 

economic gains associated with such increased 

productivity have been used to provide services (albeit 

not fully) to the steadily growing number of individuals 

with ID seeking and needing community-based services 

and supports.

Figure 7. Living settings of people with ID/DD

Source: Residential Information Systems Project (2017), Research and Training Center on Community Living, University of Minnesota
President’s Committee for People with Intellectual Disabilities 29

Figure 8. Types of employment and day services received by people with ID/DD

Source: StateData.info (2016), Institute on Community Inclusion, University of Massachusetts-Boston.

PEOPLE WITH ID/DD LIVE LONGER

One of the most positive and celebrated reasons for 

the high demand of Direct Support Professionals is 

that the life expectancy for individuals with ID/DD 

has increased from an average of 19 years in the 

1930s to 66 years today (Coppus, 2013). There are 

many reasons for this, including (a) advances in 

medicine, (b) improved healthcare, (c) better 

nutrition, (d) decreases in institutionalization and (e) 

the inclusion of people with ID/DD in society. 

Although the severity of a person’s disability, certain 

genetic conditions, mobility impairments and having 

feeding difficulties are all associated with shorter 

average life expectancies, all subpopulations of 

persons with ID/DD are living longer. Today, people 

with mild intellectual disabilities have life 

expectancies similar to the general population (74 

years).

Many people with ID/DD require lifelong support and in 

some cases 24-hour supervision. As people with ID/DD live 

longer, the total number of service-years they will require 

increases. This creates additional demand for DSPs.

CHANGING DEMOGRAPHICS IN 

THE UNITED STATES

The population demographics in the United States are 

changing and significantly influencing the direct 

support workforce crisis by creating competition for

employees between populations with needs and by 

reducing the number of new entrants into the

workforce.

Aging of Americans. In 2014 there were 46.2 million 

Americans 65 years or older, making them roughly 15

percent of the U.S. population (one in every seven 

people). This number is expected to double by 2060, to 

approximately 98 million (ACL, 2017). Among this 

demographic, roughly 30 percent of those who live in 

the community report having difficulty with activities of 

daily living (ADLs), and 95 percent of those who receive 

institutional care report needing such support. The 

growth of the older American population places added 

demand on the labor force and increases competition 

for potential workers between older Americans and 

Americans with ID/DD (ACL, 2017).

Fewer younger Americans. The number of people age 

16+ entering the workforce is not keeping pace with the 

increased demand for LTSS to serve the aging U.S. 

population. While the labor force will likely grow over 

the next decade, it will do so at a slow average annual 

rate of 0.5 percent. It is projected that only 18,498,000 

youth/young adults age 16–24 and 104,697,000 adults 

age 25–54 will enter the workforce in 2020, representing 

a projected decline since 1994 of 13 percent and 4

percent respectively. Many demographic factors are 

influencing this decline, including a slower growth rate in 

our overall population, more of the U.S. population 

entering retirement years and an overall decrease in the
Report to the President 2017: America’s Direct Support Workforce Crisis 30

Figure 9. Workforce conditions that deter entry into the profession

percentage of the population participating in the labor 

force.

These projected changes create competition for workers 

across all industries. One cannot go shopping or watch 

the news without seeing clear signs that employers all 

over the U.S. are looking for new workers and are 

competing by offering higher wages. The high level of 

accountability, job stresses and round-the-clock, 365

days a year nature of DSP work, coupled with low wages

and poor benefits, do not make the field enticing for most 

new workforce entrants. The rapidly growing demand for 

employees to support older adults outstrips the demand 

for workers to support persons with an ID. This increased 

demand is occurring in an economy in which 80 percent

of all U.S. jobs are in service sectors. As the number of 

new entrants into the workforce fails to keep pace with

demand, especially in the service and support sectors, the 

crisis in recruiting and retaining DSPs for people with an

ID will most likely worsen. Thus, it is important to

Figure 10. U.S. unemployment rate over time, 2007–2017

Source: Bureau of Labor Statistics, 2017.
President’s Committee for People with Intellectual Disabilities 31

“Despite the degree of professionalism, technical expertise and compassion our staff are 

required to possess, insufficient agency funding means we are unable to pay them a living 

wage. At $12.50/ hour to start, all our staff, even those who work 39 hours per week, have 

second jobs in order to make ends meet.”

—The Arc New London

maximize strategies to bring new entrants into the 

DSP field from non-traditional pools.

Growing diversity. The U.S. population is increasingly 

diverse, and by 2055, the U.S. will not have a single racial 

or ethnic majority. This significant projected change has 

been and will continue to be driven by immigration and 

increases of diverse racial and ethnic groups already 

residing in the United States. According to a recent Pew 

Research Center report, nearly 59 million immigrants 

have arrived in the U.S. in the past 50 years, mostly from 

Central and South America, the Caribbean and Asia. 

Roughly 14 percent of the U.S. population is foreign-born, 

compared with just 5 percent in 1965 (Pew Research 

Center, 2016). In the upcoming decades, it is anticipated 

that most of the U.S. population growth will be linked to 

new Asian and Hispanic immigration and to growth in the 

population the U.S. Census calls “native-born,” who may 

also be of Asian, Hispanic/ Latino and other ethnicities.

An increased number of DSPs are first-generation 

Americans, many of whom speak fluent English

in addition to their language of origin. It is not 

uncommon for these DSPs to have been employed in 

health care (e.g., as doctors or nurses), education or 

other allied professions in their countries of origin and 

to now be working as DSPs while pursuing credentials 

to practice their profession in the U.S. As the DSP 

workforce shortage has intensified, businesses have 

employed more immigrant workers. It is estimated 

that 20–25 percent of direct support workers 

employed by nursing homes and home health 

organizations are foreign-born. While percentages 

vary based on geographic region, multiple studies 

reviewed by The Lewin Group (2008) estimated that 

in some parts of the U.S., over half of all DSPs are 

non-white.

The cultural and linguistic diversity in the LTSS industry is 

a significant strength. The DSP workforce resembles the 

current and emerging demographic makeup of the United 

States. This workforce brings a wealth of knowledge and 

skills, including the capacity to understand and respond to 

racial, ethnic and cultural differences among the U.S. 

population, and to speak languages beyond English. The 

U.S. Census Bureau estimates that 21.5 percent of the 

U.S. population 5 years and older speak a language other 

than English at home (U.S. Census Bureau, 2017).

U.S. ECONOMIC STABILITY AND GROWTH

The stability and growth of the U.S. economy 

dramatically affects the direct support workforce in 

the LTSS industry. When the economy is doing poorly 

and unemployment rates are higher, employers of 

DSPs have some reprieve in terms of being able to fill 

vacant positions because more people are looking for 

jobs. When unemployment rates are lower, it is more 

difficult to fill vacancies. During and immediately 

following the Great Recession, with unemployment 

rates hovering around 10 percent (as shown in Figure 

10), most service providers experienced substantial 

relief from the pressure of high vacancy rates. As 

economic conditions have improved and general 

workforce participation has decreased (from 66

percent of all residents 16 years and older in March 

2007, to 63 percent in March 2017), employers of DSPs 

have felt the workforce crunch more than ever. At 

trade association meetings and in boardrooms where 

leaders of service-providing agencies make decisions, 

it is broadly recognized that this crisis can’t be solved 

by simply hiring more people. The direct support 

workforce is the most pressing issue discussed by LTSS 

business owners today.
Report to the President 2017: America’s Direct Support Workforce Crisis 32

LOW WAGES AND LACK OF AFFORDABLE 

BENEFITS

Without question, and as previously discussed, a strong 

influence on this workforce crisis is the low wages and 

lack of affordable benefits available to DSPs. No matter 

how appealing the work itself is, employees need to be 

able to live and support their families. This is universally 

recognized by employers, workers and clients within the 

LTSS industry.

RAPID, INTENSE, FULL-SCALE RESPONSES 

NEEDED THROUGHOUT THE U.S.

People with an ID and their family members have always 

known and experienced the effects of the ever-revolving 

door with DSPs. Yet, employers, advocates, policy makers 

and allies have been slow to make this their highest issue 

and to identify it as a threat to quality in LTSS.

Unfortunately, like death by a thousand cuts, there has 

been no single event to rally society to do what needs to 

be done – to actually keep the promises made to people 

with an ID and their families. It will take bold leadership 

within the Administration to work in collaboration with 

Congress and industry to implement solutions to these 

challenges. Without such leadership, the LTSS system is

threatened for all people with an ID who rely on it to 

meet their most basic needs. Fortunately, there are 

promising practices that offer solutions that can be 

adopted. When implemented, these practices will create 

efficiencies and cost-effectiveness.

“I left that agency for a higher-paying job 

so that I could make ends meet and work 

less hours. While that job was good 

money, it was not as meaningful as being a 

direct support professional. I decided to go 

back to what made me happy in life and 

what made me feel like I was making a 

difference in someone’s life.”

—Clarice Davis (DSP 4 years OHIO)
President’s Committee for People with Intellectual Disabilities 33

MOVING TOWARD SOLUTIONS USING PROMISING PRACTICE

Significant changes are needed in the nation’s 

approach to the workforce that supports people with 

an intellectual disability if we are to sustain the 

commitments made to them and to their families. 

Over the past two decades, small-scale efforts have 

been made to find solutions, with small investments 

provided by federal, state and local governments. 

Most of these efforts have been grant-funded 

demonstration projects that don’t prove fully 

sustainable after the grant funding ends. Practices 

that would address the workforce crisisinclude:

1. improving professional identity andrecognition;

2. teaching business and organizational leaders 

skills to improve their ability to recruit, select 

and retain employees;

3. the use of self-directed services that permit 

individuals and families to recruit, select and 

retain their own DSPs;

4. using worker cooperative and independent 

provider models;

5. using competency-based training models that lead 

to credentialing or certification of staff and yield 

wage increases; and

6. using technology-enhanced supports.

7. This section of the Report highlights some of 

these practices.

PROFESSIONAL IDENTITY AND 

RECOGNITION

In order for young adults and others to be recruited into 

DSP positions, they have to know who these professionals 

are and what they do. Programs that recognize and create 

professional identity will prove useful in letting Americans 

know about the jobs and the field of community supports 

for people with an ID.

