In FSSAC Minutes, Minutes
  1. Announcements : Handouts May 15

Family Support Services Committee
Tuesday, May 12, 2015, 10:00 am – noon
YAI, 460 West 34th Street, 11th floor
Information: Amy Bittinger (718) 859-5420 x 234;

Transition Committee
Wednesday, May 13, 2015, 9:30 am – noon
AHRC, 83 Maiden Lane, 11th floor Board Room
Information: Kathy Kelly (212) 780-2724;

Service Coordination Committee
MSC Forum
Thursday, May 28, 2015, 9:00 am – 4:00 pm
Pre-registration required. $25 fee
Pace University, 3 Spruce Street, Upper Level
Information: Carol Lincoln (718) 859-5420 x 225;

DD Council
Thursday, May 14, 2015, 9:30 am- noon
SNACK, 316 East 53rd Street (bet. 1st and 2nd Ave.)
Information: Marco Damiani (212) 947-5770 x 456;

Legislative Committee
Next meeting to be announced.
Information: Jim Malley (212) 928-5810 x 101;

Children’s Committee
Next meeting to be announced.
Information: Christina Muccioli (212) 780-2532;

Outreach & Family Engagement
Next meeting to be announced.
Information: Lynn Decker (917) 575-5166;

NYC Fair (see attachments):
Meet the Transformation Panel
Tuesday, May 19, 6-8 pm
InterAgency Council, 150 West 30, 15th fl.
RSVP: www,

NYC FAIR: Parent Panel on Advocacy for Children from Birth to 21 Diagnosed with Special Needs
Tuesday, June 2, 10-noon
Sinergia, 2082 Lexington Ave.
RSVP: www,


Sad News

Margaret reported the passing of Michael Yee, beloved son of Manhattan Family Advisory Council member Yee Wah Yee. Condolences may be send to Yee Wah Yee, 46 Madison Street, 9J, New York, N.Y. 10038.

Alice Anderson, long-time parent advocate and inspiration to many of us, passed away last week. Condolences may be send to her husband, Arthur Anderson, 13 West 13 Street, New York, N.Y. 10011.

  1. Report on Statewide Family Support Committee Meeting, March 11, 2015

Commissioner’s Report

    • 2015-16 State Budget – Negotiations were in progress when we last met. [Subsequently, the budget was passed and was reported on at our Manhattan Family Support Services Advisory Committee meeting.]
    • Transformation Panel – Acting Commissioner Delaney announced that a panel of experts has been called together by the OPWDD to examine the challenges OPWDD faces in implementing the Transformation Agenda, offering managed care in our system and ensuring its long-term fiscal sustainability for people currently receiving services as well as those who will need to access our services in the future. The panel will be asked to shape recommendations. The panel will include people with intellectual and developmental disabilities and their families, advocates, and providers. OPWDD will solicit input from the statewide FSS Committee and will hold forums to gather input.   A one-day symposium will be held in late September 2015 to develop a series of strategies to implement the panel’s recommendations. Particular focus will center on housing options and community living as well as the implementation of the new HCBS settings rules.
    • Sheltered Workshops – The transitioning of sheltered workshops into more integrated workplace settings is part of OPWDD’s Transformation Agenda with the Centers for Medicare and Medicaid (CMS). OPWDD will hold a daylong conference, entitled “Creating New Models for Integrated Employment” on May 8 in Albany to explore new integrated employment models following the phase-out and transition of sheltered workshops. A portion of the conference will be devoted to discussion about individuals for whom new employment options may be more challenging.
    • Updating the Residential Waiting List – OPWDD is reviewing its residential waiting list. Regional offices will reach out to the 12,000 individuals currently on the list to find out what their real needs are and when services are needed.   In 2014, approximately 813 individuals obtained certified residential opportunities through vacancies in existing residences. Most of the 813 came from family homes and were people in crisis situations (those on the Priority 1 list). Acting Commissioner Delaney stated that some new residential development is underway. She promised to keep the committee updated.
    • Ongoing Discussions with CMS re rates – OPWDD is hopeful that CMS will soon approve the new rates for IRAs, ICFs, and day habs. Negotiations are continuing for four other services – SEMP, pre-voc, respite, and family care.
    • CMS Medicaid Disallowance Update – The committee discussed the situation in regard to CMS charges that OPWDD had overbilled for its developmental centers.       [Subsequent to the meeting, as reported in the last minutes, a settlement was reached between NYS and CMS, whereby NYS (not OPWDD) would pay $850 million this year and then 10 smaller payments annually.]


