Meeting Minutes – March 11, 2014

Executive Committee Members in Attendance: Bonnie Brien (President), Cheryl Resnick (Treasurer) and Veronica Trathen (Secretary).

Annual Membership Review – All members must complete a membership form. Forms were distributed but are also available on the Coalition website. This is an annual renewal process. Providers are $35 and Families are Free. Membership deadline is May 1, 2014.

Presentation by Clarence Whittaker, Manager, Community Services Children’s System of Care, Department of Children and Families.

  • CSOC requested that no details on the FY 2015 Budgetbe discussed at this time
  • CIACC participation was recommended if families are looking to provide input on children with IDD in connection with the Department of Children and Families
  • Brief review of DCF Community Services/IDD
  • It is the responsibility of DCF to meet the needs of children with I/DD and their families not met by the school district, covered by medical benefits or available within their local community within limited resources
  • Currently Family Support funds are “state-only” dollars and thus there is no Federal match but DCF anticipate this will change as the department plans to move to a Medicaid platform for services wherever possible. As DDD is currently implementing for adult with I/DD
  • Partnerships and stakeholders (families, agency providers (mental health & DD), and Perform Care) participate in the DCF Children’s Transition Advisory Board that began meeting in January 2013. The group has not met since June of 2013; next meeting is scheduled for April 21, 2014. Membership was determined by DCF. Issues/concerns should be directed to these members to communicate to those participating in these transition meetings. Coalition members can provide this information to Bonnie Brien.
  • What has the Children’s System learned about children with I/DD and their needs over the last year? DCF spent time prior to the switch to learn about the I/DD population. The array of long- and short-term services provided by DDD was new to DCF. Respite was a new service to DCF and the high number of requests for “respite” was unexpected. Overnight Respite was not known to DCF prior to the switch and unfortunately this service has been lost but they hope to reinstate this service.
  • The portal through which families with children must enter the system is PerformCare. This contracted company has been in place at DCF to serve previous populations primarily children with mental health issues. Thus, our families with children needing support services must also enter the system through PerformCare as well.
  • Intakeis done through PerformCare with families needing to complete a standardized applicationover the phone. This tool is used to determine eligibility and need for services.
  • If a child and their family are determined eligible, needs are assessed based on a series of questions that identifies the scope of the family’s needs including level of need.
  • Applications remain active for 1 year; families need to complete the application yearly. If the family situation changes they should call to update PerformCare. 90-day reviews are performed for any family receiving a service for their child to confirm the service is still needed or if their needs have changed and a different service is needed. Whenever a different service is requested a new application needs to be completed and a review for the new service will be performed.
  • Families stressed that the need for support services generally does not change from month-to-month or year-to-year for families caring for children with I/DD. If anything it can worsen due to a parent becoming ill, divorce, or other crises that make the situation more difficult. If anything, our families experience more stress and difficulty in caring for their child as they themselves age and their children become bigger and more difficult to physically manage.
  • Families raised a concern about the waste of resources as a result of quarterly review of services for our families and asked that the need for this process be re-evaluated.
  • All data is collected and entered into an electronic database, referred to as an “e-record.” Based on assessment and level of need, PerformCare matches the service within the geographical area. If an open slot is available, the provider agency is contacted to reach out to the family directly.
  • If the requested service is not be available within the geographical area, the family is put on a wait list. Families are told at the time of the request if the service is available or if they will be put on the waiting list. Respite is the most often requested support service and therefore there is generally a waiting list in almost every geographical area.
  • CSOC’s expectation is that any family with a high level of need will not lose service(s)
  • A committee meets weekly to review requested services and resources
  • Providers raised an issue they are experiencing with “partial open slots” and the inability to fully use a given slot in a specific program. Under the previous DDD system agencies could provide a more fluid services to families. The following examples were given:
  • After School Program: previously a slot in an After School Program could be filled by 2 families if one family needed only 2 days/week and another needed 3 days/week. This way the provider could support 2 families while fully using the funding provided.
  • Saturday Recreation program: previously families could call last minute for an open slot. It is important to recognize that children get sick, have parties etc and by filling a slot with one particular family every Saturday of the month sometimes slots go unfilled leaving families without this support on an as needed basis, and funds are wasted when the slot is left unfilled because a child does not attend.
  • Clarence stated he would take this information back to CSOC and PerformCare and the goal is to fully utilize all services. He recommended that providers with open slots communicate this to PerformCare and ask for Debbie Seals.
  • The database is to help CSOC and PerformCare identify gaps in services by area.
  • Applications are kept on file for one year. Quarterly renewals are needed. A new Family Support Application needs to be redone annually. The quarterly renewal was noted as time consuming for families and it was requested that this be looked at and done less frequently.
  • The electronic medical records database known as Cyber used by PerformCarewill soon be available to providers so they can match families with services. This system is currently used by behavioral/mental health providers for residential placements.
  • The inability of providers to access Cyber has caused difficulties in identifying openings and gaps in services. DD providers expressed the need for more training opportunities are needed as the system goes live.
  • Providers reported that there is short notice and limited flexibility for the trainings making it difficult for them to attend.
  • There is no timeline as to when CSOC will move from contracted services to a fee-for-service system.
  • Camp funds come from a separate pool of money from Family Support Services under CSOC.
  • There is a noted lack of in-home and residential services. While CSOC continues to fund the contracted service cPEP, the need for expanded in-home services is evident.
  • In an attempt to meet these needs DCF has issued 2 RFQs for intensive in-home services for the DD population through 2 pilot programs each will serve 200 individuals and their families
  • ASD pilot program:Criteria: child must be less than 13 years old and eligible for the FamilyCare program (Medicaid), some of whom may already be connected to a CMO through CSOC. It will provide a variety of supports within the home including ABA services
  • I/DD pilot program: Respite services in or out of home (after school or weekend) for children, youth, adolescents, or young adults under the age of 21.
  • Those interested in learning more can review the RFQs at the following website:
  • Children’s services were not included in the original waiver. When renewal comes this maybe considered.

