Minutes – Post 21 Club General meeting 2-20-13
Special Brainstorming Session II – Design of a Day program for Adults with Autism with more challenging behaviors
Present: Larry Lam, President and Co-founder of P21, Natalie Lam, Co-founder of P21, Nancy Leeds, Treasurer of P21, Hyun Roshandel, Trustee of P21, Lee Pranitis, Secretary of P21, Ryan Roy, Meredith Poveda. Janet Belkin, Diana Chipkin, Theresa Rampino, Shauna Weinberg, Christa Orr, Beverley Chatfield, Ravid Yedidia. O. Cabrera
As discussed at the last meeting, we invited Mala Spivak, Clinical Director of NJ Friendship House and Executive Director of the FHAADP to meet with our group to review what is already being done in the current day program and to address questions of the parents. She also reviewed that the current program already deals with most types of challenging behaviors already. The staff is trained to deal with Crisis management and receives regular training in ABA methods. The current staffing is 3:1 (participants: staff member). What they need is additional staffing – in some cases a 1:1 staffing is necessary – to handle behaviors which prove to be a danger to the participant themselves or the people around them. See discussion of 1:1 staffing below.
We first reviewed the wants and needs of the families that were articulated at our last meeting, and Mala addressed these. See Mala’s comments as the bold italicized wording after each entry below:
Needs and Wants reviewed at 1-31-13 meeting (and Mala’s comments tonight):
1) More experienced staff to handle and defuse challenging behaviors – having Behaviorist on site every day or on most days of the week: * Current staff member, Mandy, is nearing completion of her BCBA so we are soon to have a certified Behaviorist on site every day*
2) Program individualized for each member: * already being done*
3) Higher staff to member ratio; 1:1 staffing if necessary: * some families already have one-to-one assistants (up until now, and depending on the situation, DDD may allow for a 1:1 for several months; in one case a member’s family obtained the 1:1 for 7 months). If there are established behavioral issues, families applying to get into the program now should come in with a higher budget from DDD. Since Medicaid is now the gateway to services from DDD, a “medical component” should be applied for when arranging for these services; parents should emphasize the “safety needs” of their situation. If granted, the medical component would allow for a trained 1:1 for whatever the need is (behavioral/safety, medical, etc.). Based on program costs noted from other Day programs, it is estimated that the budget for a “medical component model” is ~ $30K.*
4) Not necessarily a separate program from the existing one – allow integration of all members: Mala believes that it is not necessary to have a separate program; may need a separate space to instruct a group with more similar needs, but socialization time should be for integration of all members. The current program has groups A and B – one group has more learning/behavioral issues. Each group learns from the other, and helps each other, so integration time is most important. The current program also shows social videos to all members so as to teach proper behavior and socialization*
5) Longer program hours; participation after 3 PM with more recreational components: As stated above, since Medicaid is the gateway to services for DDD, the rules now state that there are separate “pools of $$” for given services. There are $$ for “day treatment”, and $$ for “support programs”. Support programs would cover activities for “after-program” time like recreational, employment services, etc. Mala would like to obtain Support Program $$ so as to start an “After-day program” Program at the FH Hackensack site from 4 – 7 PM. Here she could create additional e.g., recreational supports, more socialization time, and teaching cooking skills which would lead to more socialization activities (sharing a meal, etc.). At present, the restrictions for this type of “Support Program” have not been outlined. Mala is hopeful that as more “layers” of DDD are removed (e.g., Neighbors, Inc., Easter Seals, etc.) there will be more available $$ for the programs we need.
6) Conversational speech training under the guidance of a SLP; modeling of correct and appropriate conversational speech: * Mala is not committed to adding speech therapy services for the proposed “after Program” program at present – she needs to review what the greatest needs of the participants are and incorporate help for these. Speech services may be available through “Support programs” outside of FH if need be. *
7) Lot of structure – ABA-based training; i.e., proper teaching and modeling of appropriate social skills in the community. E.g., teaching appropriate social skills in a restaurant; using “small plate diet” to teach appropriate eating skills/behavior: *already being done*
8) Socialization and social skills training with individuals who are more social but not with ASD – e.g., having staff directed socialization with properly behaved young adults with Down’s syndrome: * see above; as stated, Mala agrees that additional social skills training can be done but she feels that typical peers might make for better roles models*
9) Having daily physical activity and proper sensory input – e.g., having a gym with proper equipment, dance classes, outdoor walking, fitness training, etc.: (note: walking program already done in current FH program): Ryan noted that he would like to see more programs like Yoga, Aerobics, and Tai Chi incorporated in the current program. Mala agrees and would like to reach out to a local gm to do this for the participants. She has also applied for a grant to do a trial Movement/Mosaic class with “MarbleJam” in Tenafly, however it looks like this grant will not be obtained. She will continue to work on this component.