HCBS Settings Update/OPWDD Transition Plan

Maryellen Moeser updated the committee on HCBS Settings and OPWDD’s Transition Plan.

  • The NYS Statewide Transition Plan is posted on the DOH website.
  • Key elements of HCBS Setting Rule:
    • Full access to greater community
    • Choice of where to receive supports and services
    • Non-disability specific setting
    • Right of privacy, dignity and respect
    • Optimize autonomy
    • Choice of services and who provides them
    • Legally enforceable lease or agreement
    • Privacy in living arrangement (e.g., lockable bedroom doors)
    • Choice of roommates
    • Freedom to furnish and decorate own living space
    • Control over daily schedule
    • Visitors/food at any time
    • In terms of restrictions outlined in an ISP, any modifications must be supported by an assessed need
  • Federal HCBS Settings Rules will be effective in NYS in October 2018.

Self-Direction Update

Anne Swartwout updated members on changes to the Self Direction (SD) program, formerly called Consolidated Supports and Services (CSS). In February 2014, CMS informed OPWDD that the CSS model was not compliant with federal guidelines.   OPWDD developed and implemented a new model in October 2014. Families have been concerned about several changes, but especially about the revised fiscal intermediary (FI) reimbursement fee levels which many FSS members believe are too low in New York City, causing some FI entities to refuse to accept new cases.   Anne explained that the revised fee levels were determined by an analysis of cost data from the Consolidated Fiscal Reports (CFR) as well as administrative expenses reported in the CFR. Committee members urged OPWDD to take a more proactive approach to resolving the issue.   They requested a list of all FI providers statewide accepting new cases.

Follow-up on Resolution of Issues of Access to Family Support Services

Since July 2014 the committee has been trying to resolve issues of how to ensure access to family support services in a system that relies on a one-person-at-a-time (Front Door) procedure and that no longer allows statewide RFPs for new or expanded services. The thorniest questions have now been resolved: how to identify gaps in services and how to create new or expanded services in the absence of an RFP. Much progress was made at the last meeting.

  • Identifying Gaps in Services. It was agreed that:
    • The Service authorization letter issued by the Front Door should include a statement that if families cannot access authorized services, they should notify OPWDD via an email drop box.
    • OPWDD will utilize the EAA tool (which records services that have been authorized) to get a better handle on service gaps by comparing the services that were authorized with those for which billing was or was not claimed. Then follow-up would be done to find out why the authorized services were never provided.
    • The Front Door will regularly communicate information re gaps in services with the local FSSAC Councils and FSS Coordinators.
  • Creating or Expanding Waiver FSS Services. For example, what happens when several families in a region need an afterschool program but there are none? The following procedure will be used:
    • The initial request for a new service will be presented to the DDRO either by a provider or by individuals in need of the service. If a provider has not been identified by the families, then the DDRO can reach out to a provider.
    • If the DDRO approves the request, the request will be recorded in the development plan. Funding for the new services will come from the funds made available for development of services in the enacted budget.
    • In cases where there is a demonstrated need for creating/expanding non-waiver FSS services, an RFP would have to be issued specifically for the region. There will not be any more statewide FSS RFPs.

Abiba Kindo, Associate Commissioner, offered to share these and previous resolutions with Front Door staff and Family Support Services Liaisons.

  1. Speaker: Linda Schellenberg, Director of Community Service, Center for Family Support, on How to Develop a Complete Profile of Your Child

Linda explained that a personal profile of your child describes what is important to and for your child, what your child likes and what your child does. The person-centered plan can become a letter of intent, which is a document stating this information for others who will be in your child’s life when you are no longer here or no longer able to advocate for your child. Lawyers often advise parents to write a letter of intent.

As part of the plan, you can compose a one-page document describing the most important things about your child. You can use this one-pager whenever there are new staff people in your child’s life.

Linda emphasized that it is critical to review and update the plan on a regular basis to be sure it captures any changes that have occurred.

The attachments that Linda provided are excellent tools that will be helpful in composing the full profile as well as the one-pager. Schellenberg materials



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