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Westchester Arc
The Gleeson-Israel Gateway Center
265 Saw Mill River Road
Hawthorne, NY 10532
914.949.9300
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Family Resource Day Attracts Hundreds
Three hundred family members and social service professionals heard practical answers to hard questions during Westchester Arc’s Family Resource Day on February 10 at White Plains High School. Workshops and a resource fair addressed a broad range of issues confronting concerned families.
Sometimes-contentious sessions simulating meetings with grade and high school Committees on Special Education (CSEs) captured the real-life conflicts that can accompany creation of special needs education plans. The implications of increased life expectancies for people with developmental disabilities, guardianship legalities and financial planning were also examined in detail.
Over 20 community organizations and service providers participated in a resource fair providing a wide array of information. Participants ranged from experts in healthcare, law and financial planning to representatives from advocacy groups and state agencies.
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The event’s resource fair provided an opportunity for families to share personal stories, network with social service professionals and learn about educational advocacy, financial planning and recreational programs.
Attorney Jill Faber fielded questions about families’ rights within the public school system.
Parents vs. Schools
A recent Supreme Court decision places the burden of proof on families during special education due process hearings. The day’s CSE simulations were designed to improve the odds against parents having to take that contentious step. One workshop examined a situation involving a boy on the PDD spectrum preparing to move from pre-school to kindergarten. The panel stressed that evaluation data—not categorizations—shapes a child’s education plan and that the school district is legally required to provide an “appropriate,” rather than the “best,” plan. Typical concerns relating to inclusion vs. self-contained classes, availability of one-to-one supports and exposure to student peers who will create a stimulating learning environment were discussed.
A panel comprised of special education professionals and parents advised moms and dads on effectively advocating for their children.
A high school CSE simulation focused on a scenario involving an 18-year-old who does not plan to attend college and requires vocational skills training. Panelists stressed the importance of preparation and of investigating ahead of time whether or not school district representatives will be in agreement with specific parent requests.
Student Ruthie Carroll, shown above with her mother, Bernadette, urged parents to let their children grow up. “I may need some help, but I’m an adult and I enjoy my independence,” she said.
“Put everything in writing ahead of time,” advised educational advocacy attorney Sheryl Frishman. “Think of this as a business meeting and come with an agenda and recommendations. The school district will probably appreciate how prepared you are.”
“Think of this as a negotiation but try to be collegial,” stressed teacher Janet Abinanti. “Approach this important meeting thinking ‘What can we do together to help my child?'”
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A fun-filled childcare room offered arts and crafts, an inflatable party jumper and live music.
Guardianship and Aging
A workshop on guardianship was conducted by attorneys specializing in disability issues, including Joseph Accetta of the Westchester County Surrogate’s Court. Unless legal action is taken, an individual with developmental disabilities is assumed competent to make his/her own decisions at the age of 18.
Joseph Accetta, an attorney with Westchester County Surrogate’s Court, counseled families on issues relating to guardianship.
Panelists suggested that, in most cases, it is advisable to begin guardianship paperwork about six months before an individual’s 18th birtday. Healthcare decision-making was a special concern, and participants were discouraged from establishing dual standby guardianship for siblings to avoid possible conflict at critical times.
Gerontologist Lawrence P. Force, Ph.D., spoke about the implications of longer lives for people with developmental disabilities. In the early 20th century, for instance, individuals with Down syndrome had a life expectancy of nine, but improvements in healthcare mean that they may now outlive their parents. Aging patterns mean that the longest relationship that an individual is likely to have is with a sister.
Gerontologist Lawrence P. Force, Ph.D., facilitated a workshop exploring the relationship between older parents and their middle-aged children with special needs.
Dr. Force stressed that people over 60 with developmental disabilities are entitled to services under the Older Americans Act and that a commitment to inclusion should extend to their being served alongside the rest of the aging population.
He also pointed out that parents of people with developmental disabilities tend to live longer because they are more needed by their offspring and that they often have more to talk about than typical parents and children.
Financial Planning
The day ended with advice from a well-received panel of special needs planners. Attorney Frances Pantaleo began the session with an overview of public programs designed to provide assistance to persons with disabilities, including Social Security Disability, SSI (Supplemental Security Income), Medicaid and Medicare.
Attorney Frances Pantaleo educated families about available public assistance programs for individuals with developmental disabilities.
Attorney Bernard Krooks told a moving story about twins with disabilities whose parents died, unexpectedly, in their thirties, leaving them with an unprotected estate that disqualified them for publicly-funded programs. Paul Katz, of MetLife, counseled attendees to talk to family and friends about the importance of coordinating financial gifts and inheritances to people with disabilities. “A wise alternative is to create a supplemental needs trust that will allow them to continue receiving Medicaid and other public supports.”
“There’s a lot of fear about what will happen when a parent dies,” noted attorney Sheryl Frishman. “A letter of intent is a critical guide to those who will be caring for your child when you aren’t here. In fact, having a potential guardian review the letter is a good way to ensure that you’re choosing the right person for the job.” Speakers pointed out that such a letter is especially important when an individual is non-verbal. It can cover anything from eating preferences to dentists to what upsets a child.
A panel of special needs planners mapped out strategies for estate planning and guardianship.
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