Self Directed Cash Opiton Respite (SDR)

  • Coalition officially sent 2 letters to DDD in reference to the planned changes to this program. First letter reviewed the manner in which notification (or lack of) was made to providers and families, the impact of this change, lack of stakeholder input on the timeline and how changes to this program would be implemented. The second letter requested the that the termination of SDCOR be extended to June 30, 2104 to allow families by noting the difficulties in meeting the requirements of the few options available within an extremely shorty timeframe. The letters are posted on the Coalition website.
  • There are many major changes happening at the same time for both families and providers which has created a previously unprecedented level of stress and all involved are overwhelmed.
  • Coalition has sent out a spreadsheet to collect data to providers previously administering this support on the number of families who had been receiving this support, which options families are interested in moving forward with, what if any respite option service providers are able to offer. The Coalition plans to use the data collected along with information from families on what the impact of this change has been like for their family. Data along withpersonal stories of the impact related to these changes and how their day to day lives have been affected would be used to begin a discussion with identified legislators as a starting point around how the many other changes within the systems have impacted on individuals with I/DD and the families. The ultimate goal will be to educate our legislators about the consequences of these changes within the framework that there has been minimal opportunity for stakeholders to collaborate with both DCF and DDD about how major changes are developed and implemented in an attempt to minimize unintended negative consequences to individuals with I/DD and their families.
  • Providers present agreedto collect the data over the next couple of months to assist with the data collection around SDCOR. Bonnie Brien will resend the spreadsheet to all provider members.

2015 Budget: Donna Bouclier, ABCD

  • Donna Bouclier briefly presented the funding as it relates to the I/DD population as proposed by Governor Christie. See attachment “DDD FY 2105 Budget Briefing” document

General Updates

  • Senate Budget and Appropriations Committee Hearing March 19th – Bonnie Brien will present testimony on behalf of the FSC. Available on the FSC website under “FSC in Action”
  • It was shared that a new Bill A2717Requires one-time application for requesting services for individuals with developmental disabilities from DCF and DHS. The bill was introduced on February 24 and by Assemblywoman Valerie Huttle. A copy of the bill can be viewed at:
  • Cheryl Resnick will share a Rutgers link that offers free trainings in collaboration with DCF to families of children with I/DD similar to that of the Bogg Center for adults.

Meeting Dates for 2014 Lawrenceville Library (Note change in day of week: Tuesday’s in 2014)

June 10

September 9

December 2

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