THE FAMILY RESOURCE NETWORK
The Family Resource Network is highly recommended by readers of this site. Located in Oneonta, NY, the mission of the FRN is to provide support to families dealing with disabilities. They are a parent based and parent run group serving Chenango, Delaware, Otsego, Broome, Tioga, and Tompkins counties with lots of great information on parent training (this summer's newletter topic), camps, parent-to-parent suport, advocacy, books and videos. There are template letters to help you with effective advocacy. Although the group serves a diverse community of families of those with developmental, health care, and mental health needs, there is a great deal of helpful information on autism and the disorders that frequently accompany it.
The Family Resource Network Inc.
46 Oneida Street
Oneonta, N.Y. 13820
(607) 432-0001
(800) 305-8814
(607) 432-5516 (fax)
familyrn@gmail.com
www.familyrn.org
www.parenttoparentnys.org
www.ftnys.org
NATIONAL AUTISM ASSOCIATION--CORTLAND CHAPTER
Meets the first Thursday of the Month Oct, Nov & January - June. We are at AB Parker School Library, Madison St. Cortland at 7:00 We host many family fun activities and have a large lending library with over 35 books. All welcome--we have several people from Groton, Dryden & Lansing as well as Cortland County.
If you have any questions contact: Kate O'Connell - Treasurer
756-7371
National Autism Association - Cortland Chapter
PO Box 165
Cortland, NY 13045
| FREE OCCUPATIONAL THERAPY SERVICES
The Ithaca Health Alliance has joined with Ithaca College to offer the
community FREE Occupational Therapy Services. If you or anyone you know
is in need of Occupational Therapy Services, please contact the Ithaca
Free Clinic at 330.1254 to schedule an appointment on Tuesdays from 4-7pm.
What can Occupational Therapy do for you?
Occupational Therapy helps people with developmental, mental, emotional
and physical disabilities to improve their abilities to live an
independent and fulfilling lifestyle by teaching them daily living and
work skills.
Occupational Therapy can:
• develop rehabilitation programs for patients and provide ongoing
evaluations of activities and progress
• assist patients in a wide range of activities from driving a car to
daily living skills such as dressing, cooking, shopping and eating.
• training those with physical abilities to use adaptive equipment.
• help someone cope with arthritis
• help someone who has been involved in a traffic accident by developing
a rehabilitation program to help re-build lost skills
• ensure elderly people are cared for appropriately
• assist in the recovery of problematic drinking by educating on the
effects and teaching management techniques
• coach people with learning difficulties or poor social skills, e.g.
money management, social interaction
--
Betsye Caughey
Outreach Coordinator
outreach@ithacahealth.org
(607) 330-1253; fax (607) 330-1194
http://www.ithacahealth.org/
Ithaca Health Alliance
PO Box 362
Ithaca, NY 14851
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PARENTING RESOURCES
The Early Intervention Program offers a whole-family approach for dealing with a special needs child. This support makes it worthwhile to overcome all hesitation and seek early evaluation for your child's problems. At least in our experience, Early Intervention provided the most holistic approach to advice and resources we ever received. (Funding for the nurses who support families in this program has had its ups and downs, so let me know if I am out of date on this.)
For individuals between the ages of 4-21, evaluation moves to school district. If you do not have links to good family support in this time, there are a couple of good places to look. The Franziska Racker Centers have a Family Support program that can help you get oriented to resources. Also helpful may be the Family and Childrens' services at http://www.fcsith.org/index.php. Cooperative Extension offers parenting classes on a variety of topics, and The Stone Soup group has sessions of particular interest to parents of children on the autism spectrum.
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| YOUTH ADVOCACY PROGRAM (YAP)
www.yapinc.org
Peggy Thorpe of The Youth Advocacy Program is developing autism supports and services in New York State through the department of Social Services (not yet DDSO.) YAP's existing counties are:
Albany, Clinton, Essex, Jefferson, Orange, Oswego, Schenectady, Seneca, St. Lawrence, Sullivan, Tompkins, Ulster, Wayne, Warren.
What this means is that youth on the Autism spectrum that are receiving DSS services (preventive, return from residential, DSS custody) can be referred to YAP for services. Services including skill building, prevocational services, special needs community advocacy and support, planned respite, supported employment services, and family caregiver supports and services.
In addition YAP has developed an Autism Institute that travels around and trains schools, police, and communities about Autism.
YAP is looking to develop, state wide. the Self Advocates program. YAP utilizes self advocates in all of their trainings. It is established already in Pennsylvania with William Stillman's Self Advocate organization PASAC (Pennsylvania Autism Self Advocacy Coalition) www.williamstillman.com . We are just beginning in NY and need to develop these valuable resources.
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Local Research on Autism
Cornell:
Matthew Belmonte is conducting research on autism, as well as teaching classes on the subject. See his website at:
http://www.mattababy.org/~belmonte/
Ithaca College:
See the work of the Autism Advancement Team at http://www.ithaca.edu/autism/Site/Home.html
Bill Hudenko has been conducting a research program for 9-10 years with autism and their families. http://www.ithaca.edu/hs/depts/psychology/facstaff/whudenko/research/
Therapy Dogs
If you want to help your child benefit from the bond with animals, but need to start slowly, or if you can't have a pet, visits with a therapy dog can be a wonderful way to provide a gentle introduction or allay fears. The Cornell Veterinary School has an active "Cornell Companions" visitation program, which provides volunteers and friendly, well-trained dogs to visit children with disabilities. See their excellent website at: http://www.vet.cornell.edu/services/companions/
| A SPECIAL NEEDS TRUST
What happens when, in a small community like ours, a family saves so much for the uncertain future of their special needs child that the child is no longer Medicaid eligible? It means that the child is no longer eligible for some of the valuable services of the Franziska Rackers Center or other Medicaid based programs. Many of these are not available elsewhere, even for paying customers--they were provided by Medicaid or other programs. Our families have to think about not saving money in the child's name, or by placing the funds in a Special Needs Trust.
The same situation can continue after the child grows up into an adult in need of community services. The individual may be independent but with limited ability to manage money and they may need services only available through Medicaid funded programs (don't ask how this works...) New York State has provided the legislation for a Special Needs Trust to provide access to these services. With a trust, you can continue to invest money for your loved one, but the you can use the funds that for purposes that would make the individual ineligible for services under a government program. For a plain language explanation see http://www.estateandelderlaw.com/ep_pg11.htm. A local estate lawyer here in Ithaca can guide you through the process.
We have worked with Marcie Findlay, who has been a great guide. The Family Resource Network has offered talks on this topic and might also be able to help with referrals.
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