10) Art and music activities: (Note: Arts and crafts – making bracelets, key chains, etc. for sale is already done in current FH program) already being done
11) Playing Board games: *Already being done*
12) Use of computers and IPads for educational and appropriate recreational activities: *already being done*
13) Transportation to and from the day program: *Already being done for most members. New members coming in do not appear to have this service from BC Transportation. Once we relocate, transportation may be easier. Not as far for BC transportation may equal more slots, we will have Access Link available to us, and with Medicaid, more people may be eligible for Logisticare transportation services. *
14) Some type of work and work training: *Already being done. Our members are currently doing internships in near-by establishments – Jewish Home, BCSS Health Care Center , T.J. Maxx, K-Mart, IronHorse Restaurant, etc. The current members work for 2 hrs. at a time doing internship and this is done 2 – 4 days a week depending on the member. The members also practice working on socialization skills in the community; they also do walking, shopping in the community, etc.*
15) A LOT of encouragement: *already being done*
16) Another issue raised by parents at this meeting is how the FHAADP deals with sexual tension of the members during the program day: * This certainly exists and one can see when one participant “likes” another. This is dealt with in a variety of ways. In general, we want to normalize what they are feeling but teach appropriate behaviors/responses. As an example, Staff might respond with “not now” for this type of behavior, but the key is that the Staff redirect, reinforce and role play appropriate behaviors. We are beginning a group that deals with these behaviors specifically.*
What the families don’t want:
1) Giving criticism to our kids/young adults – they do not handle this well and it facilitates challenging behaviors
* Our focus is on teaching desired behaviors and focusing on positive outcomes. Teach cause and effect.*
Important: Applying for the FHAADP:
As stated below, Mala needs to make sure there is space for all families that want to participate in the FHAADP. Note: come Sept. 2013 there will be 30 people a day participating in program, not necessarily all full time, however, this will bring us to full capacity.
Currently, the Essential Lifestyle Plan (ELP) is needed for Self-directed services; it is an 18 page document. Mala has an electronic version of the document and can help families fill this out properly – she understands what the questions are really asking. If families do require a 1:1 due to behavioral issues, they need to apply for the 1:1 before coming into Program. In the new DDD environment, this requires obtaining the “Medical model” through Medicaid. The request must be robust enough so that families get the additional funding they need.
Important: Regarding Program location and need for additional space:
As was just announced this week, all BCSS programs, as well as the FHAADP, must move from the Rockleigh campus by August, 2013. The County will guarantee space for up to 30 participants for the FHAADP, but presently, we do not know where this space will be located. Most likely, it will be in an existing BCSS location, in a central location; we should know this in the next few weeks. Eventually, the Program will be located in the new Paramus site once it is built (probably won’t be ready until 2015).
After Sept. 2013, the FHAADP will be at capacity with 30 full time members, and will need to find additional space for a “Satellite” of the program. Mala is currently looking for additional space – hopefully free, or at low cost.
Question: What do new participants lack in skills when they first come to Program??
It appears most participants do not have proper job readiness skills. They also seem to lack, independent thinking and choice making skills. E.g., most participants do not know the size of their own clothes or how to pick out/make choices when shopping for clothing – an exercise done in the community as part of Program. Another exercise that the FHAADP does is going to Ikea with a group of members and asking them to design a bedroom based on their preference. They need to learn how to go after the things they need and want, make choices of things available to them, and cope with the environments they need to navigate to get these things. It appears that these types of critical skills are not being taught in the schools and are being newly taught to participants now.
1) Develop survey for families so that they can express their needs for a Day Program??
2) Mala and members/staff to create a monthly Client newsletter to share what’s going on in Program with families. This would be a good activity for the members and good for the parents to receive as they expressed they would like to know more about what’s happening in Program, latest news, etc.