The Voices of People with Disabilities and Older Adults

Strengthening Advocacy in the HCBS Settings Rule

Kate Brady, PhD ABD

Project Manager for HCBS Stakeholder Engagement

National Center on Advancing Person-Centered Practices and Systems

Human Services Research Institute

September 23rd, 2022
Welcome

This is first in the Administration for Community Living’s (ACL) Webinar 

Series on the role of stakeholders in ensuring high quality in Home and 

Community Based Services (HCBS) services. 

In this session we invite you to hear the vision the administration has 

for advancing engagement with stakeholders and thereby the 

experiences of people receiving supports. 

We will look at the rationale for engagement, the pathways available for 

input, and some model approaches for giving and receiving stakeholder 

feedback.

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Agenda

• Welcome and participant poll

• Alison Barkoff 

– Principal Deputy Administrator currently serving as ACL’s Acting 

Administrator and as the Acting Assistant Secretary for Aging.

• Jill Jacobs 

– Commissioner of ACL’s Administration on Disabilities.

• HCBS Settings Rule Stakeholder Engagement Overview

• Nancy Thaler

– Senior Policy Advisor to ACL

• Model approaches to stakeholder engagement

• Questions and Answers

• Closing Poll

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Webinar Logistics

• Participants will be muted during this webinar. You can use the chat

feature in Zoom to post questions and communicate with the hosts. 

• Toward the end of the webinar, our speakers will have an opportunity 

to respond to questions that have been entered into chat.

• The webinar will be live captioned in English.

– Live English captions can be accessed by clicking the “CC” 

button at the bottom of your Zoom screen. 

• This live webinar includes polls and evaluation questions. Please be 

prepared to interact during polling times. 

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VISION FOR STAKEHOLDER 

ENGAGEMENT WITH HCBS

Alison Barkoff 

Principal Deputy Administrator currently serving as ACL’s Acting 

Administrator and as the Acting Assistant Secretary for Aging.

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AOD VISION FOR STAKEHOLDER 

ENGAGEMENT WITH HCBS

Jill Jacobs - Commissioner of ACL’s Administration on Disabilities.

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The What and Who 

of HCBS

What are Home and Community- Based Services (HCBS)?

HCBS provide funded support for:

• Employment

• Transportation

• Homecare/home health

– Medications

– Housekeeping

– In-home therapy (PT, OT, Speech, etc.)

• Activities of daily living

– Bathing, dressing, toileting

– Cooking

• Finances

• Assistive Technology and Home 

Modifications

Who receives HCBS?

• In 2018 more than 4.7 million people 

received Medicaid-funded HCBS

• Each state has its own system and 

decides to which populations they will 

offer HCBS waivers 

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Core requirements of the 

CMS HCBS Final Settings 

Rule (2014) • Requires every state to ensure that services meet minimum standards for integration, access to community life, choice, autonomy, and other important consumer protections

• Person-centered planning

• States must receive final Statewide Transition Plan approval.

• All states and settings will be fully compliant with the following regulatory settings 

criteria:

– Privacy, dignity, respect, and freedom from coercion and restraint; and

– Control of personal resources.

• All states and provider-owned and controlled residential settings will be fully compliant 

with the following regulatory settings criteria:

– A lease or other legally enforceable agreement providing similar protections;

– Privacy in their unit, including lockable doors, and freedom to furnish or decorate 

the unit;

– Access to food at any time;

– Access to visitors at any time;

– Physical accessibility; and

– Person-centered service plan documentation of modifications to relevant 

regulatory criteria.

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Corrective Action Plans 

(State Flexibilities)

• CMS will authorize CAPs to continue federal reimbursement of HCBS 

beyond the end of the transition period, if states need additional time to 

ensure full provider compliance with the regulatory criteria NOT mentioned 

above. These include for example:

– Access to the broader community;

– Opportunities for employment;

– Option for a private unit and/or choice of a roommate; and

– Choice of non-disability specific settings.

• States must be able to show that their policies and procedures reflect the 

settings criteria and they have made efforts to implement the criteria to the 

fullest extent possible and work with CMS on a concrete, time-limited plan to 

come into full compliance with remaining criteria.

• States should seek stakeholder input when developing CAPs.
Opportunities for 

Engagement

Now

• Statewide Transition Plans

– View STPs:

https://www.medicaid.gov/medic

aid/home-community-basedservices/statewide-transitionplans/index.html

• Heightened Scrutiny Packages:

• CMS Site Visits

• ACL Stakeholder calls

In the future

• Corrective Action Plans

- States must be able to show that 

their policies and procedures reflect 

the settings criteria and they have 

made efforts to implement the criteria 

to the fullest extent possible and work 

with CMS on a concrete, time-limited 

plan to come into full compliance with 

remaining criteria.

