by Gretchen C. Van Benthuysen
Nearly 30 years ago Maire Merritt gave birth to her second daughter, Eileen, who has Down syndrome.
“I knew nothing about Down syndrome or cognitive development (the ability to think and understand),” said Merritt, a retired high school teacher. “I had no background in the area.”
But a friend of his knew Sue Levine, the program administrator and a founder of Family Resource Associates (FRA), a nonprofit agency based in Shrewsbury dedicated to helping people with disabilities reach their full potential and independence through therapy, technology and education, while also supporting their families.
“Sue came to the hospital and offered to help me in any way she could,” Merritt said. “For parents of newborns, this is a frightening experience. You feel isolated. Sue proved to be invaluable to me and a tremendous resource over the years.”
Executive director Nancy Phalanukorn also is one of the original five professional women along with a group of 30 parents who founded FRA in 1979. They were frustrated by bureaucratic inertia and lack of services for pre-school children with disabilities, especially children age three and younger.
“One area we specialize in is caring for infants,” she explained. “But what happens after age three and before they enter public school? Those kids were just sitting at home.”
Growing and changing to meet the needs of a growing and changing population of chil- dren and adults with special needs became FRA’s mission.
“We started with 30 kids with Down syndrome and genetic disabilities,” Phalanukorn said. “The second year we had a boy with autism. Now we serve 150 infants a week and of those 30 are on the autism spectrum.”
FRA has an annual budget of $1.6 million with a relative- ly small administrative staf f of seven, Phalanukorn said, with 92 percent of the budget spent on programming. The infant program, which includes home visits, has a staff of 38 professionals and 15 people teach the adult classes. Volunteers donate about 8,000 hours per year and that includes a tech team that refurbishes donated personal computers to give to needy families. Annual fundraisers include a golf outing and a gala dinner-dance. “It’s always a balance of donations, fundraising, grant writing and fees,” Phalanukorn said. “And we have an extremely active board of trustees that help us grow and meet the needs of students and families.”
FRA’s adult services also have grown with facilities in Eatontown and Brick featuring studio apartments for independent living and life skills classes such as preparing meals using a microwave and toaster oven and maintaining personal living space.
Designed like 12-week college semesters, classes are offered twice daily with 10 to 14 students per class. For ty topics are available, including money skills, nutrition and hygiene, how to look your best, getting ready for a job inter view, self-advocacy and self-expression, current events, as well as fun classes such as yoga, dance and karate.
One service Phalanukorn said FRA is very proud of is the TECH Connection, a computer lab with 20 stations open to the public and designed to make technology more accessible to people with limitations due to accident, illness or aging.
People with special needs can sample specialized soft- ware and adapted devices before making a purchase. Assistive technology training for professionals and thera- pist is available as is a lending library for special needs people who may borrow more than 450 assistive devices and specialty software.
FRA’s focus is not entirely on the disabled child or adult. Family support includes individual counseling, workshops, monthly meetings for siblings ages 4 to 9 and 10 to 15, plus monthly meetings of Moms of Young Children with Down syndrome and Parents of Children with Multiple Impairments.
Maire Merritt said she had her husband Bill learned more from other parents than they ever learned from books.
“We went to several parent workshops held at FRA to become informed parents and knowledgeable advocates for our children,” she said. “FRA also helped us to see the whole child and not just the disability. They guided us.”
Eileen Merritt will celebrate her 30th birthday on Jan. 30. She graduated from Old Bridge High School, attended four different proms, is still friends with people she met in grammar school, volunteers in the children’s section at the Eastern Branch of the Monmouth County Library system, plays golf, and participates in the Special Olympics New Jersey in sailing and earned medals in rhythmic gymnastics. She serves as an FRA ambassador making public appearances. She also has a boyfriend. And that’s the short list of her accomplishments.