National Professional Association. The National Alliance 

for Direct Support Professionals (NADSP) is a professional 

association for this workforce. Its aims are to (1) enhance 

the status and recognition of DSPs, provide opportunities 

for training and education, support the development and 

implementation of a voluntary credentialing program, (4) 

create a national professional organization for DSPs, (5)

support public policy initiatives that increase the wages 

and overall compensation for DSPs and (6) determine an 

occupational title that best matches the role and 

responsibilities of DSPs. The work of NADSP has resulted in 

the wide use and industry acceptance of the occupational 

title “Direct Support Professional,” a national Code of Ethics, 

adoption of the 15NADSP Competency Areas and associated 

skill statements for the DSP role, and a voluntary 

credentialing program based on the NADSP competency and 

skills areas.

Recognition Programs. Raising awareness about the 

complexity and importance of the DSP role is an 

important first step toward recognizing and rewarding 

DSPs in a manner they deserve. A number of 

recognition and awareness campaigns have been 

launched in states and local communities throughout 

the U.S. to highlight the importance of DSPs to the lives 

of the people they support. DSPs are nationally 

recognized and honored in September during Direct 

Support Professional Week, first formally authorized in 

2003 through a Congressional Resolution. This week is 

now also recognized by many state governors and 

organizations as an opportunity to celebrate and 

acknowledge the profession of direct support. Several 

national associations have developed award programs 

to recognize exemplary contributions of individual 

DSPs. NADSP also recognizes effective organizational 

practices through its Moving Mountains award 

program. Combined, these programs bring attention to 

who DSPs are, what they do and effective strategies for 

recruitment and retention.

Grassroots and Public Awareness Campaigns. 

Grassroots campaigns have successfully increased 

awareness about the important work done by DSPs. 

These campaigns are most often connected to efforts to 

increase wages and/or provider rates within LTSS. They 

strive to mobilize DSPs, individuals with an ID, family 

members and disability advocates to join forces to share 

stories and ask for change. Campaigns of this nature do 

not happen in every state or community, and they vary 

with regard to visibility. Various videos that have been 

used in these campaigns to illustrate the work of DSPs 

and the effect of the workforce crisis are available on 

Facebook and other social media outlets. Recent 

examples include: (a) Befair2directcare –

https://www.youtube.com/watch?v=J52Zl7-Fcjw/; (b) 

Value the Work, Raise the Wage –

http://www.oregonresource.org/value-the-work.html; 

(c) The Pennsylvania Advocacy and Resource for Autism 

and Intellectual Disability (PAR) –
Report to the President 2017: America’s Direct Support Workforce Crisis 34

http://www.fixthedspcrisis.com/; and (d) ANCOR 

National Advocacy Campaign – 

http://www.nationaladvocacycampaign.org/

BUSINESS ACUMEN FOCUSED ON 

WORKFORCE RECRUITMENT AND 

RETENTION STRATEGIES

Direct Support Professional workforce challenges are 

pervasive, and all service-providing organizations struggle 

to find and keep their DSP employees.

Yet, some organizations do better than others in 

managing DSP recruitment and retention. The 

variability across organizations is likely a product of 

organizational business practices. While systemic issues 

strongly influence workforce challenges (e.g., wages, 

unemployment rates), there are evidence-based 

strategies that organizations can use that will help them 

maximize retention. Both the American Network of 

Community Options and Resources (ANCOR) and The 

Arc of the United States have developed workforce

recruitment and retention toolkits to support their 

member organizations. These tools were developed and 

used in pilot demonstrations conducted by the 

Research and Training Center on Community Living at 

the University of Minnesota. When used in combination 

with a specific recruitment and retention organizational 

plan, these tools have assisted participating 

organizations in reducing turnover by as much as 15

percent for DSPs and 29 percent for their supervisors. 

The toolkits include:

• Targeted Marketing Flyers developed with

feedback from members and stakeholders

• Structured Behavioral Interview Questions and

Interviewers Guide

• Access to the National Frontline Supervisor

Competencies (NFSC) – http://rtc.umn.edu/docs/

National_Frontline_Supervisor_comp_7-2-13.pdf

• Customized and Branded Public Service

Announcements (PSAs) to be used on multiple

media platforms

• Customized Realistic Job Previews(RJPs)

These toolkits are designed to provide maximum impact in 

the digital age while still taking advantage of opportunities 

for advertising in printed publications and on job notice 

boards. The targeted marketing flyers can be printed, or 

they can be posted on social media or organization 

webpages. The public service announcements (PSAs) are 

designed as short (30-second) clips to raise awareness and 

provide a call to action. They are available in digital 

download for members to use for marketing and outreach 

and can be posted to social media and organization 

webpages. The Realistic Job Previews (RJPs) are customized 

for organizations and provide a snapshot of a day in the 

work life of a DSP, visually illustrating the positive aspects 

of the work balanced with the challenges from the 

perspective of DSPs. The ANCOR toolkit can be found at 

http://www.nationaladvocacycampaign.org/welcome/, and 

The Arc of the United States toolkit, at

http://www.thearc.org/.

“We must do something to attract more 

qualified people to do this important and 

noble work. Now more than ever, direct 

support professionals will be front and 

center in helping people like me to build 

social capital, helping us in finding and 

keeping meaningful employment, promoting 

social inclusion – all the while still 

supporting safety, assessing risk and

promoting choice.”

—Ed Bartz (a person who previously 

self-directed and now uses an 

agency-with-choice model)
President’s Committee for People with Intellectual Disabilities 35

SELF-DIRECTED SERVICES

Self-directed services allow a person with an ID and/ or 

their family to determine their own goals and support 

needs and the services they want, and to find, choose and 

train their own staff. Self-directedservices promote 

people’s independence and control over their own lives. 

While this model works for many individuals and families, it 

is not yet widely used within the ID/DD service system. 

Varying models of fiscal accountability are used in selfdirected services. Within ID/DD programs, the vast majority 

use fiscal intermediaries approved by their state to manage 

their accounts and serve as employers of record for staff. 

Currently, 41 states offer some type of self-direction as a 

support option through their Home and Community-Based 

Services, and increasingly, self-directed options are offered 

through state-plan Medicaid services. A recent nationwide 

review of self-direction found that at least 96,796 

individuals with ID/DD participated in it across 33 states 

(DeCarlo, et al., 2017).

It is not uncommon for individuals and families who selfdirect to pay a higher hourly rate for their DSPs (though 

often fewer benefits are provided these same DSPs). Some 

studies have shown that self-directed models have lower 

rates of DSP turnover (Timberlake et al, 2014; Gross et al., 

2013). Using self-direction allows individuals and families to 

more easily integrate the natural support of family and 

friends, and it is sometimes easier to arrange intermittent 

or temporary supports when they are needed because of 

the program flexibility (Melda et al., 2009). In some selfdirection models, family members can serve as paid DSPs. A 

benefit of individuals and families being engaged in finding, 

training and supporting their own direct support staff is the 

pressure it relieves on the traditional service system that 

struggles to maintain its current workforce. It also brings 

new entrants into the DSP workforce who otherwise might 

not have considered DSP work.

THE USE OF INDEPENDENT PROVIDERS (OR 

CONTRACTORS)

Several states have begun using an independent 

provider (IP) model for direct support staff.

Independent providers, or independent contractors, are 

self-employed and provide services directly to individuals 

with an ID. These contractors can be affiliated with a 

community organization that acts as a fiscal intermediary, 

or they can be self-employed. IPs find employment 

through advertising, through recommendations from 

other people in the industry and, in some cases, through 

registries. The IP model gives people with an ID and their 

families greater choice over who provides services to 

them. There is typically lower overall cost associated with 

independent providers, as there is less overhead.

The IP model has proven to be a viable alternative to the 

standard model of agency-controlled staffing. Allowing 

DSPs to direct their own career can result in increased 

wages and improved retention. In states that use the IP 

model, education and certification are typically available 

to help DSPs establish themselves as IPs and to support 

their training needs. Examples of states with LTSS models 

that use independent contractors as Personal Care 

Assistants (and some DSPs) are Arizona, California, 

Oregon, Minnesota and Washington.

WORKER COOPERATIVES

Worker cooperatives (co-ops) are autonomous associations 

of direct support workers who are united voluntarily to 

meet their common economic, social and cultural needs and 

aspirations by developing, jointly owning and democratically 

controlling the organizations in which they are employed. 

Across all types of industries, co-ops have shown capacity to 

reduce poverty and increase employment opportunities and 

work experiences for employees. Within cooperative 

models, DSPs become business owners and manage all

Workforce Cooperatives

Cooperative Home Care Associates

Established in New York City in 1985 with the initial 

goals of reducing staff turnover, improving the quality 

of supports and services provided, and increasing 

compensation for DSPs and other home care 

professionals. http://www.chcany.org/

Home Care Associates

Established in Philadelphia in 1993 and funded by a 

private foundation. Within this organization, all 

home care aids are shareholders. 

www.homecareassociatespa.com/home.html
Report to the President 2017: America’s Direct Support Workforce Crisis 36

Workforce registry and matching service example

MySupport was founded in 2014 by a group of 

disability rights activists, former state Medicaid 

officials and leaders in the aging and disability policy 

community seeking to expand Medicaid-funded selfdirected services. MySupport connects seniors, 

families and people with disabilities with direct 

support workers and the tools to manage them.

MySupport allows workers and those seeking support 

to create profiles, which are then matched using a 

proprietary matching algorithm focused on personality 

and values in a direct support relationship. Users are 

asked questions about how preferred responses to

different support-related scenarios, general personality

queries and other relevant information, enabling the 

MySupport platform to assign a compatibility score 

between each worker and each person with a 

disability on the platform.

“Too much of the conversation on direct support 

assumes it’s just about putting a warm body in the right 

place at the right time,” said Ari Ne’eman,MySupport’s 

Chief Executive Officer and co-founder. “We designed 

MySupport to let people find workers based on their 

own personal definition of quality. Every person with

a disability deserves the right worker for them. Our 

matching algorithms work like online dating – you get 

to see what people value and believe in before sitting 

down for an interview or first home visit.”

