Family Support Coalition March 14, 2013

Family Support Coalition notes – March 14, 2013

1. There continues to be problems with Coalition emails getting bounced back. Gail Frizzell, Coalition secretary, has been working on resolving the issue, and passed around a list of addresses so that meeting participants could check their address for accuracy. If you’re not receiving information via email from The Coalition, please call 732-770-0475.

2. Medicaid, Fee-for-Service, and other changes to DDD services Liz Shea, DDD - In order to obtain DDD services, individuals must be 21 years old, meet DDD’s criteria for functional eligibility, and be Medicaid eligible Although services won’t start until 21, individuals can begin the process of applying for DDD services (both the functional eligibility process and the Medicaid eligibility process) at 18. Information about Medicaid Eligibility:  Individuals must be Medicaid eligible or in the process of applying for eligibility by March 23, 2013 (Please note: March 23 is not a hard and fast cut off. IF someone has started the Medicaid application process, then they will keep DDD services while they are going through the process. However, they MUST keep DDD informed about where they are in the process.)  1500 letters have gone out to people thought by DDD to not be on Medicaid. The letters have been sent to residential settings, DDD day programs, individuals living at home, and service providers. DDD is now in the process of collecting information about any inaccuracies and cleaning up their data.  Most people can become Medicaid eligible; it’s just a matter of working through the process. However, some people will have trouble becoming Medicaid eligible. The two primary reason for people being found to be ineligible for Medicaid are:  Too many assets . Individuals may be able to take financial action (for example, establish a special needs trust) in order to attain eligibility status.  Income is too high . Many people who are dual eligible (i.e., receive SSI and SSDI) have Disabled Adult Child (DAC) status and are still able to receive Medicaid. However, some people who started receiving SSDI before SSI are not considered DACs, and their income may be too high to qualify for Medicaid. DDD is committed to finding a solution to this problem so these individuals can still receive services, but don’t know yet what that solution will be. They’ve said that no services will be lost in the meantime.  Some individuals have not been in the country long enough to become Medicaid eligible (at least 5 years). DDD thinks this is a small number of people. They don’t know yet if they’ll lose benefits.  A Medicaid eligibility troubleshooting form is on the DDD website, and can be filled out and returned to DDD for assistance. Each situation is different, and DDD is trying to be flexible as solutions are found.  Communication to DDD from families about the status of their Medicaid process is key, both for finding solutions to individual problems, and so that DDD has the necessary data to go to the state and find solutions for problems that effect more people. Tom Papa, DDD The Supports Program is part of the Comprehensive Waiver. (The Community Care Waiver, or CCW, is separate from the Comprehensive Waiver, and is meant for people with a higher level of need and/or residential supports.) Components of the Supports Program include: Non-residential services (i.e., unlicensed settings) Day services New Individualized Service Plan

1 New assessment tool

Family Support Coalition notes – March 14, 2013 Page 2 of 4

New Fiscal Intermediary (DHS is about to put out public bid for a new FI) Improved IT system Fee-for Service – this is just one part of the Supports Program Benefits of fee-for-service from the family perspective  Individual purchasing power  Greater flexibility  Greater array of service options  People will have an Administrative Budget that will cover things like the Supports Coordinator and Fiscal Intermediary; an Employment/Day Services Budget; and a Supports Budget (currently there are 3 levels for the Supports Budgets: $5,000, $10,000, $15,000) For providers, fee-for-service effects how they get paid  Currently, providers have a contract with DDD. DDD “front loads” payment, meaning DDD pays providers ahead of time for services/slots/capacity.  With fee-for-service, money is with the individual. Each individual will pay for the specific services in their Individualized Service Plan out of their budget. Providers will bill Medicaid for the services provided after they are provided (i.e., will get reimbursed for services provided). Additional info about the Supports programs:  CMS must be assured that individual’s needs are being met, so if someone isn’t spending all of their budget, DDD will have to look at why (for example, have the person’s needs changed? Are they not able to find the services they need?)  Eventually the CCW will become fee-for-service as well, but not yet. That means that there may be two individuals in the same program, one on the CCW (not fee- for-service) and one on the Supports Program (fee-for-service), and there may be different rates for the same services, or the two individuals may be receiving different services even though they’re both attending the same program.  Nursing – DDD is exploring options in covering nursing needs of individuals  2013 Graduates – Initially they will be put in an interim system (i.e., will use the new ISP, have a Support Coordinator, won’t go into services that won’t be available through the Supports Program). It will be a lot of work at first, but the good news is they’ll be the first group to go into the new Supports Program once it starts.  There has to be a formal rate setting process, but getting an approved rate setter has been held up in Treasury – which in turn is holding up the roll out of the Supports Program. Once the rate setter is approved, open forums will be held to obtain input from families and providers regarding rates.  There’s a need for expanded capacity to provide enough trained Supports Coordinators for everyone in the Supports Program. It will be important to have adequate rates set for Support Coordinators, as well as the necessary training to prepare them for their expanded roles. According to DDD, there has been lots of interest on the part of providers (in and out-of-state) in providing Supports Coordination.  Questions re: Medicaid eligibility – send to DDD’s Medicaid Help Desk [email protected]  Questions and feedback re: Supports Program – send to DDD’s Supports Program Help Desk. [email protected]

