“I’d like to introduce myself…”  (page 2)
Newly elected President, Al Agovino, introduces himself to the AHRC membership and readers of the Chronicle.

Feature Article - Choice and Responsibility: the Right to Make Choices, the Dignity of Risk and the Ensuing Issues (pages 2- 5).
At the heart of  “person-centered planning” – the newest philosophy and policy directing the redesign of services in the field of developmental disabilities – is the increased emphasis on consumer choice and empowerment. Consumers want change. They want to make decisions about their lives. They want the right to make choices and take risks. For example, they want to make decisions about where they live and whom they live with, where they work, what they do in their leisure time, who they have relationships with and how they spend the money they earn. The “new” values are inclusion, independence, individuality and productivity.

Replacing a long history of often paternalistic decision-making, this new emphasis brings with it the need for families, professionals and policy makers to wrestle with issues of responsibility and protection. In and of itself this change in focus is a radical departure from what has existed up until now. It has put into question the roles and responsibilities of the servers and those served. It has raised questions about the kinds of services provided and the way they are provided. It has raised questions about the role of government in monitoring and regulating quality. It has raised questions about how people with mental retardation actually function in the real world and how they can be assisted in overcoming real obstacles. And it has raised questions about who is responsible when the choices that are made lead to outcomes that are not desirable, or cause harm to the individual.

The answers to these questions are far from simple. There are many different opinions (some strongly held) and there are many things to be considered when examining policy and practice. What follows are a sampling of thoughts about choice and responsibility written by well-respected and prominent professionals in the field of developmental disabilities – a small cross section of thoughts on different aspects of the subject. Michael Goldfarb, AHRC’s Executive Director, addresses the issue of ensuring quality of life for people with developmental disabilities through government regulation. John Rose of the Irwin Siegel Agency discusses the new challenges self-determination brings to professionals. Dr. Stephen Greenspan writes about the vulnerability of people with mental retardation in certain contexts and the need to consider these vulnerabilities in addition to stressing their strengths. And, Dr. David Goode of the City University of New York speaks to the need for people with developmental disabilities to have more control over their lives, but adds that we, the people who care for them, will, when needed continue to protect them.     

Programs, Services and Supports (pages 6-11)
Provides updates and new information on services currently provided by AHRC. Highlights written about are AHRC’s new medical clinic and Michael Rothstein, a nurse practitioner for all seasons; adaptive technology being utilized in AHRC residences; service coordination as the making of small miracles; and AHRC’s Families and Advocates for Children’s Services (FACS).

Meyer Schreiber: Pioneer in Sibling Activity and Mental Retardation to Donate His Sibling Archives to AHRC (page 11)
Dr. Meyer Schreiber, a pioneer in the field of mental retardation and sibling services, donates his extensive one of-a-kind archive on siblings to AHRC.

Reviews: Books for Children, Books for Adults, and a Film  (pages 12-13)
A number of books written for children in the attempt to help them understand and accept their peers with special needs are reviewed. Jewel, by Bret Lott, a novel describing the life-long relationship between a mother and her child with a disability is reviewed.  The book is described as being poignant in its attempt to show a mother’s struggle, love and commitment not only to her daughter with a disability but also to her entire family.  The Eighth Day, a film directed by Jaco Van Dormael in French with subtitles, stars a remarkable French actor, Pascal Duquenne who has Down syndrome. Although the film may seem a bit clichéd, the story is actually very touching and sheds some light on the frustrations of living with Down syndrome.

Centerfold (pages 14-15)
A photo journal of AHRC’s 50^th Anniversary Hall of Honor. The following people were honored for the role they have played in the Association’s history as well as the history of the field of mental retardation in general: Ann Greenberg, AHRC founder; George Hirsch, Board member for 50 years; Dr. Margaret Giannini, physician who created a new field of medicine; Jack Gorelick, pioneer in the field of mental retardation at AHRC; Governor Hugh Carey, who signed the Willowbrook Consent Judgment; Barbara Walters, a media celebrity who has been part of the AHRC family for thirty years; John Cardinal O’Connor, a strong fellow advocate for the disabled; Arnold Diaz, investigative reported for 20/20 and emcee of the AHRC annual dinner for decades;  Stephen B. Siegel,  Chairman and CEO of Insignia\ESG, Inc., who has assisted AHRC in raising money in the real estate industry for the last 20 years; Chris Burke, the well known actor with Down syndrome who is a celebrity at AHRC; Dan Scannell, First Vice Chairman at the MTA who assisted in the AHRC/MTA ad campaign; Thomas Maul, Commissioner of New York State OMRDD; and Michael Goldfarb, AHRC Executive Director.

Legislation and Entitlements (page 16 and 17)
Go to Today's Legislative Issues page of this website for a synopsis of relevant issues. 

AHRC Happenings (pages 18-25)
Reports on a variety of AHRC events including the 11^th annual legislative breakfast, Discovering Ability in Disability, an employer forum held at Barnes & Noble, the AHRC 50^th Anniversary Dinner gala, the AHRC/CUNY Symposium sponsored in honor of AHRC’s 50^th anniversary. AHRC welcomes its new President, Al Agovino and new Board members, Dr. Doris Wethers and Ms. Vaulda Kendall-Browne. And AHRC says farewell to Anne Kraus, former Board member and President of the organization and staff member of long years.

Accessing Information and Services (page 26-17)
A resource for parents, professionals and consumers that lists new sources of information as well as providers of services.