In addition, MySupport offers fiscal intermediaries 

and agencies tools to manage time and attendance, 

documentation and note-keeping and other tools 

necessary to manage the worker-employer 

relationship. The platform can be customized to 

reflect employer or budget authority systems and

includes a comprehensive back end system that lets 

program administrators at the agency/FI, health plan 

or state level set service-authorizations, overtime 

requirements, joint employer considerations and other 

relevant components of platform operations.

At request, the company offers other forms of 

customization, including workforce analytics and 

integration with established eLearning offerings.

My Support typically is contracted with state 

governments, managed care organizations, agencies 

and fiscal intermediaries to set up operations in a 

particular area. My Support works collaboratively with 

its clients and local community-based organizations to 

recruit workers, assist them in creating profiles and 

provide technical support and assistance to those 

seeking support on the platform and program 

administrators seeking to customize platform 

operations, set service authorizations, access analytics 

data or otherwise interface with the platform. My 

Support is currently live in California, Iowa and New 

York and will soon launch in Virginia, Maryland and 

several other states.

aspects of the organization’s operation. As such, they have 

more control over their wages, benefits, training and 

workplace culture. While the cooperative model is 

currently most often used in home health services, it has 

potential for a positive effect in the direct support 

workforce because so many DSPs live in poverty and want 

more influence on organizational culture.

DIRECT SUPPORT WORKFORCE REGISTRIES 

AND MATCHING SERVICES

Across the U.S., more people are hiring, managing, 

supervising and discharging their own support staff. 

Many people who self-direct hire family members or 

friends, but others benefit from services that link them 

to qualified and appropriate DSPs. Workforce registries 

and matching services provide a mechanism through 

which this linking can occur. Such registries facilitate 

connections between DSPs and individuals who are 

looking for new employees.
President’s Committee for People with Intellectual Disabilities 37

Workforce registries are intended to connect supply 

with demand, and many strive to ensure compatibility 

between DSPs and the individual supported, with the 

hope that a good match will reduce turnover (Dilla, 

Robbins & Blakeway, 2013).

COMPETENCY-BASED TRAINING PROGRAMS

Competency-based training (CBT) is designed to teach 

people knowledge (what a person knows), skills (what a 

person can do) and attitudes (the way in which a person 

thinks about something). CBT usually includes a 

combination of classroom and/or online didactic training 

delivery, on-the-job training and skills demonstration and 

measurement (Hewitt, 1998). Training that uses a 

competency-based approach is purposefully designed to 

result in the learner being able to demonstrate skills 

based on a specific set of competencies, such as those 

identified earlier in Figure 2 (p. 16). There is a growing, yet 

still limited, number of competency-based training 

programs that target DSPs as learners. The National 

Alliance for Direct Support Professionals accredits training 

programs that are designed to support DSPs who 

complete their national credentialing program. Currently, 

there are 11 NADSP-accredited programs.

DirectCourse is an example of an accredited online 

training curriculum that was developed with grant funding 

from the Administration on Intellectual and 

Developmental Disabilities, was successfully scaled up and 

became self-sustaining post-funding. It is currently used 

by 34 states, and has over 600,000 active learners 

engaged each day and over 7 million competency-based 

lessons completed each year. This program has an 

emerging research base that shows that when 

DirectCourse is combined with classroom discussion, 

mentoring and on-the-job skill demonstration, 

organizations experience reduced DSP turnover, DSPs gain 

skill and report better relationships with their supervisors, 

and individuals with ID/DD experience better quality-oflife outcomes in areas such as employment, home living 

and health and safety (Bogenshutz et al., 2015; Hewitt et 

al., 2017).

CAREER LATTICE AND CREDENTIALING

Career paths and credentials such as certificates are 

common strategies across industries in the U.S. to 

improve the skills of workers and to differentiate and 

reward them for completing training and developing

additional skills. Several models of career latticing exist 

in the direct support workforce to encourage workers 

to stay in direct support roles (vs. moving up and out 

into supervisory roles). Most are multi-level programs 

that offer specialized skills based on (1) specialized 

needs experienced by people with an ID (e.g., complex 

health, behavioral support, aging), (2) service type 

(e.g., in-home, employment, residential, community) 

or (3) degrees of autonomy and independent decisionmaking specific to the role of a DSP (initial, proficient 

or advanced). Providing a pathway for advancement 

through DSP credential programs has proven 

challenging within the LTSS industry, especially for the 

group of workers who support people with an ID. Three 

primary reasons are at the foundation of the lack of 

expansion and widespread use of credentialing and 

career pathway programs: (1) There are few incentives

(e.g., increased wages, opportunities for advancement) 

for DSPs to complete such programs; (2) state and 

federal regulations do not require them; and (3) the 

reliance on Medicaid funding for LTSS requires that 

wage incentives be built into provider rates, which 

requires legislative appropriation at the state level.

In response to some of these barriers, in 2011 the 

Centers for Medicare & Medicaid Services (CMS) issued a 

bulletin (CMS, 2011) to states that clarified allowable 

training within Medicaid rate-setting and provided 

guidance on Medicaid reimbursement policy for direct 

service worker continuing education and training costs. 

To further clarify their intent, CMS issued a toolkit 

(Robbins, Dilla, Sedlezky & Johnson Sirek, 2013) that 

provides strategies and methods states can use to cover 

costs of continuing education for the direct support 

workforce, including training, apprenticeship,

credentialing and certification. The toolkit was created to 

ensure that state Medicaid administrators had 

information about strategies they can use to establish 

and provide accessible continuing education and training 

to further the skills, knowledge and competencies of the 

workforce providing services to Medicaid-eligible service 

recipients.

Using a comprehensive multi-stakeholder engagement 

process, the New York State Office for People With 

Developmental Disabilities (OPWDD) identified six critical 

components of effective credentialing programs: They 

should be (1) sufficiently funded so as to be developed, 

implemented, sustained and evaluated; (2) accessible to 

DSPs in ways that enable participation irrespective of 

where DSPs live and where the
Report to the President 2017: America’s Direct Support Workforce Crisis 38

program is offered; (3) designed academically for learner 

success and to include mentoring and other types of 

learner support; (4) designed to promote adult learning 

and use of a hybrid methodology including both online 

and classroom training to accommodate DSP schedules 

and the need to learn at varying times; (5) inclusive of 

work-based learning opportunities where learners can 

develop and practice skills in real work settings; and 6) 

designed to ensure that wage and promotional 

opportunities are built into the infrastructure of LTSS 

through Medicaid rates.

USING TECHNOLOGY AS SUPPORT

As long-term services and supports change, new 

technologies are emerging and being used to provide 

support to people with an ID who demand lower levels of 

on-site direct support staffing. These technology 

supports are sometimes used as a supplement to direct 

support staffing and at other times used in the absence 

of direct support staffing. They are used in individual 

homes, family homes and group living situations to

monitor the safety and support the independence of 

people with ID/DD. Technology is also used to support 

people with transportation, to help them navigate their 

community and to support their daily schedule. Many 

states now allow for the use of technology supports 

through Home and Community-Based Services.

In providing individuals and their legal representatives 

with choice and control over the use of technology, 

person-centered planning and support are critical to 

ensure ethical decisions that support privacy and 

autonomy (Braddock et al., 2013). For many people 

with an ID, technology facilitates greater independence 

and reduces the need for more restrictive, supervised 

settings (PCPID, 2015). Several types of technology are

used in LTSS:

Sensors. Sensor technology is used to monitor the health 

and safety of people with an ID. The most widely known 

sensor technology is alert systems that people wear around 

their neck so that, if they fall or need help, they push a 

button and someone will either call or come to assist. 

Other commonly used sensor technologies are sensors on 

doorways so that a person who is responsible for 

monitoring can know if a person with an ID has arrived 

home or left their house. These sensors also provide an

alert if someone enters a home or room when they are 

not expected. Sensors can be used on beds and in 

bathrooms to monitor whether a person gets up in the 

middle of the night and if they are using the restroom. 

These sensors can identify health conditions such as sleep 

apnea (identified by sensor data that shows unusual sleep 

patterns and restlessness) or diabetes (identified by 

unusually high frequency of urination). Each sensor is 

monitored by an organization or designated person who 

responds on an as-needed basis if alerted to do so.

Remote Monitoring. Remote monitoring technology is 

used by installing cameras that project images through 

secure internet connections, allowing DSPs (or others) to 

monitor a person with an ID from a remote location. In 

these situations, protocols are put in place that instruct 

the remote monitoring DSPs about what to look for; if 

anything of concern is noted, the remote DSP will call the 

individualbeing supported or deploy a paid staff or family 

member to intervene.

Computer-Assisted Devices (Tablets, Smartphones). 

There is a variety of personal technology that supports 

learning and can lessen reliance on DSPs. These tools 

include voice interfaces (Barker, 2002), computer 

training and teaching programs (Davies, Stock, & 

Wehmeyer, 2004) and picture-based email programs. 

Despite their potential, these technologies are not 

readily available to most people with ID/DD.

Examples of credential programs for the direct support 

workforce that supports people withan intellectual 

disability

Association of People Supporting Employment 

(APSE) – http://apse.org/certified-employmentsupport-professional/

The Ohio Alliance of Direct Support Professionals 

(OADSP): DSPaths – http://www.

oadsp.org/?page_id=34

National Alliance for Direct Support

Professionals (NADSP) – https://nadsp.org/

about-dsp-credentialing/

National NADD Competency-Based Direct-Support 

Certification – http://acp.thenadd.org/ dsp.htm
President’s Committee for People with Intellectual Disabilities 39

Transportation Technologies. Technology has the 

potential to dramatically enhance independence and 

mobility in the community for people with ID/ DD, 

meaning they can enjoy better access to the services 

and opportunities that they need in order to live most

fully. Devices with Global Positioning Systems and 

voice-activated instructions are used to support 

community navigation. With the availability of 

application-assisted transportation services (e.g., Uber 

and Lyft), some people with an ID are using technology 

to request and manage transportation. The Accessible 

Transportation Technologies Research Initiative 

(ATTRI), a multimodal effort at the Department of 

Transportation, seeks to remove barriers to 

independent travel by developing technologies that (a) 

make wayfinding easier for people with a variety of 

disabilities (sensory, cognitive and others), (b) make 

crossing intersections safer, (c) provide concierge-style 

services to assist travelers along their journeys and (d) 

utilize advances in robotics and automation to provide 

additional transportation options. After extensive 

research and public engagement to help understand 

the needs of stakeholders, the ATTRI program is 

entering the first stage of prototype development.

