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 in partnership, sometimes at loggerheads, 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 an enrollment procedure that must be followed to be able to access services funded through the Office for People with Developmental Disabilities (OPWDD), which contracts with New York’s vast network of non-profit providers.
Every county in NY State 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. The New York City Resources for Children with Special Needs (www.resourcesnyc.org) 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.
For more information, contact the Vice President of Individual and Family Support Services at HeartShare, Laurie Yankowitz, at (718) 422-3271.