Submit your public comment to NCD

Your participation during the public comment period provides an opportunity for us to hear from you—individuals, businesses, providers, educators, parents and advocates. Your comments are important in bringing attention to issues and priorities of the disability community and informing the work of NCD.

Next Public Comment Opportunity:

Thursday, May 29, 2025, from 4 to 4:45 p.m. EDT during NCD’s Council Meeting.

Topic(s): Youth and younger adults in nursing homes; 2025 Progress Report notable policy developments

For the May 29 Council meeting, NCD will have a public comment period of 45 minutes and requests comments from the public regarding the experiences of youth and younger adults in nursing homes and for our 2025 Progress Report focused on what the public considers the most notable disability policy developments since Summer 2024. The Council would also like to hear about any missed opportunities within those achievements.

Information on our Council meeting is available on our Upcoming Event page.

Public comment will be used to further develop the information in NCD’s reports, HCBS Ecosystem (2022), Deinstitutionalization: Unfinished Business (2012); NCD communications with Congress and the Department of Health and Human Services regarding institutionalization and HCBS; and the 2021 Progress Report: The Broadscale Impacts of Covid-19 on People with Disabilities. It will fill a gap in the existing knowledge about younger people with disabilities in nursing homes by describing policies and events that contribute to nursing home placement, presenting state and federal data on the amount of younger people residing in nursing homes and describing the impacts on their lives. Finally, it will provide recommendations to federal and state agencies on improving existing policies and causes that result in the institutionalization of younger people with disabilities, particularly the Department of Health and Human Services (HHS), the Department of Housing and Urban Development (HUD), and state Medicaid agencies.

Research Questions

• What number of people with disabilities ages 21-40 are receiving LTSS in nursing homes? How large is the subset of those under age 21? What are the numbers by state? What are the demographics? What is the average length of stay?
• What data gaps exist on these questions and how could the Centers for Medicare and Medicaid Services (CMS) improve them? What reporting could HHS or HUD require of federal fund recipients to obtain data on people with disabilities age 40 and under in nursing homes?
• How many people are estimated to be on waiting lists to transfer out of nursing facilities are ages 21-40 and under 21? How have these numbers changed over the past 10 years? What are the best sources for this data?
• Are there existing federal and state policies that have the effect of routing younger people with disabilities into nursing homes? Are they the same as those that keep them there?
• What impact has Money Follows the Person had on nursing home diversion for younger people with disabilities? Please provide specific examples to the degree possible. What other programs are successful at diversion of younger people with disabilities from nursing homes?
• What opportunities are available to younger people with disabilities who reside in nursing homes, for free appropriate public education (FAPE), recreation, community participation?
• What are examples of non-governmental initiatives to help move children out of nursing homes? What states house the most children in nursing homes? What are the main causes? What is the remedy?
• How could policymakers address the needs of younger people with disabilities in LTSS and housing policy so that nursing home placement is minimized?

Format

The Council will receive public comment in person or by email.

For those interested in commenting, please read the Guidelines for Submitting and Presenting Public Comment During an Event details below in full. Advanced registration is required.

General Background

NCD welcomes the input of the public throughout the year to help inform the Council Members of concerns of the disability community so that their research and recommendations to policymakers reflects the priorities of the community. At any time, individuals and organizations may submit public comment on any topic of concern to PublicComment@ncd.gov.

Four times a year, NCD hosts quarterly Council meetings, during which NCD designates a period of time to receive public comment, either in-person, or via audio or visual through Zoom virtual meeting platform. For these meetings, NCD often selects a topic on which to receive targeted public comment, usually in line with a project that the agency has underway.

Instructions for Submitting a Public Comment

Advanced registration is required to make public comment at a quarterly meeting. To provide public comment during an NCD Council Meeting, please send an email to PublicComment@ncd.gov with the subject line “Registration for Public Comment” and your name, organization (if affiliated with an organization), state, and topic of comment included in the body of your email. Deadline for registration is the night before the meeting, by 8:00 p.m. EDT.

Helpful Information

NCD will call upon as many individuals who registered as possible as time permits. However, all public comment submissions sent via email will be collected and reviewed.

If you cannot attend the meeting, were not called upon, or prefer to submit a written comment, please submit your comment to PublicComment@ncd.gov with the topic in the header. Written comments are accepted both prior to and after NCD meetings

All individuals called upon to make comments will be allotted three minutes to speak.

Council Members will not respond to questions or engage in discussion with commenters.

Comments must be specific to the selected topic for the meeting. While public comment may be submitted on any topic over email, comments received during NCD meetings should be specific to the topic selected for the meeting. Those who make comments on topics other than the selected topic may be asked to stop speaking.

If there is time remaining, individuals who did not register can indicate interest in being selected to speak and may be called upon at the discretion of the agency.

What to Expect

When the Public Comment session begins, please be available and prepared to present your comments when called upon.

Those preregistered will be placed in a queue and will be called upon to present their comments.

When a person called to present, they will be asked to begin.

A warning will be given before the end of the three minute time limit, and the presenter will be stopped at three minutes.