Back-page Story (page 28)
“A Day At Shea” is a heartwarming piece that describes an outing to Shea Stadium and the amazing reception given three AHRC program participants by  Mike Piazza, Rick Reed and Robin Ventura of the New York Mets.

to top

Winter 1998 - Abstracts

"Trying to put what research has taught us into practice. . ." (page 2) -- In addition to being the largest provider of services and supports to people with developmental disabilities in New York City, AHRC was a trailblazer in creating the service options currently available. Marilyn Jaffe-Ruiz, President, speaks on the tremendous strides that have changed the quality of life for so many people with developmental disabilities. To continue to meet the unmet needs of our consumers, AHRC must continue to assess and improve our programs. One of the ways we have always done this is by incorporating the best insights emerging from recent research in the field of developmental disabilities. 

"The value of our achievements, rather than our regrets, will drive the Association. . ." (page 2) As AHRC approaches its fiftieth anniversary, Michael Goldfarb, Executive Director, reports on the state of the agency and reaffirms the convictions by which the agency has always been driven. He observes: "`Leave your personal problems at the door, so that we may create a new world for many people with disabilities' is the theme which permeates our history. Use the difficulties that you face as a spur to great ideas and good deeds, rather than as a source of dissatisfaction. The motivation which drives us is the essential bond between difficulty and creativity, between burden and freedom." 

Feature Article -- "Early Intervention Services for Infants and Toddlers with Developmental Delays: What was. What is. What will be." (pages 3,4,10, and 11) -- Not too many years ago, when a mother complained to a pediatrician that her child did not seem to be developing normally -- the child wasn't rolling over, or standing, or walking, or talking when he was supposed to -- unless there was a known physiological diagnosis and a resulting possibility of delayed development, the doctor would frequently say, "be patient. . .he or she will catch up." But in the last decade, the vulnerability of young children with actual developmental delays and those at risk for delays has been recognized, and parents and professionals are far more attentive to developmental problems and to the value of early intervention services. Today, when a pediatrician is told by a parent, or suspects, that a child is delayed, that child is often promptly referred for a developmental evaluation. And if delayed development is confirmed, there are a number of early intervention options available to assist that child and his/her family. Additionally, diagnostic techniques are far more sophisticated than they once were and more accurate differential diagnoses can help to determine the best course of action to be taken.

This article discusses the history of service provision to young children, eligibility guidelines and the nature of early intervention programs. Perhaps most importantly, it discusses current research on program effectiveness, directions for future research and applications. Questions for future research include: what are the specific program features that are associated with optimal outcomes for children and families? Are there critical periods in which intervention is most effective? Can the well documented short-term benefits of early intervention be translated into long-term gains, extending over various transition points in a child’s life? AHRC early intervention success studies are included. 

AHRC Programs, Services and Supports (pages 5-8) -- An update on new programs, services and supports offered by AHRC New York City, including Home Health Care Services. (See Home Care Services page of this website for information.) 

Book Reviews (page 9) -- The Child Who Never Grew, by Pearl S. Buck. Life As We Know It, by Michael Bérubé. The Eyes of Raymond Hu, paintings by Raymond Hu. Bus Girl, by Gretchen Josephson. 

News in the Field (page 11) -- Dr. Harriet Golden, Assistant Director of AHRC's Department of Adult Day Services, discusses the importance of differential diagnosis for adults. It is hoped that if a differential diagnosis is made in childhood, the prognosis for those adults to be served in the future will be improved. Golden writes, "It is time to embrace biological information and developmental knowledge. This will allow professionals to focus training on the areas in which those served can best respond." Dr. Golden's examples illustrate the importance of determining the etiology of a disability. 

Early Intervention Program Successes: A Photo Essay (pages 12-13) -- A personal component to the feature article. Meet five children -- each with difficulties that, until recently could not have been adequately identified and addressed by an early childhood program -- and witness their triumphs at AHRC's Bronx Blue Feather Early Intervention Program. 

Legislation and Entitlements (pages 14,15, and 23) -- Go to Today's Legislative Issues page of this website for a synopsis of relevant issues. 

Happenings (pages 16-21) -- Reports on the last season's celebrations, events and ceremonies, including: the 1997 AHRC NYC Olympics; the NYSARC Business Awards ceremony (at which New York's Animal General was honored for its exceptional relationship with the HIRE participants who work there); the Best Buddies Eastern Regional Office setting up shop at AHRC; The Third Annual AHRC Golf Classic; Mary Mohan's appearance in a televised public service announcement sponsored by the President's Initiative on Race (Mohan is a resident at AHRC's Cunningham League IRA); the Young Leadership benefit at Naked Lunch; Prudencio Aloyo's one man show at the Brooklyn Transit Museum (Aloyo is a program participant at the New York League Work Center); The sale of scarves and ties designed by Tanya Coppedge, a program participant at the New York League, to benefit AHRC; The Fourth Annual Mental Hygiene Awards Ceremony, presented by the New York City Department of Mental Health, Mental Retardation and Alcoholism Services, at which AHRC was honored for its contributions; The Comedy Nation/Lion King benefit; A new pooled income fund established to benefit the AHRC NYC Foundation and donors; The HIRE/CAREERS Customer Appreciation Event; The Thanksgiving presentation at AHRC's Cyril Weinberg Adult Day Center; and the Twenty-Fourth Annual AHRC Recreation Dinner Dance.

Accessing Information and Services (pages 22-23) -- A resource for individuals with developmental disabilities, for the people who care for them and for professionals.

Eulogy for Janet Horowitz (back cover) -- An address written by Michael Goldfarb, Executive Director  AHRC, and delivered at the funeral of Janet Horowitz, a much beloved program participant, co-worker and friend.