Frontline Initiative John F. Kennedy Jr. Tribute
One Parent's Perspective
At 2:30 a.m., in Boulevard Hospital, Woodside, New York, the obstetric doctor showed me Michael, an hour old in his small crib in the nursery and said, “Your son will be mentally retarded. Notice his features and his hands. I’m sorry.” Mike had Down syndrome. With that, our family would be changed forever. The year was 1960 and at the time our culture favored institutionalization of children like Mike.
Over the next weeks, Margie, Mike’s mother, and I were confronted with a bevy of questions, doubts, and fears about his future and that of our family — we had a 3-year-old daughter and a year-anda-half-old son (over the next several years two more boys and a girl would be born). Fortunately, things began to fall into place. After conflicting advice, including from our parents and the obstetric staff, Mike came home three weeks after his birth. Unlike some of the doctors we had contact with, his pediatrician strongly believed that he would be as easy to care for as his siblings, which turned out to be true.
Today there are a number of options for support for parents of children with disabilities that we didn’t have. Fortunately, Flower Fifth Avenue Hospital included Margie, Mike and me in a year long pilot support program for infants with mental retardation and their parents. We became acquainted with the Association for the Help of Retarded Children (AHRC), founded in New York City in 1949, which proved to be very helpful as a parent resource for information and inspiration. I joined AHRC’s board in 1966, was its president from 1974 to1977, and am still an involved board member.
Mike grew and prospered, principally due to a large extended family and friends and the excellent special education programs of the city’s public schools.
In the mid 1970’s there was a radical change in New York in the care of persons with mental retardation and developmental disabilities (MR/DD). Geraldo Rivera’s expose on local ABC TV of the deplorable conditions in the state run Willowbrook Residential Facility led to a court action. The resulting Willowbrook Consent Decree required New York State to establish comprehensive community based programs for persons with MR/DD. A whole new industry gradually began to grow.
By the mid 1980’s, community programs (residential, day treatment, workshop, recreation, and health) had reached a critical mass. Even then the workforce was plagued with high turnover, low pay, and under-preparedness. These needs were first identified by the top staff at AHRC. A big issue was how to create meaningful career paths for those who wanted to stay in the field.
In 1989, Mike Goldfarb, AHRC’s Executive Director, and his colleague Dr. Jack Gorelick asked me, in my capacity as chairman of the City University of New York’s (CUNY) Board of Trustees, if CUNY and its network of 20 colleges might undertake an effort to educate and train Direct Support Professionals (DSP) in the MR/DD field. Through Jeff Sachs, a former Health Policy Administrator and guru for New York Governors Carey and Cuomo, and a good friend, we approached John F. Kennedy, Jr. with the problem. Out of numerous discussions and independent analysis by John, the Kennedy Fellows program and Consortium for the Study of Disabilities was established at CUNY, and simultaneously, Reaching Up Inc. was founded.
John F. Kennedy, Jr.’s intervention and creativity substantially increased the quality of care for persons with MR/DD and other disabilities. By making available low cost quality higher education, he empowered thousands of DSPs to pursue career paths that are well paying, challenging and rewarding.
In one example, a woman who worked as an entry level worker in my son’s residence, and would not have had the opportunity to go to college otherwise, has completed over 95 credits of the 120 needed for a bachelor’s degree in six years as a Kennedy Fellow. She is now a manager in another AHRC residence making a middle-class salary and with further opportunities ahead.
John Kennedy and CUNY wisely invested in the DSPs. As a parent, I know there is no one more important in helping my son and others like him on a day-to-day basis than the DSPs.