Special Needs Teens: Afraid to Dream?

jesseAs children grow, it’s only natural for parents to dream of the day they become full-fledged adults, capable of making their own decisions, paying their own bills, and deciding where to live and work.

When you’re raising special needs teens, however, that dream can take very different forms. For us, the dreams are less often about personal achievement than a quest for simple independence:

  • If we invest in that private tutor, negotiate the right IEP, nag and push until we are blue … can he get him to squeak by enough of his classes to get a diploma?
  • Can she really live with her friend in an apartment, or is she going to need a group home and a guardian?
  • If he gets a certificate of completion, what jobs can he get after graduation?

Yesterday my friend Diane and I went to an event at Goshen College for parents of adult (and soon to be adult) children with developmental disabilities: Down syndrome, fetal alcohol syndrome, autism spectrum, and other life-long disabilities. As parents of disabled teenagers, we needed to make plans to help him transition to some kind of independence.

In addition to the keynote sessions on creating trusts, guardianship (and less drastic alternatives, and how to secure disability services (from the Bureau of Developmental Disabilities Services, or BBDS – pronounced “BEEDS”), there were a variety of organizations represented to help families make timely, informed choices. Here are some of the organizations that caught my attention:

  • The Arc Indiana (Indianapolis, Indiana). Karly Sciortino-Poulter, their Outreach Grants Administrator, presented information on guardianships and guardianship alternatives (such as limited guardianships, powers of attorney, healthcare and/or educational representatives. She also urged families to make a “future plan” using the “Center for Future Planning” tool (https://futureplanning.thearc.org/) to guide conversations to protect and provide for the disabled adult while allowing him or her to participate as they are able in the decision making process. For more information, call 800-382-9100 and ask for Laura.
  • Camp Mariposa (www.moyerfoundation.org; summer camp for students with disabilities, with other camps specifically for children who are living with a family member coping with addiction or bereavement). Founded by the Moyer Foundation, with branches in Seattle and Philadelphia.
  • Erskine Green Training Institute (Muncie, Indiana: erskinegreeninstitute.org) This post-secondary school certificate program is for disabled adults who have obtained a diploma, GED, or certificate of completion. Each ten to thirteen week session prepares students for careers in hotel, medical, and food industry.
  • Logan Institute/Community Resources (South Bend, Indiana, logancenter.org). Provides social, emotional, vocational, and other support to people with intellectual and developmental disabilities – including residential services and family supports.
  • GateWay Services (Benton Harbor, Michigan gatewayvro.org). Provides transitional and independence services for disabled adults in Michigan.

If you have a teenager and need to make a transition plan, and are a resident of Indiana, I suggest you begin by reaching out to the Indiana Family & Social Services Administration (100 W South Street, Suite 100, South Bend, IN: 877-218-3059). Or contact the Arc to begin the process. The application for BDDS can take a year, so it’s best to begin the process well in advance of the child’s 18th birthday.

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