The President’s Committee for 

People with Intellectual Disabilities (PCPID)

Full Committee Meeting

May 1, 2023

12:00 PM to 5:00 PM EST
Call to Order, Welcoming Remarks, and 

Meeting Overview

Jim Brett

PCPID Chair

2
Welcoming Remarks from Administration for 

Community Living

Alison Barkoff

Acting Administrator, ACL

Jill Jacobs

Commissioner, ACL

3
Summary of Public Comments Received

David Jones

Director, Office of Intellectual and 

Developmental Disabilities

4
HCBS / Direct Support Professionals
HCBS / Direct Support Professionals

Workgroup Members

Co-Chairs:

– Nicole Jorwic, Citizen Member

– Joe Macbeth, Citizen Member

– Tia Nelis, Citizen Member

Members:

– Kara Jones, Citizen Member

– Cathy Kanefsky, Citizen Member

– Hillary Dunn Stanisz, Citizen Member

– Wendy Strauss, Citizen Member

– Jodie Sumeracki, Ex Officio Member

– Liz Weintraub, Citizen Member

6
HCBS / Direct Support Professionals

Issues Surfaced by Workgroup

• Low wages for DSP Workers;

• Limited technology solutions;

• Poor business acumen and workplace culture;

• Marketing and recruitment to expand the pool of workers;

• Explore and expand Self Direction Models;

• Need to create unique personal identity;

• Lack of professional standards; and

• Lack of career ladders and credentialing opportunities.

7
Workforce Challenges

Workforce issues such as recruitment, retention and training of direct support 

workers have always plagued community services to people with I/DD.

Unfortunately, there is no surplus of people willing to become direct support 

workers. This may be because the job itself is not easy or because the industry 

is challenged by high turnover rates, low social value, lack of professional 

recognition, severe staffing shortages, lack of career ladders and opportunities 

for direct support workers and near poverty level wages.
Workforce Conditions Deter 

Recruitment and Retention

43.3% DSP 

Annual 

Turnover 

Rate

Low Wages 

Meager 

Benefits

Physically 

Challenging 

Work 

High Rate of 

Injury

High 

Accountability 

for Actions

Professional 

Isolation & 

Workplace 

Culture

Lack of 

Career 

Ladders &

Lattices

Insufficient

Training and 

Professional 

Development
How Do We Define Quality in HCBS?

“It is defined at the point of interaction

between the staff member and the 

individual with a developmental disability.”

John F. Kennedy, Jr. (1995)

Chair, President’s Committee for 

People with Intellectual Disabilities 

& Founder, NADSP
Direct Support: A Highly Skilled Profession
High Expectation Discrepancy

Specialized

Knowledge

Comply with

Rules and 

Regulations

Documentation

Support 

Mitigate Risk

Choice &

Culturally 

Competent

Understand &

Respect

Rights

Teach

Support Healthy

Relationships

Understanding

Ethical

Responsibilities

Promote

Health &

Wellness

Provide Complex

Medical

Supports

Problem

Solving Skills

and Judgement

PersonCentered

Supports
The Emerging Roles of the

Direct Support Workforce

Historically....

• Primarily Seen as Caretaker

• Focus on Custodial Care

• Providing Companionship

• Providing Coverage

• Primarily Focused on Health & 

Safety Issues

• Entry-Level & Dead-End Job

Now and in the Future....

• Ambassador, Mentor & Coach

• Culturally Competent

• Close Interactions with Medical 

Professionals

• Supporting Informed Decisions –

Assessing RISK

• Using Technology to Support Human 

Growth & Independence
The Changing Expectations of the 

Direct Support Workforce

Historically....

• Blindly Follow the Written Plan

• Filling shifts

• Rely on readily available supervision

• Community Outings

• System-Centered Identification

Now and in the Future....

• Creating meaningful plans with People 

they support

• Helping people build meaningful 

friendships & relationships

• A distinct focus on Inclusion – not 

"community outings"

• Advocating WITH – not FOR people 

with disabilities

• Presuming Competence and Focusing 

on Skills, rather than Needs
Creating a Profession
Which is Direct Support?

Occupation is an activity undertaken by the person to earn his/her livelihood. 