Electronic Medication Dispensers. A key role most DSPs 

have is to support individuals with an ID in taking their 

medications as prescribed by physicians. DSPs prepare, 

administer and document the delivery of medications. 

There are technology-enhanced devices on the market 

that can be programmed to open at the correct time 

each day and offer one dose of medication at a time. 

Some models provide verbal prompts that it is time to 

take medication. While these devices rely on caregivers 

to program and fill them with medications, for some 

people with an ID this technology reduces the need for 

a DSP or family caregiver to be present to administer 

medications.

Smart Homes. Using technology systems in homes 

can provide numerous benefits for people with 

disabilities, their families and DSPs. Tracking

systems can provide feedback to family and staff on 

daily-living activities such as cooking, cleaning and 

laundry. Pattern recognition and learning software 

can be used to alert direct support employees of 

impending risks or adverse events, including social 

isolation and challenging behavior (Elite Care, 

2002). Environmental automation can control 

operation of household systems, including disabling 

an appliance, or unlocking a door when a person is 

ready to enter and locking it after they enter or 

leave.

Personal Robots and Assistants. Robots and electronic 

assistants (e.g., Siri and Alexa) are becoming more 

commonly available and used in the U.S. These 

technologies have the potential to supplement the role of 

DSPs and family caregivers (Dario et al., 1999; Excell, 

2004). Analysis of data from the National Long-Term Care 

Survey showed that utilization of assistive technologies 

was associated with fewer hours of personal assistance 

(Hoenig, Taylor & Sloan, 2003). Other advances have also 

been utilized to assist people with activities of daily living 

(Rotstein, 2004; Stresing, 2003). 

EXPANDING THE WORKFORCE PIPELINE

Given the rapidly growing need for direct support workers 

to fill positions, interventions have been utilized to expand 

the workforce pipeline. The goal of these interventions is 

to reach out to and recruit employees from among 

populations that have not traditionally fit the profile of a 

typical direct support worker.

Pathways for People with Disabilities. At Texas A&M 

University, the Center on Disability and Development offers 

the Bridge to Career in Human Services program, which 

provides pathways for people with disabilities to access 

postsecondary education opportunities specifically leading 

to careers as DSPs. Coursework is carried out in one 

semester, and the second semester includes a supervised 

practicum experience during which students learn and 

utilize skills that prepare them for employment as DSPs. 

More information on this program is available at 

http://b2c.tamu.edu/.

Pathways for High School Students. In Grove City, Ohio, 

the South-Western City School District Career Tech 

Community Career Connections Program–Ohio (C3PO) 

gives high school students the opportunity to gain 

knowledge and skills for, and provides a pathway to, a 

credential to become a certified DSP. Juniors and seniors in 

high school gain access to the components of a 

credentialing program and have the opportunity to earn a 

Technology-Enhanced Staffing Providers

Night Owl – https://nossllc.com/

Rest Assured LLC – https://restassuredsystem.com/

Sengistix – https://www.sengistix.com/

Simply Home – http://www.simply-home.com/
Report to the President 2017: America’s Direct Support Workforce Crisis 40

Certificate of Initial Proficiency or Certificate of 

Advanced Proficiency that they can utilize to gain 

employment in the workforce post-high school. More 

information on this program is available at http://www.

swcsdcareertech.com/c3po.html.

RECOMMENDATIONS

This direct support workforce crisis has been coming for decades. Policy makers and their allies have been slow to make 

finding and implementing solutions a priority. It will take courageous leadership within the Administration to ensure 

implementation of targeted solutions to address this crisis. Without bold and swift action, the LTSS system is threatened 

for all people with ID/DD who rely on it to meet their most basic needs. The President’s Committee for People with 

Intellectual Disabilities proposes the following Recommendations to help resolve the direct support workforce crisis. We 

urge that the actions and programs presented here be developed and implemented, and that their outcomes be 

evaluated.

1. The U.S. Department of Health and Human 

Services, Centers for Medicare & Medicaid 

Services should ensure through review of Home 

and Community-Based Services Waivers or 

regulation that states include sufficient Direct 

Support Professional wages and compensation 

packages in their rate-setting methodologies for 

long-term services and supports to people with 

intellectual and developmental disabilities.

2. The U.S. Department of Health and Human 

Services, Administration for Community Living 

should provide technical assistance and financial or 

programmatic incentives to states to promote the 

use of technology solutions in long-term services 

and supports, such as remote monitoring, sensors, 

robotics, and smart homes, to create efficiencies, 

reduce costs and support community living for 

people with intellectual disabilities.

3. The U.S. Department of Health and Human 

Services, Administration for Community Living 

should provide funding to states through grants 

and contracts to develop, implement and 

evaluate comprehensive programs designed to 

provide training and technical assistance to 

employers that focus on improving business 

acumen to reduceDirect

Support Professional vacancy rates, improve 

retention and promote efficient, high-quality longterm services and supports for people with 

intellectual and developmental disabilities.

4. The U.S. Departments of Education, Health and 

Human Services, and Labor should create grant 

programs and financial incentives for states to 

expand the pool of Direct Support Professionals 

through recognition programs, grassroots 

campaigns and training efforts designed to 

expand awareness about the profession and 

encourage greater participation by people with 

disabilities, men, retirees, and young adults 

across diverse racial, ethnic and cultural groups.

5. The U.S. Department of Health and Human 

Services should work with states to expand 

utilization of self-direction in long-term services 

and supports so that family, friends and neighbors 

can be hired as Direct Support Professionals.

6. The U.S. Department of Labor through the Bureau 

of Labor Statistics should investigate ways to 

recognize “Direct Support Professional” as a 

distinct occupation title and provide routine labor 

statistical reporting on this occupation.
President’s Committee for People with Intellectual Disabilities 41

7. The U.S. Department of Health and Human 

Services, Centers for Medicare & Medicaid 

Services (CMS) should ensure through 

regulation and review of Home and CommunityBased Services Waivers that states identify 

provider qualifications that recognize Direct 

Support Professionals as skilled practitioners 

who are community navigators, facilitating 

greater community and economic involvement 

for people with intellectual and developmental 

disabilities. Additionally, CMS and states should 

ensure that compensation rates are aligned with 

appropriate status, value, respect, a living wage 

and benefits.

8. The U.S. Department of Health and Human 

Services, Administration for Community Living

and Centers for Medicare & Medicaid Services

should develop federal standards and work 

with the Department of Labor to implement 

specialized credentials and professional 

development opportunities for Direct Support 

Professionals, ensuring: (a)that

people with intellectual disabilities are trainers 

and mentors, (b) that programs are focused on 

competencies specifically identified for DSPs, (c) 

that completion of training to meet standards is 

voluntary and occurs post-hire, and (d) that the 

credentials result in increased wages and access to 

benefits for DSPs.

9. The U.S. Department of Labor should engage the 

broader American workforce system to find 

solutions to this crisis by using community colleges 

and American job centers to develop and invest in 

career training and credentialing for Direct 

Support Professionals.

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

and the U.S. Department of Labor should engage 

the business community and provide grants and 

other incentives to states to develop online 

matching registry services and other creative 

options to match people with intellectual 

disabilities and their families who need help finding 

available DSPs.
Report to the President 2017: America’s Direct Support Workforce Crisis 42

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President’s Committee for People with Intellectual Disabilities 45

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Report to the President 2017: America’s Direct Support Workforce Crisis 46

FREQUENTLY USED ACRONYMS

AAIDD American Association on Intellectual and Developmental Disabilities 

ACL Administration for Community Living

ADA Americans with DisabilitiesAct

ADL activities of daily living

AIDD Administration on Intellectual andDevelopmental Disabilities 

ANCOR American Network of Community Optionsand Resources 

AOD Administration on Disabilities

APSE Association of People Supporting Employment

ATTRI Accessible Transportation Technologies Research Initiative

BLS Bureau of Labor Statistics

CBT competency-based training

CDS College of Direct Support

CMS Centers for Medicare & Medicaid Services CNACertified NursingAssistant

CPR cardiopulmonaryresuscitation

DD developmental disabilities

DD Act Developmental Disabilities Assistance and Bill of Rights Actof 2000

DOL U.S. Department of Labor

DSP Direct Support Professional

FMAP Federal Medical Assistance Percentage 

HCBS Home and Community-Based Services

HHA Home Health Aide

HHS U.S. Department of Health andHuman Services 

HSRI Human Service Research Institute

IC independent contractor

ICA International Cooperative Alliance

ID intellectual disability

IDD intellectual anddevelopmental disability 

IP independent provider

LTSS long-term services and supports

NADD National Association for Persons with Developmental Disabilities and Mental Health Needs

NADSP National Alliance for Direct Support Professionals

NYSACRA New York State Association of Community and Residential Agencies

OADSP Ohio Alliance of Direct Support Professionals

OPWDD New York State Office for People With Developmental Disabilities 

PCA Personal Care Attendant

PCPID President’s Committee for People with Intellectual Disabilities 

RTP Report to the President
President’s Committee for People with Intellectual Disabilities 47

APPENDIX A - NADSP COMPETENCIES

15 NADSP COMPETENCY AREAS

The following is a list of fifteen competency areas that 

have been approved by the NADSP Executive 

Committee. Each Competency area has corresponding 

skill statements. These skill statements describe the 

knowledge and skills DSPs must have to demonstrate 

competency in each area (see below). In deciding on 

which competency areas to focus, applicants should 

think about the things they currently do in their 

everyday work or areas in which they would like to 

become more knowledgeable and skillful. Through each 

competency area, DSPs have the opportunities to 

address challenges, work on issues identified by the 

person they support or assist a person in looking in a 

particular goal. For example, an applicant may provide 

support to a personwith a communication challenge. 

The applicant could use a work sample to demonstrate 

how they helped the person they support to develop a 

picture communication board.

