The President’s Committee for 

People with Intellectual Disabilities (PCPID)

Business Meeting

July 28, 2022

12:00 PM to 4:00 PM EST
Call to Order, Welcoming Remarks, and 

Meeting Overview

2

Jim Brett

PCPID Chair
3

Welcome Remarks from Administration 

for Community Living

Alison Barkoff

Acting Administrator

Administration for Community Living

Jill Jacobs

Commissioner, Administration on Disabilities

Administration for Community Living
Results from Internal PCPID 

Member Survey and Public Input; 

Overview of Past PCPID Reports Issued

4

David Jones

Director, Office of Intellectual and Developmental Disabilities

Administration for Community Living
I. PCPID Member Survey

5
PCPID Member Feedback –

Narrative Questions

6

• Q1: What are the biggest policy barriers to community living for people with 

intellectual disabilities?

• Q2: What are innovative practices within federal, state, or local programs that 

promote effective delivery of services and supports for people with intellectual 

disabilities?

• Q3: What has been the greatest impact of the COVID-19 pandemic on people with 

intellectual disabilities?

• Q4: What are important issues facing individuals with intellectual disabilities who 

are a part of racial and ethnic minorities, economically disadvantaged communities, 

and/or rural communities?
PCPID Member Feedback – Ranking Issues [Q5]

7
PCPID Member Feedback –

Administrative Feedback

8

• Q6: Please check off which dates you are available to meet virtually this summer for 

a full committee meeting.

• Q7: Would you be interested in chairing a workgroup during your term?
II. Public Input Feedback to PCPID

9
III. PCPID Published Reports

10
Historical Published PCPID Reports (2011– 2017)

11

• 2017 – America’s Direct Support Workforce Crisis: Effects on People with Intellectual 

Disabilities, Families, Communities, and the U.S. Economy

• 2016 – Strengthening an Inclusive Pathway for People with Intellectual Disabilities and 

Their Families

• 2015 – Leveling the Playing Field: Improving Technology Access and Design for People 

with Intellectual Disabilities

• 2012 – Managed Long-Term Services and Supports

• 2011 – People with Intellectual Disabilities: Critical Supports that Promote Independence, 

Full and Lifelong Community Inclusion
Briefing on Emerging Issues –

Leading Three Takeaways

12

Home and Community Based Services (HCBS)

Nancy Thaler

Senior Policy Advisor

Administration for Community Living

Employment

John Butterworth 

University of Massachusetts Boston

Institute for Community Inclusion

Jean Winsor

University of Massachusetts Boston

Institute for Community Inclusion

Education

Catherine Fowler

University of North Carolina Charlotte

Cato College of Education

Housing

Sheryl Larson

University of Minnesota

Institute on Community Integration

Direct Support Professional Workforce Crisis

Amy Hewitt

University of Minnesota

Institute for Community Inclusion
Home and Community Based Services (HCBS)

13

Nancy Thaler

Senior Policy Advisor

Administration for Community Living
Overview of HCBS Topics to be Covered

14

• People Served

• People Waiting for Services

• The Workforce Crisis

• Quality and the HCBS Rule
People Served in the HCBS Waiver Program

15

• 1.8 million people receiving 1915 (c) 

services

• 267 approved 1915 (c) waivers in 46 

states & DC 

• Participants with ASD/ID/IDD and 

who are Medically Fragile comprise 

over 50% of the participants and 

utilize 67% of expenditures.

• ASD/ID/DD

• 114 waivers for 741,600 people (41.2%)

• Expenditures in the top quartile states

• $68,000 - $123,000

• Medically Fragile

• 25 waivers for 162,000 people (.9%)

• Expenditures in the top quartile of states

• $68,000 to $184,000

• Children SED

• 17 waivers - no of people unknown

• Expenditures unknown
Leading Three HCBS Key Takeaways

16

• Waiting Lists to Enroll in Medicaid HCBS Services

• Impact of State Budgets

• Access to Service

• Impact of the Direct Care Crisis

• Quality of Services – and the HCBS Rule

• Choice

• Inclusion

• Rights
Waiting List – Using Several Data Points

17

https://risp.umn.edu/infographics

University of Minnesota Institute on Community Integration
Number of People with ID/D Receiving Services in 

the Community – a State by State Picture

18

https://risp.umn.edu/infographics

University of Minnesota Institute on Community 

Integration
19

The HCBS Workforce 

Crisis

• 1.3 million new workers will be

needed by 2029

• The demand for services is 

growing faster than the labor pool

• People are at risk. The workforce 

shortage is limiting the ability of 

federal programs to safely maintain 

people in their homes and 

communities. 
20

Quality and the HCBS Rule

1. The setting was selected by the individual. 

2. The individual participates in unscheduled and scheduled community 

activities in the same manner as individuals not receiving Medicaid HCBS 

services. 

