Nadia Cabana, Executive Director of the Arc of Hudson County Spoke About the Work She Is

New Jersey Family Support Coalition

Meeting notes

June 24, 2010

Nadia Cabana, Executive Director of The Arc of Hudson County spoke about the work she is doing (under a grant from the New Jersey Council on Developmental Disabilities) to reach out to underserved families in her area.

Nadia discussed some of the issues that may cause a community to be underserved:
Language barriers
Cultural differences that may affect these families’ level of comfort in asking for help. Families may feel isolation, shame, and stigma about having a family member with a developmental disability.
New immigrants have trouble understanding how the system works and how to navigate it effectively
She has worked to identify and target outreach efforts to specific communities – South Asian, Muslim, and Latino.
A lot of the outreach efforts have been done through places of worship
Her experience has shown that many of these communities are more receptive to information and resources if it comes from a fellow member of the community, rather than an “outsider”
She is looking for members of each community who are willing to serve as points of contact for other members of theircommunity
She provides these people with some basic information that they can then share with others
She also hold training sessions for anyone interested in learning about the developmental disabilities system and services
She has reached out to a local clinic, Head Start, and other community agencies
Nadia stated that this project is still in process and one of the things they hope to do is develop materials in other languages
One of the unforeseen benefits of this project is that they have gotten to know about other agencies and resources in their community that they weren’t already aware of
Kathy added that there is a New Jersey Statewide Network for Cultural Competence that, over the last several years, has organized two disability-related conferences (one for the Latino community, and one for the South Asian community), and which hopes to organize other conferences for diverse communities in the future. To learn more about the Network, including how to join its listerve, go to

Updates:

Denbigh gave an update on the status of the budget.
The Contribution to Care has been completely restored and will remain at 75% of unearned income with a $40 per month personal needs allowance.
The Governor’s proposed $3.5 million cut to sheltered workshops and related transportation has been restored by $3 million, leaving a $500,000 cut in the final budget.
Unfortunately, the proposed $12 million cut to Early Intervention was not restored.
The proposed co-pays for Adult Medical Day care have been eliminated in the final budget.

Family Support Coalition Meeting Notes June 24, 2010 (page 2 of 3)

Maximum reimbursement rates for Personal Care Assistance were set at $15.50 per hour in the final budget (they were $16.15/hour, the Governor’s budget proposal called for a decrease to $14.05/hour)
There is also new language in the budget that requires DHS to give a report to the Legislature and Governor by January 1. 2011 on their efforts to bring people in out-of-state placements back into the state.
The recent Star Ledger article on the budget mentioned something about $800,000 for “respite.” As far as we can tell this is not related to DDD – we think it has something to do with partial care – but we’ll let people know if we hear otherwise.

Concerns were expressed about providers cutting transportation programs to deal with issues of underfunding
Jen Bulvanoski is no longer in charge of Family Support at DDD. Missy Balmir has now assumed that role. Kathy will invite Missy to our September 30 meeting so that Coalition members will have an opportunity to meet Missy, hear her thoughts about Family Support, and share their own questions and concerns.
Family Support Councils
This year, Council #7 is not doing a provider fair in Camden this year. The turn out has been very low, and pretty much the same people come who can drive. Instead, Council members are trying to attend other types of meetings in the community in order to reach out to new families.
Council #3 held a combined meeting for Somerset and Union counties, where PLAN/NJ presented.
Family Support Providers
Providers are hearing from families that they still haven’t heard about camp funding. Families expected to hear during the month of May, and are frustrated because it is now the end of June and camps are starting.
Some providers also reported that they are not receiving referrals from DDDcase managers for hotel respite and self-directed respite, even though families are requesting these services. Not all providers are having this problem, but for those who are, there is concern for families who need these services, and there is concern that when providers are unable to fill open slots, this leads to underspending, and providers then have to return unspent money to DDD. This past year, unspentFamily Support funds were taken from Family Support and used for other DDD services, and people are worried this will happen again. Bonnie Brien, Statewide Family Support Coordinator, will send a message to Missy Balmir about our concerns both for the camperships and the referral process. The Coalition will also send a letter to Ken Ritchey outlining these concerns, and asking that problems with the referral process NOT be interpreted as a lack of need for Family Support services.
Providers are aware of multiple circumstances where, when a family contacts DDS to access family support services, DDS asks the family for detailed information about the program (ie: hours, location, cost, etc.). The family then has to contact the provider and then DDS again. Not only is this cumbersome to the family, but raises concerns about whether or not DDS has the information they need to handle information and referral requests thoroughly. Kathy Roberson will give this feedback to Bill Ditto at DDS.

Family Support Coalition Meeting Notes June 24, 2010 (page 3 of 3)

Family Support Task Force
Kathy explained that the Task Force is now part of an expanded workgroup that is working on a new supports waiver.
Kathy spoke about the status of the supports waiver,and stated that we will need to really advocate to ensure that the federal dollars that come back to NJ for this new waiver are reinvested into this waiver. Otherwise, the waiver will not be able to expand, and we will not have the funds necessary to serve more families. Coalition members should keep their eyes open for action alerts around this issue, which is of critical importance to the future of Family Support in NJ.
There was some discussion about DDD’s county-based forums. It seems that each county’s forum is different and people have had mixed experiences with them. Some people do get useful information about what’s in their community, but some people felt the forum they attended wasn’t well organized, and that more providers than families attended.
We are still unclear about the full impact of the changes to Hotel Respite and will continue to monitor the situation.
One provider stated that one of the areas they have cut back on is eating out. They now use a hotel with a kitchenette and use grocery shopping and cooking meals as an activity.
Bonnie and Kathy continue to distribute the family to-do lists which have had a significant impact on those who have read them. DDD has even decided to distribute them to all DDD staff. They are also now available on the Coalition’s website at