AREA 1: PARTICIPANT EMPOWERMENT

The Direct Support Professional enhances the ability of the 

participant to lead a self-determining life by providing the 

support and information necessary to build self-esteem, 

and assertiveness; and to make decisions.

Skill Statements

• The competent DSP assists and supports the

participant to develop strategies, make informed

choices, follow through on responsibilities, and take

risks.

• The competent DSP promotes participant partnership

in the design of support services, consulting the

person and involving him or her in the support

process.

• The competent DSP provides opportunities for the

participant to be aself-advocate by increasing

awareness of self-advocacy methods and

techniques, encouraging and assisting the

participant to speak on his or her own behalf, and

providing information on peer support and selfadvocacy groups.

• The competent DSP provides information about

human, legal, civil rights and otherresources;

facilitates access to such information; and assists the

participant to use information for self-advocacy and

decision making about living, work, and social

relationships.

AREA 2: COMMUNICATION

The Direct Support Professional should be knowledgeable 

about the range of effective communication strategies and 

skills necessary to establish a collaborative relationship with 

the participant.

Skill Statements

• The competent DSP uses effective, sensitive

communication skills to build rapport and channels of

communication by recognizing and adapting to the

range of participant communication styles.

• The competent DSP has knowledge of and uses modes

of communication that are appropriate to the

communication needs of participants.

• The skilled DSP learns and uses terminology

appropriately, explaining as necessary to ensure

participant understanding.

AREA 3: ASSESSMENT

The Direct Support Professional should be knowledgeable 

about formal and informal assessment practices in order to 

respond to the needs, desires and interests of the 

participants.

Skill Statements

• The competent DSP initiates or assists in the initiation

of an assessment process by gathering information

(e.g., participant’s self-assessment and history, prior

records, test results, additional evaluation) and

informing the participant about what to expect

throughout the assessment process.

• The competent DSP conducts or arranges for

assessments to determine the needs, preferences,

and capabilities of the participants using appropriate

assessment tools and strategies, reviewing the

process for inconsistencies, and making corrections

as necessary.
Report to the President 2017: America’s Direct Support Workforce Crisis 48

• The competent DSP discusses findings and

recommendations with the participant in a clear

and understandable manner, following up on

results and reevaluating the findings as necessary

AREA 4: COMMUNITY AND SERVICE 

NETWORKING

The Direct Support Professional should be knowledgeable 

about the formal and informal supports available in his or

her community and skilled in assisting the participant to 

identify and gain access to such supports.

Skill Statements

• The competent DSP helps to identify the needs of

the participant for community supports, working

with the participant’s informal support system, and

assisting with, or initiating identified community

connections.

• The competent DSP researches, develops, and

maintains information on community and other

resources relevant to the needs ofparticipants.

• The competent DSP ensures participant access to

needed and available community resources

coordinating supports across agencies.

• The competent DSP participates in outreach to

potential participants.

AREA 5: FACILITATION OF SERVICES

The Direct Support Professional is knowledgeable about a 

range of participatory planning techniques and is skilled in 

implementing plans in a collaborative and expeditious 

manner.

Skill Statements

• The competent DSP maintains collaborative

professional relationships with the participant and all

support team members (including family/ friends),

follows ethical standards of practice (e.g.,

confidentiality, informed consent, etc.), and

recognizes his or her own personallimitations.

• The competent DSP assists and/or facilitates the

development of an individualized plan based on

participant preferences, needs, and interests.

• The competent DSP assists and/or facilitates the

implementation of an individualized plan to

achieve specific outcomes derived from

participants’ preferences, needs and interests.

• The competent DSP assists and/or facilitates the

review of the achievement of individual

participant outcomes.

AREA 6: COMMUNITY LIVING SKILLS & 

SUPPORTS

The Direct Support Professional has the ability to 

match specific supports and interventions to the 

unique needs of individual participants and 

recognizes the importance of friends, family and 

community relationships.

Skill Statements

• The competent DSP assists the participant to meet

his or her physical (e.g., health, grooming, toileting,

eating) and personal management needs (e.g.,

human development, human sexuality), by teaching

skills, providing supports, and building on individual

strengths and capabilities.

• The competent DSP assists the participant with

household management (e.g., meal prep, laundry,

cleaning, decorating) and with transportation needs to

maximize his or her skills, abilities and independence.

• The competent DSP assists with identifying, securing

and using needed equipment (e.g., adaptive

equipment) and therapies (e.g., physical, occupational

and communication).

• The competent DSP supports the participant in

the development of friendships and other

relationships.

• The competent community-based support worker

assists the participant to recruit and train service

providers as needed.

AREA 7: EDUCATION, TRAINING & SELFDEVELOPMENT

The Direct Support Professional should be able to identify 

areas for self-improvement, pursue necessary 

educational/training resources, and share knowledge with 

others.

Skill Statements

• The competent DSP completes required training

education/certification, continues professional

development, and keeps abreast of relevant

resources and information.
President’s Committee for People with Intellectual Disabilities 49

• The competent DSP educates participants, coworkers and community members about

issues by providing information and support and

facilitating training.

AREA 8: ADVOCACY

The Direct Support Professional should be 

knowledgeable about the diverse challenges facing 

participants (e.g., human rights, legal, administrative and 

financial) and should be able to identify and use effective 

advocacy strategies to overcome such challenges.

Skill Statements

• The competent DSP and theparticipant identify

advocacy issues by gathering information, reviewing

and analyzing all aspects of theissue.

• The competent DSP has current knowledge of

laws, services, and community resourcesto

assist and educate participants to secure needed

supports.

• The competent DSP facilitates, assists, and/ or

represents the participant when there are

barriers to his or her service needs and lobbies

decision-makers when appropriate to overcome

barriers to services.

• The competent DSP interacts with and educates

community members and organizations (e.g.,

employer, landlord, civic organization) when relevant

to participant’s needs orservices.

AREA 9: VOCATIONAL, EDUCATIONAL & 

CAREER SUPPORT

The Direct Support Professional should be knowledgeable 

about the career and education related concerns of the 

participant and should be able to mobilize the resources 

and support necessary to assist the participant to reach his

or her goals.

Skill Statements

• The competent DSP explores with the participant

his/her vocational interests and aptitudes, assists in

preparing for job or school entry, and reviews

opportunities for continued career growth.

• The competent DSP assists the participant in

identifying job/training opportunities and

marketing his/her capabilities and services.

• The competent DSP collaborates with employers and

school personnel to support the participant, adapting

the environment, and providing job retention

supports.

AREA 10: CRISIS PREVENTION AND 

INTERVENTION

The Direct Support Professional should be knowledgeable 

about crisis prevention, intervention and resolution 

techniques and should match such techniques to 

particular circumstances and individuals.

Skill Statements

• The competent DSP identifies the crisis, defuses the

situation, evaluates and determines an intervention

strategy and contacts necessary supports.

• The competent DSP continues to monitor crisis

situations, discussing the incident with authorized

staff and participant(s), adjusting supports and the

environment, andcomplying with regulations for

reporting.

AREA 11: ORGANIZATIONAL PARTICIPATION

The Direct Support Professional is familiar with the mission 

and practices of the support organization and participates 

in the life of the organization.

Skill Statements

• The competent DSP contributes to program

evaluations, and helps to set organizational

priorities to ensure quality.

• The competent DSP incorporates sensitivity to

cultural, religious, racial, disability, and gender

issues into daily practices and interactions.

• The competent DSP provides and acceptscoworker support, participating in supportive

supervision, performance evaluation, and

contributing to the screening of potential

employees.

• The competent DSP provides input into budget

priorities, identifying ways to provide services in a

more cost-effective manner.
Report to the President 2017: America’s Direct Support Workforce Crisis 50

AREA 12: DOCUMENTATION

The Direct Support Professional is aware of the 

requirements for documentation in his or her organization 

and is able to manage these requirements efficiently.

Skill Statements

• The competent DSP maintains accurate records,

collecting, compiling and evaluating data, and

submitting records to appropriate sources in a timely

fashion.

• The competent DSP maintains standards of

confidentiality and ethical practice.

• The competent DSP learns and remains current with

appropriate documentation systems, setting priorities

and developing a system to manage documentation.

AREA 13: BUILDING AND MAINTAINING 

FRIENDSHIPS AND RELATIONSHIPS

Support the participant in the development of friendships 

and other relationships.

Skill Statements

• The competent DSP assists the individual as needed

in planning for community activities and events (e.g.,

making reservation, staff needs, money, materials,

accessibility).

• The competent DSP assists the individual as

needed in arranging transportation for

community events.

• The competent DSP documents community

activities and events.

• The competent DSP encourages and assists the

individual as needed in facilitating friendships and

peerinteractions.

• The competent DSP encourages and assists the

individual as needed in communication with

parents/family (e.g., phone calls, visits, letters).

• The competent DSP implements individual

supports regarding community activities.

• The competent DSP provides incentive or

motivation for consumer involvement in

community outings.

• The competent DSP assists the individual as

needed in getting to know and interacting with

his/her neighbors.

• The competent DSP encourages and assists the

individual as needed in dating.

• The competent DSP encourages and assists the

individual as needed in communicating with social

workers and financial workers.

AREA 14: PROVIDE PERSON CENTERED 

SUPPORTS

Skill Statements

• The competent DSP provides support to people

using a person-centered approach.

• The competent DSP modifies support programs and

interventions to ensure they are person centered.

• The competent DSP challenges co-workers and

supervisors to use person centeredpractices.

• The competent DSP is knowledgeable about

person centered planning techniques.

• The competent DSP assists individuals in

developing person-centered plans.

AREA 15: SUPPORTING HEALTH AND 

WELLNESS

Promotes the health and wellness of all consumers.

Skill Statements

• Administers medications accurately and in

accordance with agency policy and procedures.

• Observes and implements appropriate actions to

promote healthy living and to prevent illness and

accidents.

• Uses appropriate first aid/safety procedures

when responding to emergencies.

• Assists individuals in scheduling, keeping, and

following through on all healthappointments.

• Assists individuals in completing personal care

(e.g., hygiene and grooming) activities.