It can be business, profession or employment that a person undertakes to 

make money.

Profession is an activity that requires specialized training, knowledge, 

qualification and skills. It implies membership of a professional body, and 

certificate of practice. The individuals who undertake a profession of 

rendering personalized services are called professionals, who are guided by a 

certain code of conduct, set up by the respective body.

https://keydifferences.com/difference-between-occupation-and-profession.html
A Common Job Title

Residence Counselor

Program Instructor

Community Bridge Builder

Disability Aide

Mental Hygiene Therapy Aide

Disability Support Counselor

Community Connector

Individual Support Specialist

Direct Support Professional
A Common Definition

Direct support professionals (DSPs) assist people with intellectual and/or developmental 

disabilities in realizing their full potential and becoming valued and participating members of 

their communities. Their work is complex and goes well beyond caregiving, requiring skills 

including independent problem solving, decision making, behavioral assessment and 

prevention, medication administration, health and allied health treatment, teaching new 

skills, crisis prevention and intervention and more. The job duties of a DSP may resemble 

those of teachers, nurses, social workers, counselors, physical or occupational therapists, 

dieticians, chauffeurs, personal trainers, and others. Their work requires strong 

communication skills and the ability to build relationships with the people they support and 

their families. DSPs may work in family or individual homes, intermediate care facilities, 

residential group homes, community job sites, vocational and day programs, and other 

locations. Their work is determined by the unique needs and preferences of the individuals 

they support and they are held to high ethical and professional standards.

National Alliance for Direct Support Professionals, Inc. (2021)
Guest Panel

19

–BJ Stasio, New York

–Nguungwan (Victoria) Afa, Tennessee
PCPID MEMBER DISCUSSION 
BREAK

10 minutes
HCBS / Employment
HCBS / Employment Workgroup Members

Workgroup Members

Co-Chairs:

– Eva Bunnell, Citizen Member

– Gabriel Martinez, Citizen Member

Members:

– Alyse Bass, Ex Officio Member

– Cathy Kanefsky, Citizen Member

– Max Lapertosa, Ex Officio Member

– Brent Leonhard, Citizen Member

– Lucy Meyer, Citizen Member

– Katy Neas, Ex Officio Member

– Nick Perry, Citizen Member

23
Issues Identified on Meaningful Employment

Lack of coherent 

method to explore the 

Lack resources/supports for 

employment of 

individuals with IDD.

A low level of funding 

to increase the 

number of job Need

shadowing and 

mentorships.

Lack of supports and 

resources to sovereign 

Increase nations for their tribal 

citizens with IDD who 

are seeking 

employment and/or 

employment training.

• As of May 2022, individuals with disabilities represented 9.4% 

of the federal workforce. We believe it would be a good 

practice to increase that number.

• Expiration of the Work Opportunity Tax Credit (WOTC) in 2025.

• Expenses incurred by employers for disability hiring despite 

mandated agencies, such as VR and Workforce Development, 

and the challenges associated with said agencies; and

• Low pay rate for Vocational Rehabilitation (VR) supported 

employment services.

• Many individuals with I/DD and other types of disabilities seek 

or secure employment through the businesses and companies 

owned by others. There are, however, few opportunities that 

can support individuals in becoming entrepreneurs and being 

self-employed successfully;
What percentage of people with IDD are employed?

• ...less than one out of every two working age adults with IDD is in the labor force 

(i.e. currently employed or searching for work). Only 44% of adults with ID aged 21-64 

are in the labor force.

• 28% of working age adults with ID have never held a job.

-National Snapshot of Adults w IDD in the Labor Force, Special Olympics 

Are people with disabilities more likely to be self 

employed?

Overall, people with disabilities {all} are still less likely to be 

employed than their counterparts who don't have disabilities, and 

they are twice as likely to be employed part-time, the BLS report 

said. ”However,” they’re also more likely to be self-employed.

-Fortune.com, Feb 24, 2023
What do we know about self-employment of individuals with disabilities?

A larger share of workers with a disability were self-employed in 2022 than were those with no disability 

(9.5 percent versus 6.1 percent). In contrast, a smaller share of workers with a disability were private 

wage and salary workers (76.7 percent) than were those without a disability (80.5 percent). 