3. The individual is employed or active in the community outside of the setting. 

4. The individual has his/her own bedroom or shares a room with a roommate 

of choice. 

5. The individual chooses and controls a schedule that meets his/her wishes in 

accordance with a person-centered plan. 

6. The individual controls his/her personal resources. 

7. The individual chooses when and what to eat. 

8. The individual chooses with whom to eat or to eat alone.

9. Individual choices are incorporated into the services and supports received. 

10. The individual chooses from whom they receive services and supports. 

11. The individual has access to make private telephone calls/text/email at the 

individual’s preference and convenience. 

12. Individuals are free from coercion. 

13. The individual, or a person chosen by the individual, has an active role in the 

development and update of the individual’s person-centered plan. 

14. The setting does not isolate individuals from individuals not receiving 

Medicaid HCBS in the broader community. 

15. State laws, regulations, licensing requirements, or facility protocols or 

practices do not limit individuals’ choices.

16. The setting is an environment that supports individual comfort, 

independence and preferences. 

17. The individual has unrestricted access in the setting. 

18. The physical environment meets the needs of those individuals who require 

supports. 

19. Individuals have full access to the community. 

20. The individual’s right to dignity and privacy is respected. 

21. Individuals who need assistance to dress are dressed in their own clothes 

appropriate to the time of day and individual preferences. 

22. Staff communicates with individuals in a dignified manner. 
EMPLOYMENT

21
Employment

Emerging Services and the New 

Reality

John Butterworth

Jean Winsor

July 28, 2022
Number in Employment and Day Services

700,000

650,057

600,000

500,000 Non-work

400,000

300,000

200,000 Facility-based work

21.7% 100,000

Integrated employment Highest 

0 since 2001

1990 1996 2004 2012 2020

Source: ICI National Survey of State IDD Agencies
Participation in integrated employment services 

100%

80%

60%

40%

20%

0%

Source: ICI National Survey of State IDD Agencies
Source: National Core Indicators 
What Families Said 

Was Helpful During 

COVID-19 and Wish 

to 

Keep/Adapt/Expand

Peer to 

Peer

Self 

Advocacy 

Peer to Peer

More 

Individualized

Person 

Learned 

New Skills 

Source: Fall 2020 Innovation Roundtable discussions from the 

Community of Practice for Supporting Families project
Systems: 

What We Have – What People Want 

Program Model 

Hours and activities defined by 

program 

Individualized 

Person-Centered 

Model 

Work; socialization; continuous 

adult learning; civic 

participation; support hours 

flexible and defined by person 
Employment	is	a	basic	part	of	

how	we	connect	many	of	the	

“important	to”	aspects	of	life	

such	as	relationships	and	

social	roles,	status,	routines,	

places	to	go,	enjoyable	or	

activities	that	allow	for	

increased	opportunity	in	life.

Our work is not isolated from the rest of lives,

rather it is woven into it
Employment Relates to Everything

The ID system needs:

1. A clear pathway from non-work to work

2. Belief that people can work and responsive goals and 

action steps

3. A fundamental shift in how we approach supports
John Butterworth

john.butterworth@umb.edu

Jean Winsor

Jean.winsor@umb.edu

www.ThinkWork.org

www.selnhub.org

www.StateData.info
Additional Resources

Employment: How we measure success

State Employment Leadership Network

Guidance for conversations: Identifying and designing pathways towards 

rewarding employment

State Employment Leadership Network

Agency Change Toolkit: Ten elements of organizational transformation

Institute for Community Inclusion, UMass Boston

Community Life Engagement Toolkit

Institute for Community Inclusion, UMass Boston

Weathering the pandemic: Employment and day service delivery

Rie Kennedy-Lizotte & John Butterworth
EDUCATION

32
33

PCPID/ EMERGING 

ISSUES: EDUCATION

Catherine Fowler, PhD/ UNC Charlotte and 

National Technical Assistance Center on Transition: the Collaborative
34

Educational Environments of Students with 

Intellectual Disabilities

Percent of All Students with Percent of Students with ID

Disabilities

Majority of School Day in Regular Classroom Setting Partial School Day in Regular Classroom Setting