• Assists with identifying, securing and using needed

adaptive equipment (i.e. adaptive equipment) and

therapies (e.g., physical, occupational, speech,

respiratory, psychological).

• Assists individuals in implementing health and

medical treatments.

• Assists individuals to take an active role in their

health care decisions.
President’s Committee for People with Intellectual Disabilities 51

APPENDIX B - NADSP CODE OF ETHICS

NATIONAL ALLIANCE FOR DIRECT SUPPORT 

PROFESSIONALS CODE OF ETHICS

The following is the complete text of the NADSP Code 

of Ethics as approved by the NADSP board in April of 

2016. The College of Direct Support (CDS) and the 

College of Frontline Supervision, Management, and 

Leadership (CFSM) embed the principles of this ethical 

code into every course. We encourage all learners and 

leaders in human service organizations to be familiar 

with these and support DSPs in aligning their practices 

to this code.

PREAMBLE

Vision. Direct Support Professionals (DSPs) who support 

people in their communities are called upon to make 

independent judgments on a frequent basis that involve 

both practical and ethical reasoning. The people who 

assume this complex role must examine their own values 

and beliefs while honoring those of the people they 

support.

Purpose. A primary purpose of the DSP is to assist people 

who need support to lead self-directed lives and to 

participate fully in our nation’s communities. This 

emphasis on empowerment and participation is critical. 

There are numerous pressures coming from 

organizations, government, social policy, and societal 

prejudice that can shift focus and allegiance away from 

the people who are being supported. DSPsface ethical 

decisions on a daily basis and consistently feel the tension 

between the ideals of the profession and its practice.

In order to maintain the promise of partnership and 

respect that must exist in a supportive relationship, a 

strong ethical foundation is critical to help DSPs navigate 

the maze of influences that bombard them. The 

prejudices of society form powerful barriers, yet too 

often, the very social policies and service systems 

designed to help can create additional barriers that 

prevent many people with intellectual, developmental or 

physical disabilities from enjoying a rich and fulfilling life.

Mission. Therefore, it must be the mission of the DSP to 

honor the individual path suggested by the unique gifts, 

preferences, and needs of each person they support. DSPs 

will walk in partnership with the person, and those who are 

significant to them, toward a life of opportunity, well-being, 

freedom, and contribution. While other professional groups 

(such as doctors, nurses, service coordinators, and social 

workers) are directed by clearly defined criteria, the DSP is 

directed by the person they support. Therefore, the DSP must 

exemplify ethical practice, high standards, and creative vision 

as they partner with those they support in order to engage 

community and make everyday choices about their personal 

finances, physical well-being, social and intimate 

relationships, and employment. The entire landscape of a 

person’s life can change through ethical and intentional direct 

supportservices.

Values, Skills and Knowledge. The knowledge and skills of 

community support practice must be joined with the 

ethical principles to create the environment needed to 

fully support people in making life choices. To do so 

effectively, we must all recognize DSPs as professionals 

who have values, skills, and knowledge that constitute a 

unique and important profession, and who can infuse 

these beliefs into practice. Furthermore, there must be a 

commitment to hiring, developing, and supporting DSPs to 

create a healthy sense of their own worth and potential. 

Direct Support Professionals must embrace their role to 

foster a spirit of cooperation and mutual responsibility 

with other DSPs regarding ethical practice.

NADSP Code of Ethics. In 2000, these issues led the National 

Alliance for Direct Support Professionals (NADSP) to bring 

together a national panel that included direct support 

professionals, self-advocates, family members, human 

service professionals and researchers to identify the kinds of 

ethical situations that direct support professionals face and 

to develop a set of ethical guidelines to address them. In 

2016, the NADSP reconvened a new and diversestakeholder

group to review the language of our original document. The 

revised Code of Ethics has not changed in content; it remains 

to serve as a straightforward and relevant ethical guide, 

shedding light on the shared path to a self-directed life. It is 

intended to guide direct support professionals in resolving 

ethical dilemmas they face every day and to encourage them 

to achieve the highest ideals of the profession.

Direct support professionals, agency leaders, policymakers, 

and people receiving support are urged to read the Code of 

Ethics and to consider ways that
Report to the President 2017: America’s Direct Support Workforce Crisis 52

these ethical statements can be incorporated into daily 

practice. The beliefs and attitudes expressed in the Code of 

Ethics are a cornerstone of the profession.This Code of Ethics 

is not the handbook of the profession, but rather a roadmap 

to assist us in staying the course of securing freedom, justice, 

and equality for all.

Person-Centered Supports:

As a DSP, my first allegiance is to the person I support; all 

other activities and functions I perform flow from this 

allegiance.

Furthermore, as a DSP, I will:

• Commit to person-centered supports as best

practice.

• Focus first on the person and understand that my

role in direct supports will require flexibility,

creativity and commitment.

• Recognize that each person is capableof directing

their own life.

• Honor those who cannot speak by seeking other

ways of understanding them.

• Recognize that the unique culture, social network,

circumstances, personality, preferences, needs and

gifts of each person I support must be the primary

guides for the selection, structure, and use of

supports for that person.

• Advocate with the person I support and others when

the demands of the system override the needs of 

those I support, or when individual preferences, 

needs or gifts are neglected for any reason.

Promoting Physical and Emotional Well-Being:

As a DSP, I will commit to promote the emotional, 

physical, and personal well-being of the people I support. 

I will encourage growth and recognize the autonomy of 

those receiving support while being attentive and 

energetic in reducing the risk of harm.

Furthermore, as a DSP, I will:

• Develop a respectful relationship with the people I

support that are based on mutual trust and

maintains professionalboundaries.

• Understand and respect the values of the people I

support and facilitate their expression of choices

related to those values.

• Assist the people I support to prevent illness, avoid 

unnecessary risk, and understand their optionsand

possible consequences that relate to their physical health,

safety, and emotionalwell-being.

• Partner with each person and their support network

to identify areas of risk and create safeguards specific

to these concerns.

• Challenge other support team members, such as

doctors, nurses, therapists, coworkers, and family

members, to recognize and support the rights of

people to make informed decisions even when these

decisions involve personalrisk.

• Be vigilant in identifying and reporting any situation in

which the people I support are at risk of abuse,

neglect, exploitation or harm.

• Address challenging behaviors proactively and

respectfully. If aversive or deprivation intervention

techniques are included in an approved support plan, I

will work diligently to find alternatives and pursue the

elimination of these techniques from the person’s

plan.

Integrity and Responsibility:

As a DSP, I will support the mission and vitality of my 

profession to assist people in leading self-directed lives and 

to foster a spirit of partnership with the people I support, 

other professionals, and the community.

Furthermore, as a DSP, I will:

• Be aware of my own values and how they influence

my professionaldecisions.

• Maintain competency in my profession through

learning and ongoing collaboration withothers.

• Assume responsibility and accountability for my

decisions and actions.

• Advance my knowledge and skills through ongoing

professional development and lifelong learning.

• Seek advice and guidance on ethical issues from

others as needed to inform decision-making.

• Recognize the importance of modeling valued

behaviors to co-workers, people I support, and the

community at-large.

• Practice responsible work habits.
President’s Committee for People with Intellectual Disabilities 53

Confidentiality:

As a DSP, I will safeguard and respect the confidentiality 

and privacy of the people I support.

Furthermore, as a DSP, I will:

• Seek information directly from those I support 

regarding their wishes in how, when and with whom 

privileged information should beshared.

• Recognize that confidentiality agreements are 

subject to federal and state laws and regulations, as 

well as agencypolicies.

• Recognize that it may be necessary to disclose 

confidential information in order to prevent serious 

or imminent harm to the person I support or others.

• Seek out qualified guidance to help clarify situations 

where the correct course of action is unclear to me.

Justice, Fairness and Equity:

As a DSP, I will affirm the human rights as well as the civil 

rights and responsibilities of the people I support. I will 

promote and practicejustice, fairness, and equity for the 

people I support and the community as a whole.

Furthermore, as a DSP, I will:

• Assist the people I support to access opportunities 

and resources in the community that are available to 

everyone.

• Facilitate the expression and understanding of rights 

and responsibilities with the peopleI support.

• Understand the guardianship or other legal 

representation of the people I support, and work in 

partnership with legalrepresentatives to assure that 

the person’s preferences and interests are honored.

Respect:

As a DSP, I will respect the human dignity and uniqueness 

of the people I support. I will recognize each person I 

support as valuable and promote their value within 

communities.

Furthermore, as a DSP, I will:

• Seek to understand the people I support today

in the context of their personal history, their social 

and family networks, and their hopes and dreams for 

the future.

• Recognize and respect the cultural context (such as 

gender, disability, religion, sexual orientation, 

ethnicity, socio-economic class) of the person 

supported and his/her social network.

• Honor the choices, preferences, abilities and opinions 

of the people I support.

• Protect the privacy of the people Isupport.

• Interact with the people I support in a manner that is 

respectful to them.

• Provide opportunities for the people I support to be 

viewed and treated with respect and embraced as 

integral, contributing members of their communities.

• Promote the use of language that is respectful, 

sensitive and contemporary.

• Practice positive intention and transparency in my

interactions.

Relationships:

As a DSP, I will assist the people I support to develop and 

maintain relationships.

Furthermore, as a DSP, I will:

• Advocate with the people I support when they do not 

have opportunities to build and maintain 

relationships.

• Recognize the importance of maintaining reciprocal 

relationships and proactivelyfacilitate relationships 

between the people I support, their family and 

friends.

• Assure that people have the opportunity to make 

informed choices in safely expressing their sexuality.

• Separate my personal beliefs and expectations 

regarding relationships (including sexual relationships) 

from those of the people I support. If I am unable to 

separate my own beliefs and preferences in a given 

situation, I will remove myself from the situation and 

seek the assistance of a qualified coworker.

• Refrain from expressing negative views, harsh 

judgments, and stereotyping of people.
Report to the President 2017: America’s Direct Support Workforce Crisis 54

Self-Determination:

As a DSP, I will assist the people I support to direct the 

course of their own lives.

Furthermore, as a DSP, I will: • Support the rights of individuals to lead self

-

directed lives, working in partnership withother

members of the person’s support network.

