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Calls to Action

New Jersey Housing and Community Living

New Jersey 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 Jersey residents with autism live fulfilling lives in the community.
March 18, 2015

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

NEW! The New Jersey Senate Budget and Appropriations Committee and the Assembly Budget Committee will be conducting budget hearings on the Fiscal Year (FY) 2016 State Budget. This is your opportunity to let your legislators know about the needs of people with autism!

What is this about?

The availability of housing and community supports – including housing vouchers and Community Care Waiver slots – is directly tied to the amount of money budgeted by the legislature for each fiscal year. The amount of money for these programs also determines whether or not service budgets are capped and how much providers can be reimbursed.

The legislature will decide how much is budgeted – or appropriated – for all of the programs serving people with autism, including the Community Care Waiver.

What is the problem?

There are now more than 3,600 individuals with intellectual and developmental disabilities on the Priority Waiting list for the Community Care Waiver. Many of these individuals are living with elderly caregivers and if we don't help them now, their circumstances may quickly turn into emergencies.

For a $13 million investment, New Jersey can move 330 people off the Priority Waiting List and into the waiver in Fiscal Year 2016, which would be a 1/3 reduction in the waiting list. With an additional $3 million, the state can provide 300 housing vouchers, specifically for individuals with developmental disabilities, beginning in FY16. Housing is a critical concern for families caring for loved ones with autism and vouchers will ensure additional community living opportunities exist.

How can I get involved?

Legislative budget hearings are happening now and individuals can provide public comment about the needs of individuals with autism at these hearings:

March 18, 2015, 9:30am

Passaic County
Community College

College Theater
One College Boulevard
Paterson, New Jersey  07505

March 24, 2015, 9:30am

State House Annex
Committee Room 11
Fourth Floor
Trenton, New Jersey 08625

Individuals wishing to testify, must register in advance by completing an online form here!

New Jersey 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 as it forces states to make sure services are developed in a person-directed manner.

According to the state Department of Human Services, "The Centers for Medicare & Medicaid Services (CMS) issued a final rule on January 16, 2014 to ensure that Medicaid's home and community-based services (HCBS) programs provide full access to the benefits of community living and offer services in the most integrated settings.  New Jersey's Transition Plan outlines the steps required to come into full compliance with the final rule by March 17, 2019 for Medicaid's New Jersey 1115 Comprehensive Waiver Demonstration and the 1915 (c) Community Care Waiver."

Individuals with autism and their caregivers who receive or want Medicaid waiver funding can comment on the new proposal through February 26. Further information is available at the New Jersey Department of Human Services Division of Medical Assistance and Health Services HERE.

The State will hold Transition Plan input sessions for the public on the following dates, and in the following locations:

Wednesday, February 4th
10am - 12 pm
NJ Department of Human Services
222 South Warren Street
Trenton, NJ 08625

Thursday, February 19th
10am - 12pm
Department of Children and Families (DCF) Training Facility
30 Van Dyke Avenue
New Brunswick, NJ 08901

To submit written comments, send them by email to mahs.hcbs@dhs.state.nj.us or mail comments to: 

HCBS Rules
c/o Lowell Arye, Deputy Commissioner
NJ Department of Human Services
P.O. Box 700
Trenton, NJ 08625-0700

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 Jersey 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 Jersey 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?