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Calls to Action

New York Housing and Community Living

New York operates Medicaid home and community-based (HCBS) waivers to serve people with developmental disabilities, including autism. These HCBS programs along with affordable housing services help New York residents with autism live fulfilling lives in the community.
February 24, 2015

Read below for recent news and updates about New York's housing and community living programs...

The state is developing plans to make changes that will go into effect in 2019. Now is the opportunity to learn about these changes and get involved in these decisions that will affect individuals receiving Medicaid Home and Community-Based Services (HCBS).

New York has proposed changing its Medicaid waiver program for Home- and Community-Based Services (HCBS) in order to comply with a federal directive that prohibits services that "isolate" participants from the general community, and is inviting public reaction. The new rules will affect group homes, adult residential facilities, congregate living health facilities, and other settings.

This is a positive announcement from the Office of Persons with Developmental Disabilities as it forces states to make sure services are developed in a person-directed manner.

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through April 1. Further information is available at the OPWDD website HERE.

Informational Webinar

A third informational webinar on the Revised Transition Plan will be held on Tuesday, March 10 from 1-2:30PM. Register here!

To join the audio conference only, please call in one of the following numbers:

Local: 1-518-549-0500
Toll Free: 1-844-633-8697
Alternate Toll Free - (For callers not able to call the 844 Toll Free Number): 1-866-776-3553
Follow instructions you hear on the phone.  The Cisco Meeting Place meeting ID: 640 465 742

Click here to view the slides of webinars held by OPWDD on February 23 and 24.

The 30-day public notice and public comment period for the draft transition plan is being held to solicit meaningful public input from recipients, providers and all stakeholders on the development of the draft transition plan. The public comment period ends March 18, 2015.

Comments and suggestions can be mailed to:

44 Holland Avenue, 4th Floor
Albany, New York 12229
Attention: DQI HCBS Settings

Comments and suggestions can be emailed to Please reference "HCBS Settings Transition Plan Comments" in the subject line.

OPWDD will also accommodate input through private or group telephone contact no later than April 1, 2015. Contact Alicia Matulewicz, OPWDD Division of Quality Improvement, at (518) 473-9050 to make arrangements to provide verbal comments

What’s the issue?

Early this year, the federal government issued new guidelines that may affect how you as an individual with autism or a caregiver will receive services through Medicaid. New York has proposed revising its Medicaid program to comply with the new regulations, which can affect services such as in-home or out-of-home residential support, day activities like supported employment or day habilitation, and other services like respite and family support. For more information about these rules, check out this replay from Autism Speaks’ live chat.

What can you do about it?

New York is now required to seek public input. This is your opportunity as an individual with autism or a caregiver to affect how these changes take place in your state.

The new rules were published in early 2014 by the Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for administering the Medicaid program. The regulations outlined criteria for certain HCBS programs operated under specific Medicaid waiver programs.

Medicaid HCBS programs provide a variety of services and supports that individuals with autism need to live in the community. These programs offer an alternative to institutional services for people with disabilities who need ongoing support to meet their functional needs. All states operate HCBS programs that serve individuals with developmental disabilities, like autism, but these programs vary widely from state to state in terms of eligibility requirements and available services. More information about Medicaid HCBS is available online.

What do the new rules mean?

The rules require all Medicaid HCBS programs to allow individuals to be able to choose their services and have access to the community. In particular, states are prohibited from using HCBS funding for settings that isolate individuals from the broader community. This is an important new protection that could help individuals with autism live in settings that are more integrated with the community.

However, in implementing this new requirement, each state Medicaid office has significant discretion in determining whether a given setting results in “isolation.” As a result of the rules, states are beginning to 1) identify the type of settings that may no longer be in compliance with the new rules, and 2) develop plans on how they will change their HCBS programs.

CMS developed these rules over a number of years, and Autism Speaks has long been involved in helping ensure that the needs of the autism community were represented in the development of these new standards. Now that the rules are final, states are beginning to implement the necessary changes to their programs including identifying the type of settings that may no longer be in compliance with the new rule, and to develop plans that outline any changes they will make to their HCBS programs as a result.

What is Autism Speaks doing and what can autism families do?

During this process, states are required to obtain input from advocates and Autism Speaks urges each state to seek and incorporate stakeholders’ views on what constitutes isolating settings and how best to integrate individuals into the broader community. For more information on Autism Speaks’ position on Housing and Residential supports, view our position statement here. Individuals with autism and their family know firsthand the barriers to true community integration and are the most appropriate individuals to help define isolating settings.

Not sure what to say?

  • Medicaid policy can be very confusing and the state documents that describe programs aren’t written in a way that most people can understand. But that shouldn’t stop advocates from expressing their opinion. CMS has published two sets of exploratory questions to assist states in assessment of residential settings and non-residential HCBS settings, that advocates can use to help them think about their experiences and create their message to state officials.

If you are in a waiver program already, use these questions to tell about your experience. For example:

  • What was your experience planning your waiver services? Were you able to choose the services you wanted and get them where and how often you wanted?
  • Does the place where you get your services reflect your needs and preferences? Did you have options to choose from?

If you are not yet receiving waiver services (because you are on a waitlist or otherwise) but expect to be using waiver services in the future, use these questions to talk about what services will be important to you in the future. For example:

  • Do you want to be able to work? If not, what type of meaningful non-work activities would you like to be involved in?
  • Would you like to have roommates or live on your own? How often would you like to have visitors? What types of supports are necessary for you to live as independently as possible?