-Bureau of Labor Statistics, 2022
LINKS TO MORE INFORMATION

Rhode Island – Rhode Island DD Center Business Series (You Tube Video)

https://www.youtube.com/watch?v=RvYh71pz9_Q

Tennessee - Direct Support Professionals Supporting Employment

https://publications.ici.umn.edu/frontline-initiative/18-2/when-allan-feels-valued-itmakes-a-world-of-difference

National Snapshot of Adults with Intellectual Disabilities in the Labor Force: 

• StateData.Info – See the latest trends in state performance in work and participation 

for people with intellectual and developmental disabilities. 

• National Snapshot of Adults with Intellectual Disabilities in the Labor Force –

Research study commissioned by Special Olympics through Center for Social 

Development and Education at the University of Massachusetts Boston and 

administered by Gallup. 
Guest Panel

28

–Alton Stuckey, Rhode Island

–Joshua Drywater, Arizona
Alton Stuckey, RI Business Owner, 

“Alton Stuckey Portraits & Beyond” 
How I Started My Business

• I was 14 years old and started to draw.

• In the 90’s I was at a day program and 

started to draw there too.

• They were an agency that worked with 

people who wanted to learn art.

• Some staff were graduates of University 

Art Programs.

• They helped me to learn new things.
My First Steps To Own My Business

• I took abstract art Classes at RI 

School of Design. 

• Then I started doing portraits.

• My agency thought I was creative 

and had talent. 

• They would bring up images on the 

computer that I would draw.

• They helped me to promote my 

work.
About My Business

• I started my Business in 2019

• I create portraits of people, pets, or 

wedding couples from individual photos. 

• I use watercolors, pencils, paint, charcoal.

• I also create paintings and abstracts of 

landscapes and seascapes.

• I create an annual calendar of my favorite 

works of art.
Why I Love Being a Business Owner

• Getting orders from people

• Making some money

• Meeting people and sharing my talents

• It makes me happy 

• I’m proud of myself!
Where I Sell My Art

I sell my art products: 

• Online through Instagram, 

• Pop-up Art Shows, 

• “Small Business Saturday SHOP RI”, 

• My Church, and 

• By word of mouth. 
Other Support

• My family helped me with funding for supplies, 

materials, etc. that I needed.

• I took Business Classes on Self-Employment 

through the RI Developmental Disabilities Council 

(RIDDC).

• RIDDC gave me a grant for more supplies and 

materials for my business.

• I also use funding from self-directed supports from 

State DD for staff to help me with my business 

production, going to events, and tracking sales
MY Recommendations

1. Tell People they CAN DO IT and DON’T GIVE UP!

2. More self-employment programs top help people learn about 

HOW to start a business.

3. Funding from DD Medicaid Waiver to help people to buy necessary 

materials, supplies, small equipment for their business.

4. Funding from Vocational Rehabilitation to support business owners 

with disabilities. 

5. Places in the community where people can go to use for 

production space to create their works of art or products.

6. Approval from Social Security to keep your SSI Check and earnings 

for 1-3 years to get your business really going.
THANK YOU!

You can contact me through

my Mom, Iraida Williams 

Email: 

Iraida28@hotmail.com

Phone: 

401-465-2838

Instagram: @Altonstuckeyart
Expanding possibilities and enhancing independence through education, research and service

Employment Landscape for 

Native Populations
Expanding possibilities and enhancing independence through education, research and service

PRESENTATION AGENDA

●Introduction

●Current State of Employment

●Issues

●Gaps

●Best Practices

●Questions
Expanding possibilities and enhancing independence through education, research and service

Introduction
Expanding possibilities and enhancing independence through education, research and service

Current State of 

Employment
Expanding possibilities and enhancing independence through education, research and service

Issues/Barriers

●Transportation

●Technology

●Service Access Shortages

●Social Services
Expanding possibilities and enhancing independence through education, research and service

Gaps

●Advocacy

●Outreach and Training

●Communication

●Opportunities
Expanding possibilities and enhancing independence through education, research and service

