Transition to Adulthood - It's Not Just a Daytime Activity (Part 1 of 2)

Thu, October 28, 2010

NOTE: This article refers to Medicaid Service Coordination (MSC) which is no longer a service funded by OPWDD. Instead there is Care Coordination, which is a similar service, but one provided through care coordination companies. For more information, feel free to call YAI LINK at 212.273.6182.

This month, YAI Network Senior Coordinator Jennifer Shaoul presents the first of two parts on how to prepare your loved one for the transition into adulthood. Both pieces address many different areas needed to achieve independence and adult living skills  In part one, an introduction to the New York State Office of People with Developmental Disabilities is offered, as well as an overview of healthcare, behavior, socialization and case management needs.

When people with autism and other developmental disabilities, their families and professionals discuss “transition planning,” the focus is generally on day programs, supported employment, advanced education or competitive employment.

The transition from Department of Education services to adult services, however, goes beyond the need for appropriate day time activities. There are some equally important transitional steps, which unfortunately are frequently overlooked.

Explore eligibility for services through the Office of People with Developmental Disabilities (OPWDD)

Families of individuals with autism spectrum disorders often bypass this step. Parents tend to think their child wouldn’t be eligible for services, or that appropriate services are not available. Some families don’t realize that an individual can be high-functioning and still be eligible for services if the person has difficulty functioning in his or her environment.

Establishing eligibility with OPWDD, though you may never need or use these services, is insurance for your family member’s future. Even if you pursue other avenues of support, OPWDD services may help you achieve goals through individual support and training. Parent, caregiver and family support services are also available.

The earlier OPWDD eligibility is established, the earlier one can access services and supports that can help an individual be even more successful as they age.  It is best to establish eligibility by age 22.  Beyond that age, it is still possible to prove eligibility, but more difficult.

You can learn more about the many services available for people with DD by obtaining a Family Support Directory for your county from your local Developmental Disabilities Service Office (DDSO). Visit the OPWDD to find your local office.

Don’t be disappointed if your family member with autism doesn’t obtain eligibility – this may actually be a sign of how high-functioning he or she is. Also, there are sometimes other funding streams or private pay options for certain necessary services.

Health Care: Transition from Pediatrics to Adult Medicine and More

Doctor and patient

Unfortunately, many families wait too long to make this transition. It’s hard to leave a trusted pediatrician who has been very patient with your family member, but unless that practitioner has expertise in adult medicine, you are doing your family member a disservice. There are many doctors available in the New York metropolitan area with expertise in treating adults with ASDs. 

Young women with disabilities should see a gynecologist for recommended check-ups. Whether or not these women are sexually active, they will need breast and pelvic exams and pap smears for preventive care. 

Some individuals are particularly sensitive to dentistry, gynecology and blood work. Do not avoid treatment! Lack of care often leads to much more serious challenges later on. Work with clinicians and health care practices that are familiar with and utilize desensitization techniques to overcome sensitivity to treatment and fear.

Socialization

Having friendships is an important part of leading a full and satisfying life. People with ASDs often have trouble with making and keeping friends. While day programs can help facilitate this, those in work settings often find navigating relationships especially difficult. There are opportunities for social skills training available and also programs both within and outside the OPWDD service system that provide opportunities for individuals to meet and form friendships. 

Many people with disabilities have an interest in dating and sexuality. It is important for families and professionals to gauge an individual’s interest and activity level and make sure they have the skills and knowledge to make appropriate and safe decisions.  Unfortunately, some individuals engage in what’s deemed inappropriate behavior simply because they don’t have access to socially appropriate outlets.

Behavior

Behaviors that were tolerated or even cute when your family member was younger may prove detrimental or dangerous as he or she grows older. These behaviors may limit the programs available to them and/or limit potential friendships and relationships. Identifying the most inappropriate behaviors and working with an expert on developing a behavior plan to eliminate maladaptive behavior is critical. The “one-to-one paraprofessional” in schools is not generally available as an option in adult programming. 

Case Management – To Have or Have Not

You do not need Medicaid to have a case manager, though most are funded through Medicaid and obtained via the OPWDD system. Some families expect that a case manager or Medicaid Service Coordinator (MSC) will take care of obtaining all these services for them. It’s important to understand that the role of the MSC is currently evolving. And while many MSCs are extremely knowledgeable and can be a great resource, the increased demand for the service and the turnover rate in recent years means that there are a large number of MSCs that may be bright and motivated but not necessarily knowledgeable and experienced.

The service system is complicated and it takes some time to fully understand it and gain expertise. If you get a very experienced case manager, consider yourself very lucky. Your best approach is to ask these questions: Is he/she bright and motivated? What kind of training will the agency provide? Does the supervisor have a lot of knowledge and experience? If the answer is no to any of these questions, ask for another case manager or try another agency. If the person you get is willing to do research with and for you, he or she can be a real asset. 

Help is Available!

Don’t be discouraged.  Yes, there is a lot to do and a lot to think about.  But there is help available. And some things are more urgent than others depending on your family member’s abilities and needs. Feel free to call YAI LINK at 212.273.6182 and an experienced and knowledgeable Intake Specialist will provide you with information and resources to help you access the supports you need for your family member. LINK makes referrals both within and outside of the YAI Network and keeps a vacancy database to help people get connected to agencies that have availability.

Jennifer Shaoul is Senior Coordinator of Intake at YAI LINK, the intake, information and referral unit at the YAI Network.

Continue reading "Transition to Adulthood - It's Not Just a Daytime Activity" with Part 2.