• Promote self-determination in physical,

intellectual, emotional, social and spiritua

l

pursuits.

• Honor a person’s right to assume risk in an

informed manner.

• Recognize that each individual has potentialfo

r

lifelong learning and growth.

• Celebrate, accept and learn from life’s rich

experiences with people through triumphs and

failures.

Advocacy:

As a DSP, I will advocate with the people I support for 

justice, inclusion, and full community participation.

Furthermore, as a DSP, I will: • Support people to speak for themselves in all

matters, and offer my assistance when needed.

• Represent the best interests of people who cannot

speak for themselves by partnering with the

individual and their support team to gather

information and find alternative means of

expression.

• Advocate for laws, regulations, policies, and

procedures that promote justice andinclusion for

all people with disabilities.

• Promote human, legal, and civil rights for all

people and help those I encounter to

understand these rights.

• Seek additional advocacy services when those

that I provide are not sufficient.

• Seek out qualified guidance when I am unsure of

the appropriate course of action in my advocacy

efforts.

• Recognize that those who victimize peoplewith

disabilities must be held accountable.

Revised & Approved, NADSP Board of Directors 

April 12, 2016
President’s Committee for People with Intellectual Disabilities 55

APPENDIX C - JOINT POSITION STATEMENT ON THE DSP

WORKFORCE ON BEHALF OF AAIDD AND NADSP

STATEMENT

Individuals with intellectual and developmental 

disabilities (IDD) have long sought lives where they can 

be fully contributing and valued members of their 

communities. Federal regulations including the 

Americans with Disabilities Act (ADA), and more 

recently the Centers for Medicare & Medicaid Services

(CMS) Home and Community-Based Services (HCBS) 

Settings Rule and the US Department of Labor 

Workforce Innovation and Opportunity Act (WIOA) 

have set forth standards aimed at making inclusion and 

employment a reality. The availability of a qualified, 

competent and stable Direct Support Workforce plays 

an important role in supporting people to accomplish

these goals. To be successful, it is critical that Direct 

Support Professionals (DSPs) have the competence, 

confidence, ethical decision-making skills and guidance 

necessary to provide quality support, receive 

compensation that is commensurate with job 

responsibilities and have access to a career path aligned 

with ongoing professional development.

ISSUES

The stability of the direct support workforce has been a 

long-standing issue across disability service systems. 

The field is plagued with high turnover at a time when 

demand for additional direct support professionals to 

support both disability and aging populations in the 

United States is peaking. It is estimated that nationally 

more than one million new direct support positions will 

need to be filled by 2022. This growing demand 

combined with limited availability of training and 

education and increased expectations and 

requirements make it essential that there be increased 

investment in this vital workforce.

The United States is at a critical juncture where 

workforce development, education and disability service 

systems must implement strategies to increase the 

capacity and quality of the direct support workforce. 

Action is necessary if we are to provide the support 

people with IDD need to live and participate in their 

communities. Self-advocates and family-advocates have 

fought hard for decades to ensure that supports 

provided are personcentered, increase inclusion, and lead to valued lives for 

people with intellectual and developmental disabilities. 

Researchers, practitioners, providers and policy-makers have 

recommendedrecruitment, retention, and education 

strategies to addressthis critical workforce need; however, 

they have yet to be sufficiently funded or brought to scale. If 

the charge to address the workforce crisis is not acted upon, 

the entire disability service system is at risk of going back to 

days of institutionalization, segregation, and stigmatization, 

turning the clock back on decades of advocacy and 

disregarding the voice of people with developmental 

disabilities across the country.

LOW WAGES

Wages paid to direct support professionals are 

comparable to those paid for entry level low wage 

positions in nearly all service industries. Insufficient 

wages affect workforce retention and the quality of 

support provided. There is a significant discrepancy 

between the job responsibilities and skill 

expectations required of DSPs and their low wages. 

Nearly half of direct support workers in the U.S. rely 

on public benefits. Others often work two to three 

jobs to support themselves and their families. 

Wages need to be increased. This, combined with 

other work-related stressors, lead to DSP turnover 

which results in ineffective and inconsistent 

support for people with IDD.

LIMITED TRAINING, CAREER PATH AND 

CREDENTIALING OPPORTUNITIES

The DSP role is complex because it is about supporting each 

individual in a person-centered way within their unique 

context. The workforce must have the knowledge, skills, and 

ethical compass to perform a wide array of tasks that support 

people with intellectual and developmental disabilities to be 

healthy, safe, valued and participating members of their 

communities. To achieve this, it is important that DSPs receive 

sufficient, high-quality training and opportunities for paid 

professional development on an ongoing basis.

No federal minimum training requirements exist for 

DSPs. Career pathways that provide DSPs an 

opportunity to increase competency and
Report to the President 2017: America’s Direct Support Workforce Crisis 56

professionalism is a recommended strategy to improve 

retention of the workforce and quality of support. The 

National Alliance for Direct Support Professionals (NADSP) 

and the Centers for Medicare & Medicaid Services(CMS) 

have identified nationally validated competencies for DSPs 

that recognize the knowledge, skills and abilities need by 

DSPs to effectively support individuals with disabilities in 

the community. Several national organizations offer 

credential programs for DSPs who support people with IDD 

in varied roles. Despite the identification of required 

competencies, related credentialing and guidance [1] from 

Medicaid about how to build training into HCBS 

reimbursement rates [2], use of established competencies 

to set workforce development and training standards is not 

widespread.

INEFFECTIVE SUPERVISION AND 

ORGANIZATIONAL SUPPORT

DSPs are faced with fulfilling an increasing number of 

responsibilities in more autonomous situations. This 

will require that they be provided the professional 

development opportunities and have the support 

they need to ensure they are competent to provide 

support and be successful in their work. The 

supervision they receive is frequently inconsistent 

and ineffective. This can result from frontline 

supervision being the default career ladder for DSPs, 

often achieved without the requisite preparation 

necessary to succeed. It is important that supervisors 

are competent in critical skills to being an effective 

supervisor in long term services and supports for 

people with disabilities.

DSPs must be supported to effectively understand and 

utilize person-centered approaches designed to 

increase community inclusion for people with 

intellectual and developmental disabilities. Often 

systems and organizations promote these concepts but 

do not shift their organizational culture and practices 

to align with them. These changes may include 

increased use of technologies, flexible staffing 

patterns, and providing DSPs with the education and 

resources they need to make connections and build 

capacity within the community.

POSITION

Evidence-based practice must be widely implemented 

to increase the ability of individuals,

families and employers to recruit, retain, and ensure the 

competence of DSPs to improve the quality of life and 

outcomes of supports provided to people with IDD. A 

comprehensive approach to address the need to build 

capacity within the direct support workforce, which 

should include the following:

• Allocate federal and state funding at levels sufficient

to provide living wages and the benefits necessary to

attract and retain qualified DSPs in home and

community-based services.

• Provide credentialing opportunities, career

pathways, and ongoing competency-based

training and mentoring, embedded in public

policy and sufficiently funded to create

incentives for DSPparticipation.

• Ensure frontline supervisors are adequately trained

and support to effectively recruit, retain and

support DSPs.

• Implement and evaluate the use of technologies as a

universally-designed option for support while

simultaneously providing relief to the increased

demand for support and support workers.

• Ensure DSPs have opportunities for needed

training, mentoring and professional

development to effectively assist people with

IDD to be fully included, valued, and

participating members of their communities.

Adopted:

Board of Directors,

American Association on Intellectual and 

Developmental Disabilities

May 18, 2016

Board of Directors,

National Alliance for Direct Support Professionals 

May12, 2016

[1] Robbins, E., Dilla, B., Sedlezky, L., Sirek, A.J. (2013). Coverage of

Direct Service Workforce Continuing Education and Training within

Medicaid Policy and Rate Setting: A Toolkit for State Medicaid

Agencies. The Lewin Group. Retrieved from: https://

www.medicaid.gov/medicaid-chip-program-information/bytopics/long-term-services-and-supports/workforce/downloads/ dswtraining-rates-toolkit.pdf

[2] Centers for Medicare & Medicaid Services (2015). Questions and 

Answers: Administrative Claiming Related to Training and Registry

Costs. Retrieved from: https://www. medicaid.gov/medicaid-chipprogram-information/by-topics/ financing-andreimbursement/downloads/qa-training-registrycosts-071015.pdf
President’s Committee for People with Intellectual Disabilities 57

APPENDIX D - IMPLEMENTING DIRECT SUPPORT PROFESSIONAL 

CREDENTIALING IN NEW YORK

KEY DESIGN ELEMENTS OF THE NEW YORK 

DIRECT SUPPORT PROFESSIONAL (DSP) 

CREDENTIALING MODEL

1. Multi-tiered credential with a hybrid model of

learning methods. The Credentials must be

achieved in sequence, beginning with DSP

Credential I. Proposed training opportunities

include on-line training, interactive classroom

learning and work-based learning

opportunities—

a. DSP Credential I includes 50 hours of training:

20 hours on-line, 10 hours classroom training,

and 20 hours of work-based learning

b. DSP Credential II includes 100 hours of

training: 40 hours on-line, 20 hours classroom

training, and 40 hours of work-based learning

• Includes a specialization emphasis in one of

four areas: Supporting Older Adults,

Behavioral Support, Autism Spectrum

Disorders, or Complex MedicalNeeds.

c. DSP Credential III (Mentor) includes 40 hours

of training: 12 hours on-line, 8 hours classroom

training, and 20 hours of work-based learning.

