The prospect of adulthood is particularly complex for individuals affected by developmental disability, their families, and the people who care about them. Like their peers, they have accumulated two decades’ worth of experiences, their bodies have matured; and they are considered to be autonomous citizens with rights and responsibilities governed by the law of the land. Unlike their peers, they have not outgrown significant reliance on others to navigate the demands of adult independence – accessing health care, productive engagement and gainful employment, money management, self-direction – due to a host of limitations that impact the ability to take care of oneself.
Today’s adult service delivery system for people with developmental disabilities strives to honor their status as full-fledged citizens who have reached the age of majority. They are “grown-ups” who want to make lifestyle choices in keeping with their individual preferences and desire for independence. To this author’s mind, there is no more noble task than supporting this basic desire. Associated challenges are numerous and wide-ranging—making for an extraordinarily stimulating mission. Professionals and parents, sometimes of the same mind, sometimes with opposing views, are presented with ongoing issues requiring a delicate weighing of protective oversight vs. dignity of risk in the essential effort to assist an especially vulnerable human being in living a rich and self-actualized life.
Family members are particularly challenged to make identity adjustments, both in terms of their grown child and their own role in their grown child’s life. It is sufficiently daunting to grant autonomy to any human being who you have fed, clothed, consoled, counseled, cajoled, disciplined, cheered, and housed for twenty years. How do you “let go” when that person is someone who rarely makes eye contact, makes loud, odd vocalizations and flaps their hands every time they change location, and if left to their own devices would eat only pizza, water crackers and grape jelly? How do you switch gears from being that child’s caregiver and protector to that adult’s supporter and advocate?
Professionals, too, are confronted with seemingly dichotomous responsibilities. On one hand, they are charged with insuring the health and safety of every individual for whom they have oversight. This includes folks who want to escape environments that may, for them, be too bright, too noisy, too crowded, or too unfamiliar; who may provoke aggression in others due to a compulsion to repeat the same word, phrase, or snippet of a commercial again and again and again; who may have no awareness of danger. On the other hand, they are trained to enable and honor choice-making; respect preferences; and encourage and promote independence.
I assert a trite but I think true summation: nothing worth doing is ever easy! I am privileged to have come to know many families whose diligent efforts and dedication to bringing their children up to “be all they can be” have resulted in many successes. One young man who comes to mind, who has an intellectual disability in the mild/moderate range and is prone to high anxiety, has successfully learned to use the New York City subway system, is holding 3 part-time jobs, and lives semi-independently in an apartment where he enjoys both privacy and company.
I also have the good fortune of working at an agency with colleagues who thoughtfully toil to do right by the people entrusted to our care, while complying with ever-increasing demands from various authorities for meticulous documentation and budget matters. Individuals who started services with us by attending a school holiday respite program have transitioned to our day habilitation and residential services, followed by service coordinators who strive to insure that outcomes important to the individual are identified, pursued, and achieved. These goals can include being able to hand a cashier the right amount of money to purchase a favorite CD; cooking a favorite meal from their country of origin; or simply selecting and wearing fabrics that maximizes their comfort because they are highly sensitive.
When working with people who have very limited communication skills and do not initiate activities or interactions, staff need to be extremely attentive to body language and facial expressions, and provide a wide variety of activities to discover what interests and pleases the individual.
Access to these services is quite different than accessing education services, which are mandated by law. Services for adults with developmental disabilities are not entitlements. They must be requested and pursued by the individual and their advocates.
Families should not assume that if their child has been in special education they will automatically be determined to be eligible for adult services. There are very specific documentation requirements and enrollment procedures that must be followed to be able to access services funded through the Office for People with Developmental Disabilities, which contracts with New York’s vast network of non-profit providers.
Every county currently has a local branch of OPWDD called a DDSO (Developmental Disabilities Service Office). DDSO’s have lists of agencies that provide services in their county. In New York City Resources for Children with Special Needs is also an excellent place to learn about agencies and services.
The first thing the parent of a student close to graduating needs to do is find an agency that provides Medicaid Service Coordination, and work with that agency to apply for that service. The DDSO or non-profit providers can make referrals to families for obtaining the right type of evaluations needed to apply for eligibility, which often are not available from school.
Using family support services, such as respite, a social skills program, or parent training – from an agency prior to graduation, is an excellent introduction to services in the adult service delivery system while John or Jane is still a minor.
It happens that New York State’s service delivery system is on the cusp of some major changes. The system will, however, continue to be largely funded by Medicaid. Individuals reaching the age of majority will not have their parent’s income counted toward eligibility, and should be enrolled in Medicaid as soon as they turn 18 if they have not been eligible prior due to family resources. Information about system changes, which will come about due to New York’s application to the 1115 Waiver – is available at OPWDD’s website www.opwdd.ny.gov.
Parent-to-Parent of New York State is another organization that can be contacted for assistance with the transition process. It can be overwhelming to navigate the adult service system and decide which agencies to contact, all while adjusting to your child leaving school – and childhood – behind. Information about Parent-to-Parent can be obtained from their web site www.parenttoparentnys.org.
Early adulthood marks a major transition – a significant milestone that underscores the lifelong nature of developmental disability. Differences between affected individuals and non-disabled peers may have become increasingly evident, and some goals may need to be adjusted. Adulthood may also bring unexpected maturity, improvements in adapting to environmental expectations, and most importantly, ongoing skill development. Today’s adult service system is focused on supporting continued personal growth, respecting individual rights and preferences, and the rewards of contributing toward enriching each person’s quality of life.
