New Jersey Family Support Coalition

Meeting notes

March 25, 2010

Joe Amoroso, Division of Disability Services:

Spoke about the transfer of DDD cases to DDS information and referral services.

  • DDS has 5 people on staff doing information and referral
  • It has been 8 months since DDD began transferring cases to DDS
  • So far, 5,100 families have been transferred from DDD to DDS
  • There are still about 20,000 families still on Resource Case Management at DDD that need to be transferred to DDS.
  • So far, DDS has been able to divert 500 calls from DDD services by finding other programs to meet the need of the caller\
  • 280 people have been sent from DDS back to DDD Interim Case Managementfor more short or long-term intensive supports to stabilize the situation; DDD seems to feel that DDS made the right judgment calls about these. Interim case managers are supposed to respond to families within 72 hours. DDS follows up to make sure that happened.
  • DDS is careful about taking complete notes so that families don’t have to repeat their stories each time they call, and those notes are available to DDD case managers
  • High priority behavioral needs (for example, self-injurious behaviors, abuse of siblings) go back to DDD
  • They have noticed some problems, including:
  • Families who do not know what DDD does (DDS is in the process of putting together some written informational materials for families)
  • Varying DDD policies and procedures based on region
  • DDD infrastructure has created some difficulties, including trouble delineating the responsibilities of DDS vs. the responsibilities of DDD (for example, uncertainty about who should let families know whether or not their request for a Family Support service has been approved)
  • Joe reminded us that anyone with a disability can utilize DDS information and referral services regardless of whether or not they are registered with and/or receiving services from DDD

Fiscal Year 2011 Budget Update:

Denbigh Shelton listed some of the highlights of Governor Christie’s proposed FY2011 budget and there was some discussion amongst Coalition members aroundthe implications of these proposals.

  • A line item for day services for graduating students and funding to serve the approximately 200 individuals graduating this spring who will be needing day services (some Coalition members questioned this number, and wondered if there were a lot more graduates that would be in need of day services)
  • The Cash Subsidy/Voucher/Stipend program has been eliminatedand the funds are being diverted to serve people on the waiting list(note that this is different from the Cash Option Respite, now known as Self-Directed Respite, which was not cut).
  • A cap of $300 per day on out of home or hotel respite
  • Funding to serve 130 people off of the Community Care Waiver Waiting List (formerly known as the Residential Waiting List)
  • Funding to move 62 people from Developmental Centers into the community
  • A 10% cut to sheltered workshops, transportation to/from sheltered workshops

Family Support Coalition Meeting Notes March 25, 2010 (page 2 of 3)

  • NO Medicaid co-pays (with the exception of medical day care)
  • A reduction in the Catastrophic Illness in Children Relief Fund from $9 million to $1.7 million

The larger context of New Jersey’s terrible fiscal environment was discussed, and the need to find a good balance between advocating for what we need (Family Support!) and recognizing that many people are suffering from budget cuts in all sorts of areas. We’re not just families of children with disabilities; we’re also members of our communities and are as concerned as everyone else about the cuts to education, about roads that have pot holes that need fixing, etc.

Advocacy:

Kathy gave an update on the Coalition’s advocacy efforts since our last meeting. These include:

  • A letter to Gov. Christie immediately following his inauguration introducing the Family Support Coalition and speaking of the importance of Family Support
  • Collecting family “To Do” lists. Coalition members disseminated the request; as of now, approximately 25 families have submitted lists.
  • Emails to Ken Ritchey and Frank Kirkland at DDD with questions about the emergency day services waiting list process (when that looked like that was going to happen), and including one of the To Do lists which provided a good example of why we were so concerned for families.
  • A letter to Gov. Christie a couple of weeks before his budget address emphasizing the importance of Family Support and including a packet of family To Do lists.
  • Bonnie Brien, Family Support Coordinator for the Family Support Councils, also collected To Do lists from Family Support Council members, and we decided it made sense to combine the efforts of the Coalition and Councils. We sent, on behalf of the two groups, a letter emphasizing the importance of Family Support, and a packet of family To Do lists, to 25 legislators who are on the Assembly/Senate budget and health and human services committees.

Members discussed ideas for advocacy between now and the finalization of the budget in June.People felt that it was important that we continue to make the case for why Family Support is so critically important, and to raise the issue of Family Support whenever possible. People also discussed speaking out about the need for the Cash Subsidy, now known as Special Needs Supports, which was eliminated from next year’s budget. Some of the ideas for advocacy strategiesincluded:

  • Attending budget hearings
  • Meeting in person with legislators
  • Inviting legislators to have dinner with several families in a family’s home
  • Encouraging families to send pictures of their family, with a message on the back, to their representatives.
  • Families going to local events which legislators are attending, and introducing themselves (and if possible bringing their family member with a disability). Providers can help inform families of these local events.
  • Using the To Do lists as a way to start a conversation with legislators about Family Support issues. Bringing a copy of their own To Do lists to a meeting with a legislator, or including it with a letter, or with a photograph of their family, can be a powerful way to showwhy a family needs Family Support services. The following is a recap of the Coalition’srequest for To Do lists in case anyone wants to use it to help families think about how to write their own lists:

Family Support Coalition Meeting Notes March 25, 2010 (page 3 of 3)

  • The ideais to make alist ofthecaregiving details of a typicalday, or part of a day.This isn'tanything that should involve a lot of writing.People don't evenhave to write in complete sentences!They can justkeep a piece of paper somewhere handy, likethe kitchen counter, and add to it throughout the day.They canchoose to write about one whole day,a part ofa day, or a composite pictureof many days. In addition to hands-on tasks, including things liketime spent making doctor appointments, talking to school personnel,managing behaviors (how many tantrums in a typical day?), ortrying to get out of the house would also be wonderful. It would also be helpful to include the age of the child (changing diapers several times a day is a whole different thing at 18 than at 2!).
  • Thank the Governor and Commissioner Velez for their efforts to preserve services and provide some funding to address the ongoing needs of the developmental disabilities community during these extremely difficult budget times.
  • For example, you may want to thank them for including a line item with funding for day services for graduating students, and funding to serve 130 people off the waiting list. This can be something as simple as a thank you card, email, phone call, or sending a photo of your family with a two sentence thank you message written on the back.
  • Providers have been disseminating information to families and will continue to find ways to support families in advocating for Family Support. The Coalition can get advocacy requests out to its membership quickly through its email list, and providers can use the Coalition (including through the Coalition’s new website – see update below) to share ideas about what they’re doing to support families.
  • Recent advocacy activities of Coalition members include:
  • Jackie Moskowitzreported that The Family Support Center has been visiting state legislators to give them a copy of the Snapshots of our Lives book. Family members that are highlighted in the book are going to the meetings with their legislator. Bonnie Brien, Family Support Coordinator for the Family Support Councils, and other Family Support Council families, are also attending these meetings.
  • Brenda Powell of the Arc of Gloucester County spoke about going to an Open House of new assemblyman in their district, which provided them with a good opportunity to meet him face-to-face. She disseminates emails that she gets from legislators, especially notices of local events the legislators will be attending. In the past have hosted legislative forums with local, county, and state representatives. They now want to bring families to meet with legislators.
  • The Arc of Sussex County has been collecting stories from families about the importance to individual families of Family Support Services.

Other Updates:

  • DDD is moving ahead with the Supports Waiver (which will include Family Support services) and will be putting together a workgroup to help think out the details. They will also be getting feedback throughout the process from the Family Support Task Force, and will be seeking public input before the final application is submitted. They hope to have the application submitted by the end of December 2010.
  • The Coalition is in the process of creating its own website as a way for members to share information related to Family Support.

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