Best Practices

●Culture-informed

●Community-based

●Family orientated

●Resiliency
Expanding possibilities and enhancing independence through education, research and service

Considerations 

Moving Forward

• Building upon the Native Community Framework

• Tightening Communication at all levels

• Development of Integrated Resource Teams
Expanding possibilities and enhancing independence through education, research and service

R. Joshua Drywater

Program Manager, Native Initiatives

Sonoran Center For Excellence in Disabilities

The University of Arizona

rjdrywater@arizona.edu
PCPID MEMBER DISCUSSION 
BREAK

10 minutes
HCBS / Community Living
HCBS / Community Living 

Workgroup Members

Co-Chairs:

– Santa Perez, Citizen Member

– James Trout, Citizen Member

Members:

– Kelly Buckland, Ex Officio Member

– Max Lapertosa, Ex Officio Member

– James Meadours, Citizen Member

– Brian Parsons, Ex Officio Member

– Wendy Strauss, Citizen Member

– Jodie Sumeracki, Ex Officio Member

– Debra Tidwell-Peters, Ex Officio Member

– Jeanine Worden, Ex Officio Member

– Jordyn Zimmerman, Citizen Member

50
HCBS / Community Living 

Issues Surfaced by Workgroup

Assistive Technology

• Individuals with ID/DD need to learn Assistive Technology at an early age.

Disaster Preparedness

• Ensuring people with ID/DD have more knowledge about disaster preparedness; and

• Lack of understanding, knowledge, coordination surrounding durable 

accommodations.

Education

• Lack of services and support K-12 and during transition period.

51
HCBS / Community Living 

Issues Surfaced by Workgroup

Housing

• Being independent on federal subsidy;

• Lack of affordable and accessible housing near transportation hubs;

• Towns created exclusively for people with ID/DD do not promote community inclusion;

• Not enough public affordable housing in desired areas;

• Lack of awareness and planning around housing opportunities for with disabilities / need

to start transition planning early;

• Zoning restrictions limit the availability of housing options that could provide additional 

types of community living; and

• Individuals with disabilities face discrimination from landlords.

52
HCBS / Community Living 

Issues Surfaced by Workgroup

Personal Safety

• Protection from physical and emotional abuse or exploitation in their home/place of 

residence and in any community setting; and

• Adults with Intellectual Disabilities are at high risk of getting sick when attending adult 

day care centers (e.g. pandemic).

Transportation

• Accessibility in urban and rural communities.

53
Guest Panel

54

–Amanda Baker, Florida

–Bryan Russell, Florida

–Vance Taylor, California

–Kira Meskin Schiff, Illinois
The Hurricane Michael Effect
Disaster and Emergency 

Planning Resources

Disability Topics Page

https://disabilityrightsflorida.org/disability-topics/category/disaster_and_emergency_planning

Emergency Preparedness Resources

• Are You Prepared for an Emergency 

Brochure

• Special Needs Shelter Podcast

• Evacuate/Shelter-in-Place 

• Shelters and Accessibility

• Pets and Service Animals

• Medication Access

• Links to Other Resources throughout the 

state.

Hurricane Resources & Information

Updated with information regarding most current disaster (Currently Hurricane Ian) 
Please contact Disability Rights Florida at:

2473 Care Drive, Suite 200

Tallahassee, Florida 32308

800.342.0823 • TDD 800.346.4127

www.DisabilityRightsFlorida.org

57
Gaps and Barriers in 

Emergency Preparedness

Kira Meskin Schiff 

• Vice Chairperson, Illinois Emergency Management Agency’s Access and 

Functional Needs. Advisory Committee

• Community Reintegration Advocate, Progress Center for Independent Living

• Occupational Therapist

• Home Modification Specialist

• Certified ADA Coordinator

• Primary Co-leader of PPE for People With Disabilities Coalition
People with Disabilities Are Often Forgotten