Majority of School Day in a Separate Setting

100

80

60

40

20

0
35

Predictors of Post-School Success for 

Students with Intellectual Disabilities

Inclusion in 

General Education

Community 

Experiences

Career Awareness

Work Experiences

Paid Work

Career and 

Technical Education

Autonomy

Empowerment

Communication 

(including AT)

Family 

Expectations
36

Capitalizing on Opportunities

WIOA

Perkins 

V 

IDEA

AT Act

HEOA

DDA

...
37

3 Key Take Aways

Interdisciplinary and Interagency 

Coordination are Critical

Investing in Work Based Learning 

Experiences in Integrated Settings 

is Essential

Young People Must Have 

Access to Communication 

Tools
38

Resources Relevant to Students with ID

→ Work-Based Learning for Students with High Support Needs

→ Predictor Implementation Self-Assessment and List of 

Predictors of Post-School Success

→ Developing School-Community-Business Partnerships

→ National Report on Employment Services (ICI)

→ Perkins State Plans and Data Explorer (OCTAE)

→ Inclusive Postsecondary Education (ThinkCollege)
39

Follow-up on Education

→ www.transitionta.org

→ ntact-collab@uncc.edu

→ Catherine Fowler, chfowler@uncc.edu
HOUSING
Housing and Residential 

Services for People with IDD

July 28, 2022

Sherri Larson, Ph.D. Director, 

Residential Information Systems Project

University of Minnesota

Institute on Community Integration
Key Issues

Supporting 

Families

Access to 

Supports

Housing
I. Supporting Families
Living 

Arrangements

• Most people with IDD 

live with family members

– 85% of people with IDD in 

the United States

– 59% of long-term 

supports and services 

recipients

• Huge state variations

• Deinstitutionalization 

continues
Growth in Medicaid Waiver Support for People who 

Live with a Family Member

Family No Waiver Family with Waiver 792,030 

714,910 

661,166 483,367 634,988 592,180 427,910 569,020 588,594 386,138 340,702 482,479 503,641 253,302 286,061 224,264 

391,859 184,386 149,534 325,650 105,682 

80,799 

1998 2000 2002 2004 2006 2008 2010 2012 2014 2016 2018
II. Access to Supports
Access to Supports (2018)

• State IDD Agencies 

serve

– 46% of adults with IDD

– 11% of children with IDD

• 200,000+ people were 

waiting for Medicaid 

Waiver funded supports

• Adult prevalence 

estimates are very old
Adult LTSS Recipients per 100,000 by State

058

• 252 per 100,000 average

692

• 73 to 805 people per 100,000 range

515

HCBS Waiver ICF/IID

439

446

377

382

395

400

404

416

353

371

295

312

272

276

281

285

248

252

253

204

207

209

212

216

226

168

170

174

175

177

184

189

193

203

153

154

155

161

112

127

134

137

142

9899

73

75

79

85

NV NM AZ FL SC CO VA NJ NC TX OK IL MA UT LA CT CA RI DC ID SD AK MD WI VT OR
III. Individualized Supports
Individualized Supports

• Required for Medicaid Home and Community Based Services 

funding

• People in smaller settings have more choice, are more satisfied 

and have better outcomes.

• Settings that best support individualized services

– A person’s own home with supports as needed

– A host or foster family home

– Family Home

– Small group settings of three or fewer people getting supports
Living Arrangements Other than Family Home

Congregate 4+ people

1... 242,093 63,279 62,669 

2... 248,734 90,969 86,694 

2... 258,085 85,563 104,386 

2... 250,718 102,644 127,455 

2... 262,306 127,459 125,078 

2... 245,943 145,066 153,092 

The size of congregate settings continues to decrease but some families want to build new congregate settings 

such as intentional communities or farmsteads.
Challenges

Prioritize supports for 

people living with family

members or in 

individualized settings 

Access to supports differs

within and across states

200,000 + people are 

waiting

Providing individualized 

supports requires 

affordable accessible 

housing
Supplementary Resources
Resources

Residential Information Systems Project https://risp.umn.edu/

30 years of Community Living https://acl.gov/30years

IMPACT newsletter (https://ici.umn.edu/series/14)

