FRA Yesterday and Today
By Nancy Phalanukorn
The Year was 1979…
The Goal—To be responsive and fill in the gaps of services in our community by
developing programs with guidance from the families in need of the services...
Cheryl Gaudette, Susan Levine and Nancy Phalanukorn founded FRA along with Sandi
Spector, nurse and developmental specialist, and Hilda Pearson, administrative
secretary extraordinaire! Thirty families joined the work groups to define our
program and services. A Parent Advisory Board was established. It was radical
thinking at the time to have parents evaluate our programs and make suggestions
for improvement!
Program Firsts...
Home-Based Therapy—Not only was it unheard of but it was frowned upon and
believed to be unproductive.
Groups for Infants, Toddlers and Siblings—Only a handful of preschools were
available and most children were not accepted into public schools until closer
to age 7 years old. No recreation programs were available in the community, nor
any summer programs. With Nancy as head teacher, our original groups at the YMCA
included an infant group, toddler group, preschool readiness group, toddler gym
and ongoing sibling groups.
Dance, Toddler Gym, Recreation and Summer Programs—By the spring of 1981, Carole
Ehlinger had the beginnings of her award winning dance program for the children,
“Our Chance to Dance”, which evolved with Cheryl’s Toddler Gym. We also
initiated the first summer program, which for the first 15 years had lines out
the door for sign up and a waiting list of near 30 children every year. It was
THE ONLY summer program for children 3 – 8 years old for almost 10 years! We
also started our Saturday recreation program—a three hour program for children
with significant multiple disabilities.
Down Syndrome Support Group—Sue started the first support group for families
with children with Down syndrome and workshops on toilet training and behavior
training for parents. Our first major conference on Down syndrome was held.
Lending Libraries of Books, Specialty Toys and Equipment—FRA created the first
large book library specifically on topics related to children with disabilities,
parenting and family issues. Also established were a special toy lending library
and a lending library of specialty devices.
Other Achievements…
In our first five years we wrote and had published three books, created a
comprehensive infant scale of development; and developed one of the first
screening tools to identify young children with learning disabilities, working
with Janis Bell and the AAUW. Sue Levine wrote the first Sibling Newsletter –
which continues today as only one of less than 20 in the country! Sue also wrote
a manual for developing sibling groups. A grant with the March Of Dimes allowed
FRA to do the very first babysitter training program that trained teens and
adults to work with children who have special needs.
By the mid 1980’s we worked with Ray Waters (Tara’s dad) to set up “SNIP” – the
Special Needs Infant Project, which combined his strong efforts and Nancy’s work
with the state Public Advocate’s office to press for legislation for free
education for all infants with disabilities. This passed, with funding!, and
became the foundation of today’s laws. We then received training from the Public
Advocate’s Office and were some of the few educational advocates to train local
professionals and schools in the laws. Our training workshops were the best
around – creating parents who were clear in their needs and articulate with how
to get proper services. These parents helped make the changes in school services
for preschoolers and introduced the ideas of inclusion for the children in all
educational and community activities that we see today.
In 1986 our first computer services were offered with just two computers. Bell
Labs engineers helped to write and develop special programs for the children. We
were fortunate to have Nancy and Marcia David who made computer learning fun and
possible on a regular basis. By the end of the 1980’s, FRA was selected as the
first Alliance for Technology Access program in the tri-State area. Joanne
Castellano was hired and the TECHConnection was launched!
After so many new ideas and programs in our first 10 years, our technology
services at FRA were a tremendous leap into the future to help the youngsters we
serve by leveling the playing field and offering so many opportunities. Of
course, we soon realized the far reaching potential for all people with
disabilities of all ages. Initially, seeing the many possibilities, we were
fortunate to have the skills and expertise of the AT&T Pioneers who put our
ideas into customized software programs for individual children and for us.
Today with so much readily available “off the shelf” we no longer need to
customize.
By 1990 we expanded our space and moved up to the second floor, adding a lift as
well. Therapy rooms, computer lab and a staff room were added. We could now
provide services for adults with various medical and physical challenges, using
our vast amount of materials, including adapted environmental controls. After
school programs, Open Access time for any visitor and many programs for toddlers
were available. During the 90’s we also started our Technology Lending Library
of toys, switches, software and communication devices. Volunteers on our Tech
Advisory Board saw a need to provide computers to people with disabilities who
could not otherwise afford them and so started our Computer Donation Program. By
1997 we further expanded to include our own technology workshop and we added a
conference room, internet training room and an office for the TECHConnection
staff. Today three weekly volunteers refurbish computers for over 40 people a
year.
We began to get calls from senior citizen residences and group homes.
TECHConnection then started to offer them assistance to set up their own
computer labs. Individual student evaluations for assistive technology continued
to grow, as we worked more closely with schools. As a certified provider for
CEUs (Continuing Education Units) we developed more professional training
workshops. Today we still offer most of these services as well as summer
programs, Saturday computer learning programs for teens and young adults and
specialty workshops for parents and individuals.