• Emergency management agencies at the federal, state, 

and local level have legal and ethical obligations to meet 

the needs of people with disabilities

• People with disabilities are not effectively considered in 

emergency management services

• The COVID-19 pandemic brought to light a lot of problems 

in Illinois

• People who use and provide Home and Community Based 

Services were left out of emergency management services

• Emergency management agencies also need to prepare 

and plan ahead of time
Concerns With Illinois’ Emergency Management

• Home and Community-Based Services are not a priority 

for Illinois 

• There is little coordinated and systematic efforts between 

state agencies

• Direct Support Professionals and Personal Assistants are 

essential workers, but they are not viewed as important

• Centers for Independent Living and Illinois Council on 

Developmental Disabilities could be more effective with 

more education, guidelines, and support to provide 

emergency preparedness services

• Emergency Managers need to actually follow disability 

laws and policies
Poor Communication With the Public

• We need communication that actually reaches 

us and is understood by us

• If we are not informed, we do not know what 

our rights are, our options for services, how to 

advocate and make complaints

• Access to technology, the internet, and 

information are huge barriers
Making Communication Truly Accessible And Effective

• Follow the Americans with Disabilities Act requirements on 

effective communication

• Use multiple types of communication at once

• This means sending mail and making phone calls and sending 

texts messages and emails and going to people’s homes

• Use plain language Universal Design and easy read materials

• Consider formal and informal caregivers

• Share information more than one time
Including People With Disabilities

• Talks about equity often do not include disability

• ”Nothing About Us, Without Us” means being in the room where it 

happens

• We need Access and Functional Needs Office, Staff, and Advisory 

Committees in every state 

• We need to be included as leaders and subject matter experts

• Create contracts with Centers for Independent Living, State Council 

on Developmental Disabilities, The Arc, and other disability-led 

organizations

• Include us in data collection
Thank You To The People Who Helped Me

• Tia Nelis, President’s Committee for People with Intellectual Disabilities

Kimberly Mercer-Schleider, Illinois Council on Developmental Disabilities

• Krescene Beck, Illinois Self-Advocacy Alliance and Blue Tower Solutions

•

• Leanne Mull, Blue Tower Solutions

• Meg Traci, Rural Institute for Inclusive Communities, University of 

Montana

• Sadie Martinez, Colorado Division of Homeland Security and Emergency 

Management

• The Partnership for Inclusive Disaster Strategies
PCPID MEMBER DISCUSSION 
BREAK

10 minutes
HCBS / Federal Support Programs
Home and Community-Based Services

Understanding the need to reform 

key federal support programs.

The Financial Imperatives

The Moral Imperatives
HCBS / Federal Support Programs

Workgroup Members

Co-Chairs:

– Shawn Aleong, Citizen Member

– Paul Aronsohn, Citizen Member

Members:

– Alyse Bass, Ex Officio Member

– Paul Boskind, Citizen Member

– Leola Brooks, Ex Officio Member

– Lisa Gray, Ex Officio Member

– Jodie Sumeracki, Ex Officio Member

69
Home and Community-Based Services

“Home- and Community-Based Services (HCBS) are types of person-centered care delivered in the home and community.... 

HCBS are often designed to enable people to stay in their homes, rather than moving to a facility for care.

HCBS programs are often funded by state waivers. Waivers are part of a state's Medicaid program, but they provide a 

special group of services to a certain population. Waivers usually require medical and financial eligibility....”

-- from CMS.Gov

HCBS is a Medicaid program that helps make it possible for 

people with disabilities to live in the community.
Medicaid eligibility is therefore absolutely necessary.

Medicaid

2023

Single Couple

Income $914 / month

(many states)

$1,371 / month

(many states)

Assets $2,000

(many states)

$3,000

(many states)

However, current Medicaid income and asset limits are too low, and 

married couples are penalized.
Supplemental Security Income eligibility 

is therefore often very important.

Supplemental Security Income

(2023)

Single Couple

Income $941 / month

(national limit)

$1,391 / month

(national limit)

Asset $2,000

(national limit)

$3,000

(national limit)

However, current SSI income and asset limits are too low, and 

married couples are penalized.
Other Federal Programs are often very important, too.

However, other federal programs also pose challenges 

for people with disabilities wanting to live in the community.
Guest Panel

74

–Patrice Jetter, New Jersey
PCPID MEMBER DISCUSSION 
Closing Remarks / Next Steps

Jim Brett

PCPID Chair

76
THANK YOU

77