• Includes an emphasis on person-centered

planning, as well as preparingmentors to

support other learners through

credentialing.

d. Frontline Supervision and Management

Credential includes 40 hours oftraining:

20 hours on-line, 5 hours classroom, and 15 

hours work-based learning. It may be

completed after achieving the DSP Credential

2. Valid, recognized competency-based skills and

knowledge requirements. These are the identified

outcomes that will be assessed across the credential

program. The competencies used as the basis of the

credentialing program are —

a. New York State DSP Core CompetencyGoals

• Putting people first

• Building & maintaining positive

relationships

• Demonstrating professionalism

• Supporting good health

• Supporting safety

• Having a home

• Being active and productive in society

b. National Frontline Supervisor (FLSs)

Competencies. These also used in NADSP’s

Credentialing for Frontline Supervisors

• Direct support

• Health, wellness, and safety

• Participant support plan development,

monitoring, and assessment

• Facilitating community inclusion across the

lifespan

• Promoting professional relations and

teamwork

• Staff recruitment, selection, and hiring
Report to the President 2017: America’s Direct Support Workforce Crisis 58

• Staff supervision, training, and development

• Service management and quality assurance

• Advocacy and public relations

• Leadership, professionalism, and selfdevelopment

• Cultural awareness and

responsiveness

3. Voluntary enrollment at employer’s discretion.

DSPs will not be mandated to complete credentials

in order to serve as a DSP. DSPs must satisfactorily

complete their employer’s required probationary

period beforebeginning credential training.

Additionally, DSPs must complete the following

years of service to qualify for credential

assessments —

a. DSP Credential I Assessments may be completed

only after the DSP has clocked at least 1 year of

full-time employment as a DSP.

b. DSP Credential II Assessments may be completed

only after the DSP has clocked at least 2 years of

full-time employment as aDSP.

4. Incremental annual enrollment growth targets

over five years —

Annual targeted growth —

1st Cohort = Yrs. 1 & 2 = 3 percent of DSPs statewide

2nd Cohort = Yrs. 2 &3 = add 2 percent of

DSPs statewide

3rd Cohort = Yrs. 3 &4 = add 5 percent of

DSPs statewide

4th Cohort = Yrs. 4& 5 = add 5 percent of

DSPs statewide

5th Cohort = Yrs. 5 & 6 = add 5 percent of

DSPs statewide

5. Employers will receive rate incentives to cover

educational costs and increased DSPwages.

Employers will be awarded these incentives if

they meet per-determined enrollment

thresholds (e.g. 3 percent, 5 percent, 10

percent). Wage incentives will be awarded to

DSPs with successful completion of

assessments at each credential level.

6. Individuals with disabilities will be involvedin

on-line, classroom, and work-based educational

components.

7. Program governance will be overseen by an

independent, third-party credentialing program

body. This will be a newly established governing

body who will provide recommendations for

curriculum and assessment at each level of the

credential —

a. Assessment will include on-the-job skill

demonstration by the supervisor or skill

mentor (initial, proficient and advanced

levels), response to scenario testing (initial

and proficient levels) and written test

(advanced and specialized levels).

b. The governing body will also provide guidance

on curriculum by identifying required

instructional criteria for approved instructional

programs.

c. A Request for Proposal could be released by the

Office for People with Developmental

Disabilities (OPWDD) to determine credentialing

organization.

8. A Board of Directors will guide and inform the

governing body. The Board of Directors will include

DSPs, FLSs, provider organizations, individuals with

intellectual anddevelopmental disabilities, family

members, content experts and individuals with

expertise in credentialing/ certification and

instructionaldesign.

9. A Grandperson Clause will allow experienced DSPs

and FLSs chosen by their employers to be assessed for

the credential without coursework. Such experienced

DSPs and FLSs must complete the probationary period

at least two years prior to the implementation of the

credentialprogram.

10. Completion of continuing education requirement of

36 hours every three years in order to keep the

credential active. Certified DSPs and FLSs submit

qualifying activities to the governing body. Acceptable

continuing education units are those whose topics are

directly aligned with the content of the New York DSP

Core Competencies published by OPWDD. This

requirement applies to newly certified DSPs after they

renew their registration for the first time.

11. Overall evaluation of credentialing program on

service quality. Program effectiveness will be

monitored on a statewide and organizational level

using longitudinal indicators, such as retention

rates, injury rates, and reduction of avoidable

hospitalizations.
President’s Committee for People with Intellectual Disabilities 59

PRESIDENT’S COMMITTEE ON PERSONS WITH

INTELLECTUAL DISABILITIES

CITIZEN MEMBERS

Jack Martin Brandt, Chair

Richmond, Virginia

Max Barrow

Montpelier, Vermont

Peter V. Berns

Washington, D.C.

James T. Brett

Boston, Massachusetts

Kenneth Capone

Elkridge, Maryland

Ryan D. Easterly

Redwood City, California

Micah Fialka-Feldman

Syracuse, New York

Merril A. Friedman

Washington, D.C.

Tawara D. Good, MA

Washington, D.C.

Dan Habib

Concord, New Hampshire

Zachary W. Holler

Clayton, Ohio

Lisa M. Pugh

Stoughton, Wisconsin

Michelle “Sheli” Reynolds, PhD

Prairie Village, Kansas

Rebecca S. Salon, PhD

Washington, D.C.

Deborah Spitalnik, PhD

New Brunswick, New Jersey

Ricardo T. Thornton, Sr.

Washington, D.C.

Elizabeth Weintraub

Rockville, Maryland

Betty Williams

Richmond, Indiana

EX OFFICIO MEMBERS AND

REPRESENTATIVES

The Honorable Jeff Sessions

Attorney General, U.S. Department of Justice

Represented by:

To be determined

Benjamin “Bo” Tayloe, Jr.

Deputy Chief

Civil Rights Division, Special Litigation Section, U.S. 

Department of Justice

Alternate Contact:

Clarette Yen

Attorney Advisor, Disability Rights

U.S. Department of Justice

The Honorable Ryan Zinke

Secretary, U.S. Department of the Interior 

Represented by:

To be determined

Mary Pletcher

Deputy Assistant Secretary for Human Capital and

Diversity

U.S. Department of the Interior

Alternate Contact:

Margaret Triebsch

Committee Management Officer

U.S. Department of the Interior

The Honorable Wilbur Ross

Secretary, U.S. Department of Commerce 

Represented by:

To be determined

Tinisha Agramonte*

Director, Office of Civil Rights

U.S. Department of Commerce 

Alternate Contact:

Kathy Anderson

Deputy Director, Office of Civil Rights

U.S. Department of Commerce

The Honorable R. Alexander Acosta

(Unconfirmed)

Secretary, U.S. Department of Labor 

Represented by:

To be determined
Report to the President 2017: America’s Direct Support Workforce Crisis 60

Jennifer Sheehy

Acting Assistant Secretary for Disability Employment 

Policy

U.S. Department of Labor

Alternate Contact:

Michael Reardon

Supervisory Policy Advisor, Office of Disability 

Employment Policy

U.S. Department of Labor

The Honorable Tom Price*

Secretary, U.S. Department of Health and Human 

Services

Represented by:

Melissa L. Harris (Tentative)

Senior Policy Advisor

Disabled and Elderly Health Program Group, 

Centers for Medicare & Medicaid Services

U.S. Department of Health and Human Services 

Alternate Contact:

Tina Urv, PhD

Program Director

National Institutes of Health

U.S. Department of Health and Human Services

The Honorable Ben Carson

Secretary, U.S. Department of Housing and Urban

Development

Represented by: To 

be determined

Michelle Aronowitz

Deputy General Counsel for Enforcement and Fair

Housing

U.S. Department of Housing and Urban

Development

Alternate Contact:

Charlene Wills 

Trial Attorney

Office of General Counsel

U.S. Department of Housing and Urban 

Development

The Honorable Elaine Chao

Secretary, U.S. Department of Transportation 

Represented by:

To be determined

TBD

Deputy Chief of Staff, Office of the Secretary Acting 

Director, Departmental Office of CivilRights

U.S. Department of Transportation 

Alternate Contact:

Yvette Rivera

Associate Director, Equal Employment Opportunity 

Programs Division

U.S. Department of Transportation

The Honorable Betsy DeVos

Secretary, U.S. Department of Education

Represented by:

To be determined

Sue Swenson*

Deputy Assistant Secretary

Office of Special Education and Rehabilitative 

Services

U.S. Department of Education

The Honorable John F. Kelly*

Secretary, U.S. Department of Homeland Security 

Represented by:

Brian S. Parsons (Tentative)

Senior Policy Advisor, Office for Civil Rights and Civil 

Liberties

U.S. Department of Homeland Security

The Honorable TBD

Chief Executive Officer, Corporation for National and 

Community Service

Represented by:

Stephanie Enyart (Tentative)

Disability and Inclusion Advisor

Corporation for National and Community Service

The Honorable Nancy A. Berryhill

Acting Commissioner, U.S. Social 

Security Administration

Represented by:

Leola Brooks

Senior Advisor for Disability Program

Outreach, Office of Retirement & Disability Policy

U.S. Social Security Administration

The Honorable TBD

Chair, U.S. Equal Employment Opportunity 

Commission

Represented by:

Ashley Martin (Tentative)

General Attorney

U.S. Equal Employment Opportunity Commission
President’s Committee for People with Intellectual Disabilities 61

Mary Kay Mauren*

Senior Attorney/Advisor

U.S. Equal Employment Opportunity Commission

The Honorable Clyde E. Terry Chairperson, 

National Council on Disability Represented by:

Gary Blumenthal*

Council Member

National Council on Disability

*Representative of ex officio members while writing the

report

STAFF

Bob Williams (Acting)

Commissioner, Administration on Disabilities, PCPID,

Designated Federal Officer

Allison Cruz

Director, AIDD–Office of Innovation

Madjid “MJ” Karimi, PhD, CPH*

Team Lead and Report Project Manager

Sheila Whittaker

Program Assistant

*Staff while writing the report

ACKNOWLEDGMENTS

The Committee acknowledges the assistance of Amy

Hewitt, PhD (contractor), working with Charlie Lakin,

PhD, Claire Benway and Julie Kramme, MA, of the 

Research and Training Center on Community Living,

University of Minnesota, and Joe MacBeth, Executive

Director of the National Alliance for Direct Support 

Professionals, for their preparation of this Report. 

Additionally, we would like to thank all of the individuals 

with ID/DD, family members and organizations that

shared their information and stories about the direct

support workforcecrisis.

The Administration for Community Living 

The Administration on Disabilities

The President’s Committee for People with 

Intellectual Disabilities

Mary E. Switzer Memorial Building 

330 C Street, S.W.

Washington, D.C. 20500

Phone: (202) 795-7374

Website: http://www.acl.gov/programs/aidd/

Programs/PCPID/