• Waiver Amendments and 

Renewals

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Who are the stakeholders 

we need to hear from?

INDIVIDUAL PEOPLE WITH 

DISABILITIES THEIR 

FAMILIES, AND 

NEIGHBORS

ADVOCACY GROUPS:

Parent Groups

Sibling groups

Self-advocate groups.

PROTECTION FROM HARM 

RESOURCES:

State Protection & Advocacy

Ombudsman

Adult Protective Services

STATE INDEPENDENT 

LIVING COUNCILS 

& 

CENTERS FOR 

INDEPENDENT LIVING

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Methods for 

Engagement

Show up and give in person public comment

Submit written comments from your organization

Coordinate templates for others to use in submitting comments.

Consult partners about submitting joint comments

Call your legislators and other elected officials

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Tell us what you have been doing 

to engage with the HCBS Settings 

Rule

• Please put in the chat or in this Google 

Jamboard:

– https://jamboard.google.com/d/1BK0ODAIC_l

x_vFr3dhhpHKuNcwKFl33aQarWIqD3uhw/ed

it?usp=sharing

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STATE APPROACHES TO 

STAKEHOLDER ENGAGEMENT

Nancy Thaler

Senior Policy Advisor for the Administration for Community Living

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HOW THE GREEN MOUNTAIN STATE IS 

INFLUENCING IMPLEMENTATION OF THE 

HCBS SETTINGS RULE

Kirsten Murphy –

Executive Director of the Vermont Developmental Disabilities 

Council

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Why is Stakeholder 

Input Important?

Foundational Value

• Nothing about us, without us.

Practical Reality

• Self-advocates and families can see 

what state agencies can not.
How does Vermont DDC work with partners?

• Conduit for information.

• Convenor of stakeholder meetings & town 

halls.

• Composer of public comment for sign-on.
Your State has promised that the DD 

Council will be involved in quality 

assurance.

Section 124(c)M

STATE QUALITY ASSURANCE – The 

Council will participate in the planning, 

design or redesign, and monitoring of 

State quality assurance systems that 

affect individuals with developmental 

disabilities.
Act as a Trusted Messenger 

for the Home and Community Based 

Services (HCBS) Settings Rule

• Become subject matter experts! 

– Read everything -- Your State’s waiver, CMS guidance, state 

quality strategy; not just the State Transition Plan.

• Use every opportunity for comment, written or oral.

– Formal public comment vs. other comment.

– Share comments widely.
Act as a Trusted 

Messenger 

Regarding HCBS

• Build partnerships with other disability groups or HCBS 

programs – for example, Independent Living

• Explain the settings rule in plain language. Ensure 

that self-advocates and family members know about 

their new rights in provider-owned settings.

• Gather Stakeholders and invite State Decision-Makers 

– for example, host a “Town Meeting.”

– Put information in Plain Language

– Look for stories about services in advance

– Coach speakers in advance

– Follow-up with a written summary of key points
What has the VTDDC 

done?

Conflict of interest free case 

management

• State claimed the rule did not apply.

• State asked for “the choice model.”

• State was put under a plan of 

correction.

• Timeline for the plan was reduced 

by CMS.

We built a relationship with CMS.

Renewed focus on 

the Settings Rule

• State filed a plan saying there were 

no settings that merited heightened 

scrutiny.

• CMS selected VT for review & a 

visit this summer.

• CMS asked the Council to host a 

stakeholder session.

Our relationship with CMS paid off!
Tips for 

Stakeholder 

Engagement

• Set your terms and 

insist upon them –

recording, time, 

location, etc.

• Ensure a safe 

space – consider 

confidentiality & 

conflicts of interest.
Tips for 

Stakeholder 

Engagement

• Insist meeting materials 

are accessible.

– Send 

materials in 

advance

– Need to 

know vs 

nice to know

– Use plain 

language • Ask open-ended 

questions.
PA Stakeholder 

Engagement

Lisa Tesler

Sally Gould-Taylor

September 

23, 2022
Information Sharing and Advisory 

Committee

• Led by the Office of Developmental Programs

• Every Day Lives

• Focus on quality

• Broad Stakeholder Group

– DD Act Network

– Self Advocates

– Families

– Providers
PADDC and Temple Partnership

• Council HCBS Final Rule Grant (2017-2021)

– Advocacy, education and monitoring

– Authentic and meaningful implementation of the Final 

Rule and its underlying philosophies

• Institute on Disabilities at Temple

– The Institute was awarded this grant and partnered with 

several statewide organizations including Disability 

Rights PA, PA Health Law Project and Self-Advocates 

United as One (SAU1) to carry out the work of the grant.