2 Family Support Coalition notes – March 14, 2013 Page 3 of 4

 Other questions or feedback: contact Liz Shea [email protected] or Tom Papa Tom Papa [email protected] Please specify whether you would like a response.  Liz said that a new draft of the Individual Service Plan (ISP), provider qualifications, service definitions, FAQs and other information is available on DDD’s website, and that people should keep checking the website for new updates. http://www.state.nj.us/humanservices/ddd/programs/supportsprgm.html

3. Update about DCF  DCF advisory board meetings have not been a good place for problem solving about issues related to children with DD and their families.  There is a sense that DCF doesn’t really understand Family Support as it’s been defined by the DD system. In particular, there seems to skepticism about/distrust for self-directed/cash option respite. There also a sense that DCF doesn’t really understand the DD population and the specific needs of those families.  There seems to be some tension between mental health and DD representatives on the advisory board. In particular, it was felt that insisting that the needs of children with DD are unique because they are lifelong does not recognize the lifelong nature of some mental health problems. In addition, there seems to be some resentment on the part of the mental health providers that families who have children with DD have been getting family support services such as respite for years, and that hasn’t been the case for families who have children with mental health issues.  A Coalition member noted that a system that provides family support for some families but not others may be difficult to sustain over time.  Rather than argue about which disabilities are lifelong, or which families have it the hardest, we need to focus on presenting specific information about what DD families look like and what their needs are. With that in mind, the Family Support Coalition Executive Committee met to come up with some possible strategies to help educate DCF about the needs of our families:  Bonnie and Kathy will be meeting with DCF and PerformCare to talk about the family support services families needs, including presenting data from the Survey of Family needs that was completed by the Family Support Councils (this has already been given to DCF and PerformCare, but we’ll summarize the results again). In addition, we’ll present some real-life scenarios to give a better sense of what families are coping with.  The Family Support Coalition will look into hosting a breakfast where DCF and PerformCare can learn first-hand about DD family needs. The idea is to create a friendly, informal atmosphere where DCF and PerformCare people can meet DD parents and children, and really talk with them about their needs. We will be looking for suggestions of families who might like to participate, are willing and able to bring their children, and can speak about the role family support services have played in their lives.  The suggestions was made that FS Coalition providers reach out to the FSO and Family Success Center in their area to help educate them about the needs of families who have children with DD (maybe invite them to meet some families and children, see a family support program, etc.). The Family Resource Network has been proactively reaching out to FSOs and FSCs to establish relationships. Ronnie Trathen from FRN

3 Family Support Coalition notes – March 14, 2013 Page 4 of 4

said she’d be happy to talk to anyone about ideas for outreach. [email protected]  The FS Coalition and FS Council are considering creating videos of families providing care to their family member with a DD as another method for strengthening our message  Chris Peters, a Family Support Council and Coalition parent, listed a number of ways DD families can get involved in the DCF system and make their voices heard (for example, through the CIACCs – the Children's Interagency Coordinating Councils in each county – and the FSOs). She will write something up for dissemination to the Coalition. For more information, you can contact Chris directly at [email protected]  Camp notes  There have been many timing issues involving camps becoming eligible to serve families through DCF, and families being able to get necessary paperwork in by deadline.  In order to be listed on DCF’s list of camps, camps must have certificates from the Department of Health (these weren’t available until March 1), proof of liability insurance, proof that background checks are being done for all camp staff  The issue of eligibility for DCF-financed camp fund for children turning 21 during the summer is still being worked on.  Information, including how camps can become DCF qualified providers, is on the PerformCare website http://www.performcarenj.org/families/disability/summer-camp.aspx  Hotel Respite  Cape May children’s hotel respite facility is no longer available (it was on the Vineland campus, and DDD has said it’s no longer available for children). 83 families are now without services  A plan needs to be developed with DCF on providing hotel respite

4. Family Support Coalition Membership renewals will be going out shortly. Membership for family members is free; for providers it’s $35.