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Share Your Story!

We want to hear about the people, services and supports that make a difference in your life. Tell us about a Care Manager, CDNY team member, service provider or other supports or activities that help you live the life you choose, and why Home and Community-Based Services (HCBS Waiver services) and Medicaid are important to you.

Your story can help show why these services matter, how changes to access to Home and Community Bases Services and Medicaid could affect you and why the rights protected by the DOJ’s Olmstead decision are important.

Your story may be featured in CDNY email newsletters, on our website or social media and shared with local and/or national advocacy groups such as ANCOR and the ARC of the US and others advocating for the rights of people with I/DD.
Please note: Your name an email address are required for security purposes only and will not be used in your submission or to contact you.
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Care Design NY Media Release and Authorization

By signing this form, I understand that I am providing consent and authorization for Care Design NY to take and use photo imagery, audio, video image, and/or testimonial (with or without the use of the person’s first name) in perpetuity. This will allow Care Design NY to take and use photo imagery, audio, video image, and/or testimonial for internal or external communications for the purposes of education, advertising, marketing, publicity, and/or fundraising. Use could include distributing materials on the website, in email newsletter, social media, TV, radio, news releases for the media, and/or print publications such as newspapers, magazines, and Care Design NY publications (brochures that are provided to the general public). I also give permission, if interviewed, by Care Design NY or its affiliates to use the story, and any of the direct quotes in any medium, including descriptive details that individual chooses to share about their life with Care Design NY.

By signing this form, I understand and agree to the following:

1. Giving consent will publicize that services are provided to the individual by Care Design NY.

2. Care Design NY will retain all rights to the photographs, moving images, sound recordings, and other media, and that there will be no compensation by Care Design NY.

3. I waive any right to inspect or approve media that contains my name, image, sound recordings, story, and/or information.

4. I will not assert any claim of any nature against Care Design NY, its employees and agents, and/or affiliate programs relating to the exercise of the permissions granted by this Release and Authorization.

5. I understand and acknowledge that the Internet allows for wide sharing and forwarding of information and that CDNY cannot control all reproduction and/or re-disclosure of information.

6. The photo imagery, audio, video image, and/or testimonial obtained during the period of this authorization may be utilized indefinitely. This authorization will remain in effect until the person supported by Care Design NY (identified above) is discharged at which time no new photos, audio, video or testimonials obtained from that date forward may be used.

7. I may revoke this Release and Authorization at any time, in writing, but a revocation, or discharge, will not impact any use or disclosure made prior to the date the revocation is received or discharge has taken effect.

8. I understand that I have read this document (or it has been translated to me), I fully understand it, and my consent is made knowingly and voluntarily. I am signing this Release and Authorization voluntarily and understand that provision of services to me by Care Design NY and/or its affiliate programs is not conditioned on whether or not I sign it.
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Your story is the best tool we have to speak up for change.

Home and Community Based Services (HCBS), also known as “waiver” services, help hundreds of thousands of New Yorkers with disabilities who live in their own communities. Right now, these important programs are at risk.

Here’s what’s happening and why sharing your story matters today.

Community living rules are under threat.

In 1999, the Supreme Court made a decision in a lawsuit called Olmstead v. L.C. They said people with disabilities have the right to live and receive services in the community instead of institutions. This court decision reinforced the Americans with Disabilities Act (ADA), which makes segregation against the law.

Recently, the federal government’s Department of Justice changed how it interprets the court’s decision. They said they will not use it anymore to help enforce the right to community integration the same way they have for over 20 years.

The ADA is still the law, and it is still illegal to make people with disabilities live in institutions if they choose not to and can live in the community. What has changed is that the court's decision no longer provides guidance to states in applying the ADA. Segregation is still illegal, but with federal support removed, local communities and families must stand up and defend the right to choose where they live.

Your voice could help protect these services.

Medicaid cuts hurt local families.

A new law signed in 2025, H.R. 1 (often called "The Big Beautiful Bill"), cuts almost $1 trillion from Medicaid over ten years. All OPWDD programs, including Care Management services from CCOs, are funded by Medicaid. When Medicaid cuts are made, they can affect continued funding for the services and supports people's needs.

During past state budget cuts, other states have had to reduce disability services. There is a lot of work going on to help prevent this from happening in New York.

What organizations are doing to help.

Groups across the country are working hard to protect home and community-based services and the I/DD community’s rights to choose where they live.

Personal stories move people and change policy more than anything else.

Such stories could include:

  • A care manager explains how budget cuts hurt daily care.
  • A parent shares how vital these services are for their family.
  • A person with a disability shares what independent or community-based living means to them.
  • A former resident of Willowbrook State School shares how the right to live and receive services in the community has impacted their life.
  • A caregiver explains how Medicaid cuts affect the accessibility of care.

This is why we need you to share your story.

Every story about how home and community-based services and the right to live in the community helps show how important they are. Telling people how losing these protections would harm people with I/DD gives advocates proof of the real impact to people that they need to help protect these services.