Laurie is an educational therapist who practices in Midwood, Brooklyn and makes home visits throughout the city. Laurie’s background includes instructional, behavioral, and rapport building strategies with pre-schoolers with autism; children, teens, and adults with intellectual disabilities and/or autism; school-aged children with reading disabilities; and adults dually diagnosed with intellectual disability and behavior disorders. Laurie works to identify the underlying causes of learning difficulties when developing the best intervention plan to set the student up for success. She can be reached at firstname.lastname@example.org.
Tags: adult independence, adult service delivery system, adulthood, Brooklyn, Brooklyn Letters, communication skills, coping with change, Developmental Disabilities Service Office, developmental disability, early adulthood, educational therapist, family support services, Laurie Yankowitz, Laurie Yankowitz Ed.D., limited communication skills, Medicaid Service Coordination, Office for People with Developmental Disabilities, Parent-to-Parent, special education
In recent years, autism spectrum disorders (ASD) have gained a great deal of attention for the rising prevalence of the diagnosis. This has created a greater level of awareness in our community, but also has lead to some misunderstandings about what ASD is. ASD is a developmental disability that affects three areas of functioning; these are language/communication, social functioning, and behavior. In the early years, an individual with ASD presents difficulties either in social communication, imaginative play, or social interaction. Over time, the characteristics described below also become evident.
A person with ASD typically has an early history of language delay. Some children even have a regression in language skills, meaning that they start to develop language, but then stop speaking. This regression can be gradual or sudden. The good news, however, is that most people with autism spectrum disorders develop language, particularly with the help of intervention.
Individuals with ASDs also tend to use language in an idiosyncratic manner. These idiosyncrasies include using language in a repetitive manner (echolalia), speaking with an unusual tone of voice, using formal language, and speaking in an invented language/using invented words. Some children speak much like an adult would. Conversation is also difficult for people with ASD. Someone with ASD may talk a lot, but it is hard for them to engage in a reciprocal conversation, meaning that they might talk on and on about one topic or try to bring conversations about varying topics back to a topic of particular interest. Others might not respond at all to the social use of language. In children with ASD, there is also sometimes a difficulty with pretend, imaginary play. This is sometimes an area of play that children with ASD do not enjoy.
Individuals with ASD vary in terms of their interest in engaging socially with others. Some people with ASD really want to have friends and interact with others, while some people with ASD prefer to spend time alone, not interacting with others. In both groups, peer relationships are difficult. Those who want to engage with friends often have difficulty with the reciprocal nature of social relationships, so skills such as turn-taking, sharing, and allowing for everyone to influence the progression of play can be a struggle.
Another often problematic area of social development for individuals with ASD is the use of nonverbal behaviors to regulate social interactions. This means that a person with ASD may have trouble using eye contact, so they may avoid making eye contact, or they may make too much eye contact such that it appears they are staring. Facial expression and gesture also may be implicated here, so that the person with ASD may have a limited range of facial expressions (e.g. always smiling) or do not use or inconsistently use gestures such as waving goodbye and pointing.
Individuals with ASD may also have trouble with a concept known as “socioemotional reciprocity.” This means that social skills such as comforting others who are hurt or sad, responding appropriately when someone approaches them, and initiating social contact in an appropriate manner may be difficult for them.
Finally, individuals with ASD have trouble in many cases with “shared enjoyment.” Shared enjoyment refers to behaviors such as smiling, making eye contact, and saying enthusiastic comments, such as, “This is great!” when happy and excited about something.
Interests and Behaviors:
People with ASD often have strong interests that captivate them. These interests can pervade play, conversation, leisure time, and academics, and in many cases, the individual is incredibly knowledgeable about their topic of interest. A person may have one interest that they maintain for years and years, or they may have an intense interest for a month or two, and then shift to a new intense interest.
Individuals with autism also are often interested in the parts of objects. For example, instead of playing with matchbox cars by setting up a racing scenario, they may prefer to turn the car over and watch the wheels spin. Individuals with ASD also may engage in repetitive motor behaviors, such as hand flapping or finger flicking. These mannerisms may be brief and subtle, or they may be very obvious.
Finally, people with ASD often adhere to routinized behavior. For instance, they may insist on taking the same route to school everyday, or keeping the same strict schedule day after day. Many parents don’t recognize these routines until an unexpected disruption occurs and their child becomes very upset.
ASDs can be diagnosed at a range of ages, from early childhood through adulthood. No matter what age, diagnosis can be a valuable way to secure the supports and services an individual might need to meet their potential.
Carolyn Kessler, Ph.D., is a child psychologist with more than 10 years of experience working with children, adolescents, and their families on issues related to behavior management and parenting, anxiety disorders, mood disorders, developmental disabilities, and ADHD. Family training is a key component of her therapy. Dr. Kessler specializes in the diagnosis and treatment of autism spectrum disorders. She is a Codirector of Psychology Services at the New York University Child Study Center’s Institute for Pediatric Neuroscience and is in private practice in Park Slope, Brooklyn, where she provides assessment, treatment, and consultation to families and schools. In addition to standardized testing of IQ, achievement, memory, and behavior, her assessment skills include the use of the Autism Diagnostic Observation Schedule (ADOS), an instrument on which Dr. Kessler trains other professionals, as well as the Autism Diagnostic Interview- Revised (ADI-R).
Tags: autism, Autism Spectrum Disorders, Brooklyn, Brooklyn Letters, Carolyn Kessler, developmental disability, eye contact, language delay, Licensed Child Psychologist, Park Slope, routine, social functioning, socioemotional reciprocity