ACL’s Housing and Services Resource Center https://acl.gov/HousingAndServices

Institute on Community Integration Policy Research Briefs and Policy Forums 

http://z.umn.edu › icipolicyforum

Charting the Lifespan for Families of Individuals with IDD 

https://supportstofamilies.org/
ICF/IID Use Declines as HCBS Waiver Use Explodes

140,752 

70,046 

879,062 

Number of Recipients

1982 1987 1992 1997 2002 2007 2012 2018

ICF/IID Recipients

ICF/IID Intermediate Care Facilities of 

Individuals with Intellectual Disabilities
Contact Information

Sheryl Larson, Ph.D. Research Manager 3

612.624.6024 larso072@umn.edu

Research and Training Center on Community Living

Institute on Community Integration (UCEDD) 

University of Minnesota, Twin Cities

Office 1-338

2025 East River Parkway, Minneapolis, MN 55414

The University of Minnesota Twin Cities is located on traditional, ancestral, and contemporary lands of Indigenous people
DIRECT SUPPORT PROFESSIONAL 

WOFKORCE CRISIS
Direct Support Professional Workforce Crisis

58

Amy Hewitt

University of Minnesota

Institute on Community Inclusion
A 30 year National 

Problem

Low wages

Unaffordable 

benefits

Limited training 

& development

Lack of career 

advancement 

opportunities

Challenges in 

recruiting and 

retaining highquality employees

+

Low quality 

services and poor 

outcomes for 

people receiving 

supports
Things we know about DSPs

Primary wage earners ~70% (Hewitt et al 2021)

Disproportionately women 84%

Disproportionately BIPOC 55.4% (NCI, 2020)

Mean wage $13.61 (Nat’l NCI, 2022)

Rely on public assistance ~50% (PHI, 2020)

PT/FT status

Part time 31% (Nat’l NCI, 2020)

Full time 69% (Nat’l NCI, 2020)

Turnover rate 40% (Nat’l NCI, 2020)

Terminated from their positions 17% (Nat’l NCI, 2020)

Vacancy rate 12.3% (FT); 16.4% (PT) (NCI, 2020)

Education 73% education beyond h.s.; 27% h.s. only (Hewitt et al 2021)
Direct care job openings 2018 - 2028

PRE-pandemic!
Then COVID-19......

• Only 30% reported extra money working as essential workers

• Of those majority $1 – 2

• Disparities evident in wages and household incomes

• Disruption and change

• work patterns, schedules, locations, type

• Extreme hours worked

• Majority had decline in work-life status (worse or much worse 54%)

• Mental health and wellness challenges

• Physical and emotional burnout 50%

• Anxiety 47%

• Sleep difficulties 38%

Source: Hewitt et al, 2021

Policy Research Brief

Policy Forum
Mental health 

support

• Employee assistance

• Ensure health plans have

robust mental health 

coverage

• Wellness training and 

support programs

• Financial, childcare and 

caregiver community 

connections
Other recommendations

Ensure the DSP workforce is 

identified as essential workers

with same benefits in every 

state, DC and US territory

Identify, address and 

eliminate wage disparities at 

organizational, state and 

national levels within this 

workforce

Professional recognition and 

wage equity for all DSPs

Pay wage that correlates with 

skills and enhance wages 

through career paths that 

recognize new skill 

development with higher 

wages

Eliminate wage compression 

through better methods for 

getting wage increases to 

DSPs

Find solutions in lessons 

learned from other female 

dominated professions (e.g., 

nursing, teaching, social 

work)
Contact Information

Amy Hewitt - University of Minnesota

• Email: hewit005@umn.edu

PCPID Member Question and Answer 

to the Panel Presenters

67
Break

15 minutes

68
Public Input Feedback to PCPID

69
PCPID Member Reflection on Emerging Issues

70

• As a committee member, what do you believe is the 

leading issue(s) that needs to get addressed by the 

PCPID and why?

• Committee Members Nominate Topics
Break

5 minutes

71
PCPID Committee Member 

Online Voting

72
73

Closing Remarks

Jill Jacobs

Commissioner, Administration on Disabilities

Administration for Community Living

Jim Brett 

Chair, PCPID
THANK YOU 

74