Our recreation services also developed and changed over the years. “Our Chance
To Dance” expanded to include young adults. Music programs, taekwando, drama
class and Saturday recreation groups were offered. In 2002 finally “Our Chance
to Dance” and Carole Ehlinger received the state award from the Commission on
Recreation for People with Disabilities - Distinguished Joyce Indik Cultural
Arts Award for best recreational service in NJ! LEAP, our summer program became
Colleen’s Summer Place and the Barry Bike–a-thon was held for 10 years to
support this program and to make our backyard a playground.
Family Support Services grew also in response to changing needs. New programs
were started for families with multiple children (twins, triplets, etc.); with
preemies; and with multiple impairments. Mom’s Night Out – a family social
group, Mom’s Walk and Talk, and ongoing specialty support groups for families
with children having unique needs helped many families. Grandparent groups have
continued periodically. However, sibling groups expanded to include older teens
and young adults who were interested in service. And, Teen Talk, Young Adult
Conversations (YAC) and Forever Friends programs started to address the needs of
our population as they matured.
With limited preschool services available in the early 1990’s we started a three
days a week program for preschoolers with learning disabilities – My Own Pace,
which was a successful program that ran for three years and addressed the needs
of children who had visual and auditory processing issues- at a time when this
was not usually addressed. Today, the TECHConnection offers a very successful
language and reading training program on the computer for 6 – 10 weeks on Fast
ForWord, which addresses many issues of learning and language disabilities. Now
we are looking at the needs of youngsters with PDD, autism and other issues to
develop special programs to address their needs.
Infant Intervention Program services are always changing! From the 30 infants we
served annually in 1992 we have now grown to service 220 infants a year –
visiting almost 100 children weekly! During this time we have provided up to 6
hours a week for all children in a combination of group and individual services;
then state/federal regulations insisted that only center-based services were
allowable up to four hours a week to now only home-based services are allowable
and for only 2 hours a week. And we are currently in another period of change
with many programs using individual consultants to deliver infant service! While
we have always offered both settings, we now see that families no longer value
group programs and despite our offerings, groups are not well attended.
Early on, FRA made an additional effort to have youngsters in inclusive
settings. We started group services held at McDonalds and at Gymboree.
Individual services have been held in parks, shopping malls, Monmouth Museum at
Brookdale, Imagine That!, the beach, and boardwalk and any other place that
children gather. Being committed to best practices and having experienced all
types of services, we believe that our earlier model of both group and
individual services with a full transdisciplinary team allows for greater growth
for the child and the family and it better educates staff for this critically
important field. But we will see what another 25 years of change brings!
Family Resource Associates has a tremendous history of responsive services to
fill in the gaps of service needs, and of growth. But most important to us is in
assuring families of our high quality standards of service, listening to the
needs of those we wish to help and providing professionals who are experienced
and caring. Of the five professionals who started FRA, the three of us are still
on the job (Nancy, Sue and Cheryl). But also important is that we have 13
wonderful staff members who are with us for the long run! They are: Carole
Ehlinger- 24 years; Kerry Albanowitz- 18 years; Roni Vandermark- 16 years;
Joanne Castellano-14 years; Barbara Stevens – 13 years; Ann Martinelli - 12
years; Penny Sanservino – 10 years; Dee Hoban and Fayth Newell- 8 years, Pauline
Goebal- 7 years; Susan Conley - 6 years, Susan Hoff and Jill Wells – five years.
Starting with only 7 staff in 1979, we now have 36 regular staff members! All
who are outstanding and we are so proud to have them with us!
In our effort to continually share our knowledge and to educate others, FRA has
reached out to others in various ways. FRA remained active as educational
advocates helping families through the system with workshops and individual
support at meetings and SPAN was housed at FRA for two years. We remained on
state and local committees to develop NJ laws affecting infant intervention and
educational services, and we have currently been involved in the writing of
state guidelines for other therapists and educators. We have student therapy
interns; we have provided four tri-state area conferences on Down syndrome;
numerous professional in-service training and workshops on many topics; our
sibling program is recognized nationally as is the TECHConnection, both of which
have been invited to present at state and national conferences; we have written
and published three books; developed two developmental testing programs; written
booklets about siblings; and we now offer five different newsletters: FRA News,
TECHWatch, For Siblings Only, Sibling Forum and our newest one Down Syndrome
News.
Many terrific individuals have touched us in these twenty-five years. We are so
very proud of the accomplishments made by so many of the parents, youngsters,
young adults and adults who have come through the doors of FRA. Each person has
changed us in some way for the better- and in some way they have shaped and
brought about changes in the health, education, employment and social services
systems.
We hope FRA will always be there in a way to promote change, celebrate
differences, encourage acceptance and independence, rejoice in progress big and
small, and look to the future with optimism. We are proud of our role in helping
thousands of people with disabilities achieve their best as well as our role in
supporting families to learn how to make their way through various systems and
to make a mark in uncharted territory.