– https://disabilities.temple.edu/programs- services/policy/home-and-community-based- services/hcbs-living-my-life-my-way-mark
Coalition for Inclusive Community

• Came together to support State Center 

Closures

• All three DD Network Partners

• Advocacy leaders

– Self Advocate Organizations

– Statewide Family Advocacy Groups

– Centers for Independent Living

– Arc of PA
Additional Support

• Providing Model Comments

• Convening small groups of families and 

self advocates

• Explaining HCBS Final Rule 

• Providing Plain Language resources

• Social Media Engagement
How To Contact Us

Lisa Tesler

PA Developmental Disabilities Council

ltesler@pa.gov

Sally Gould-Taylor, PhD

Institute on Disabilities, PA UCEDD

College of Education and Human Development

Temple University

sgould-taylor@temple.edu
ALABAMA’S HCBS STAKEHOLDER 

ENGAGEMENT

Elouise Woods

Vicki Hicks Turnage

James Tucker – Director, Alabama Disabilities Advocacy Program (ADAP)

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Alabama

• Decided to monitor HCBS settings vigorously 

• Incorporated monitoring results into two public 

comments in Fall 2022 and Spring 2022

• Conducted multiple listening sessions with 

stakeholders to support public comments

– In state

– With Federal Partners

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GEORGIA’S HCBS STAKEHOLDER 

ENGAGEMENT

Alyssa Lee, PsyD - Public Policy Research and Development 

Director

Georgia Council on Developmental Disabilities

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Resources and Toolkits

• Designed for state programs to strengthen their 

infrastructure and develop stronger HCBS for 

beneficiaries

• Toolkit contains four modules

– State strategies to help increase the share of long-term 

services and supports (LTSS) provided in community-based 

settings (history/context of LTSS reform and rebalancing)

– Tools designed to assist states with policy and programmatic 

strategies (describes key elements of HCBS systems that are 

economically sustainable and equitable for all individuals with 

LTSS needs)

– Cases studies of innovative programs and creative ways 

states are leveraging available federal authorities to transform 

LTSS systems (describes the various Medicaid authorities that 

states can choose from to cover their HCBS programs)

– Links to resources (provides examples of state models of care 

and strategies to reform LTSS systems and expand HCBS)

• Go to https://www.medicaid.gov/medicaid/homecommunity-based-services/guidance/homecommunity-based-services-final-regulation/index.html

• Published a toolkit for advocates, families, and 

administrators on how to ensure that people with 

disabilities receive Medicaid-funded HCBS in integrated 

settings that offer full access to the community

• Includes four different resources

– A resource for advocates and their families that explains what the 

new HCBS rule means and how to make their voices heard as their 

states make their transition plans. It also includes scripts for writing 

to their state's Medicaid agencies on how they think their state's 

HCBS program needs to change

– A resource for state administrators and professionals on how to 

come into compliance with the new rule. It includes detailed 

guidance on the implications of the new rule, suggestions for 

elements to be included in the transition plan, and examples of 

useful tools and questionnaires for accessing provider compliance.

– A research brief explaining how scattered-site supported housing 

can help states meet the integration and choice standards in the new 

rule.

– A fact sheet on integrated housing for people with disabilities.

• Go to https://autisticadvocacy.org/policy/toolkits/hcbsrule/
Additional 

Resources

VIDEOS

• HCBS Video: Overview (7:26 minutes) at https://www.youtube.com/watch?v=xnbtb5Jpz7c

• HCBS Video: What does the Rule Guarantee? (5:17) at https://www.youtube.com/watch?v=8sJl-LF5ufg

• HCBS Video: Provider Requirements for Residential Settings (6:32) 

at https://www.youtube.com/watch?v=sjy334aMXXk&feature=youtu.be

• HCBS Video: Rights Restrictions & Modifications (3:44) https://www.youtube.com/watch?v=Vg5DA_ouOwY

• HCBS Video: Your Services Should Be All About You – for people receiving HCBS that discusses rights and 

choice. https://www.youtube.com/watch?v=-xqttlDcAkM 

INTERACTIVE GUIDES

• HCBS Guide: Your Right To A Community Life (for people receiving HCBS) https://www.c-ql.org/resources/guides/hcbs-guide-your-right-to-a-community-life/ 

• HCBS Guide: Supporting The Right To A Community Life (for staff who support people receiving HCBS – focuses on 

community) https://www.c-q-l.org/resources/guides/hcbs-guide-supporting-the-right-to-a-community-life/

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Please put any questions in the 

chat and give us your honest 

feedback in the on-screen poll.

Thank you.

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