Minutes – Post 21 General Meeting – 6-26-12

Present: L. Lam, B. Johansen, S. Force, C. Orr, J. Belken, L. Gruppuso, N. Aronovits, M. Vinci, H. Roshandel, J. Weiss, L. Pranitis

 

1) Welcome new members – their stories and concerns

We welcomed some new members to our meeting and invited them to share their personal stores with us:

 

One of our new families has a son who will be 22 in July and has recently gone through the DDD Transition Assessment phone questionnaire that determines budget for post 21 life (note: the DDD has contracted with NJIT to run these phone assessments).  When discussing your child’s abilities, it is important to be honest and answer thinking that your child is being compared with a neuro-typical peer. E.g.,  if your child will only get dressed if you tell him, or if you point to the picture cues, or if you pick out his clothes, or physically help him dress, then he/she is NOT independent in getting dressed.  If you say he ”sometimes gets dressed on his own” (but truly needs certain supports) then the NJIT assessment may view it as "independent", and your level of funding/support may not meet your needs.

 

We also learned that for this family, they are eligible for Medicaid due to their son’s health condition. They requested a home health aide through Medicaid and the process went as follows: .  after the request was made, a nurse will come to your home and do an assessment to determine eligibility for services.  If eligible they will determine the number of hours the child can receive.  These services are completely separate from adult DDD budget whether Self Directed or not.  In addition, we learned from another family that, through Medicaid, many of our families are eligible to receive food stamps (which will affect SSI funds).

 

For information on these and related issues:

 

Hinkle, Fingles and Prior:  series of articles that are easy to understand cover a variety of topics:

http://www.hinkle1.com/pubs-and-print/

 

Wrightslaw Website:  well know advocacy resource for families

http://www.wrightslaw.com/info/advo.paperchase.crabtree.htm

 

Statewide Parent Advocacy Network (SPAN):

http://www.spannj.org/

 

Autism NJ:  Has information and workshops on IEP's, transition, advocacy etc.

http://www.autismnj.org/

 

Department of Human Services - DDD - State website

http://www.state.nj.us/humanservices/ddd/programs/pathways/

 

 

Another family has a young child who has many behavioral (including self-injurious) issues due to a medical /neurological condition on top of the ASD.  They are having a hard time getting their school district to provide the proper supports (Behaviorist, other supports, etc.) to maintain the child at home as well as in school.  One of our new families gave a lot of good advice, e.g., documenting all discussions and phone calls with either DDD or the school district, getting through to the DDD supervisor when the DDD case manager cannot be reached (simply ask for the Case manager’s supervisor when calling the general number); obtaining services of an outside Behaviorist from the agency “Above and Beyond Learning Group”; getting evaluations including those regular evaluations from your school district (to be done every 3 years – speech, augmentative, OT, PT, learning, behavioral, psychological, medical – whatever is needed), and requesting independent evaluations – paid by the school district - when one is not satisfied with the results/recommendations; using your own resources/doctors to run proper evaluations if necessary; hiring an Advocate to help fight for more services; understanding how to deal with difficult behavioral issues if needed; how to make the most of having a dual diagnosis, etc.

 

One thing that this last discussion brought to the forefront, is that many of our families with young adults age 21 and over, have difficult behavioral issues that can’t be dealt with in their own homes, in many existing day programs, residential group homes, etc.  There is a great need for interventions and specialized programs for difficult behaviors in our adults, and families need to speak out and demand such programs.

 

One family was interested in lawyers that specialize in Guardianship.  We passed on info from the law firm of Hinkel, Fingles and Prior, www.hinkle1.com.  (See also above.)  General phone number for NJ: 609-896-4200  Paramus office: 201-940-7206

 

2) Day Program Update

Larry updated the group on what the FH Adults with Autism Day Program is, and the kinds of activities the members participate in (ADL skills training, social skills training, technology training, community outings, work internships in community, etc). , The current member count is 16 members; the program is currently located on the BCSS campus in Rockleigh, NJ.  BCSS gave Post 21 Club free space on the campus for this program.  The Director, Mala Spivak told us we should be up to 21 members by Sept. 2012 – it is a fast growing program.  Mala has also said to us in the past that she is willing to create and staff a Day Program for more challenging behaviors, but she needs to know that families really need this and we would need additional space and funding for such a program.

 

3) Funding challenges

One of our families obtained Category 3 funding (Level 3 = $21,640.00) through her DDD phone assessment.  Though this is better than the standard $16, 480.00, it is still a challenge to meet all of her son’s needs.

 

4) Group Homes

Larry noted that his own son would benefit from socializing with adults his own age rather than being at home with Larry/Mom.  He encourages all those interested in securing placements in a Group Home, to contact Tom Toronto of the United Way of Bergen County (201-291-4051).  Tom is currently building residential facilities for those with a variety of special needs.

 

 

5) “After Program” Program – update

Our Board member, Nancy Leeds, has worked with Shelley Levi of the Tenafly JCC on the Palisades to write a grant proposal to Autism Speaks for an After-Program” Program at the JCC, e.g., a program that would run from 3 – 6 PM and have activities such as music and art, cooking, recreation at the gym, work training, etc.  We will not know if we obtained the grant or not until January of 2013.  In the meantime, Shelley Levi hopes to start this program in the near future; cost will be ~$40.00/day.

 

6) P21 Fundraising

P21 does several fundraisers every year:

- We do an Annual Spring Fundraiser jointly with NJ  Friendship House for the Friendship House Adults with Autism Day Program.  The fundrasier is held at the Rockleigh County Club in Rockleigh, NJ.

- Post 21 and the Leeds family also run an annual “Cook Off” fundraiser at “La Promenade” in Tenafly; this year it is planned for October.

-  Post 21 and Natalie Lam also run a Zumba fundraiser – i.e, Zumba fitness classes (which this past year ran from Sept. to May) in various sites in Bergen County.

 

One of our new members suggested that we look into the Great Lakes Scripts gift cards as a P21 Fundraiser.  The Club would sell gift cards from a variety of companies (e.g., Dunkin Donuts, StarBucks, Dave and Buster’s, ShopRite, various Gasoline vendors, etc.) and a percentage of the cost would go to P21.  Need to look into this…

 

 

Actions:

- Look into Great Lakes Scripts gift cards as a P21 Fundraiser

- Lee to contact Richie and set up “Parent-to-Parent Help page” on P21 website

- Contact P. Chieffe and invite him to next meeting to discuss Behavioral programs in NJ