Posted in the Buffalo Spree, January 2014
Every parent’s hope is that their children with disabilities will be able to transition to adulthood into a career and be able to live with at least some independence. For parents of children with disabilities that significantly affect the level of independence in adulthood, planning for their children’s future when they are no longer able to care for them is scary, but must be included in the plan which should also include a plan for any crisis that may occur with the parents.
It may seem that life should get easier as you age, but the reality is, there’s just as much need — if not more — for planning and decision-making. This is especially true for the parents of special-needs children. Today, not only are parents living longer, individuals who are developmentally disabled live longer, which means their parents will be caregivers longer. Parents have more to worry about should they become physically unable to look after their adult developmentally disabled child, and more planning to do in the event they pass on before that child.
“I always say there are five major life stages for a family who has a developmentally disabled child. Birth — when they first realize the child has special needs; when they reach school age; adolescence; college or marrying age; and when the parents begin to think about their own deaths,” said Michael Gross, executive director, Heritage Centers. “The last one is the scariest.”
It is the scariest because the parents, who have most likely been the primary caregivers for their children, face giving up total control to strangers. Barbara DeLong, co-chair of the DDAWNY (Developmentally Disabled Alliance of Western New York) Family Committee, and her husband are parents to 21-year-old Laura and are a prime example of this dilemma. Laura functions at the level of a toddler. While DeLong is still reasonably young at age 56, her husband is 68 and not in the best of health.
….There is a great need for parents to start planning early, says Helen Trowbridge Hanes, vice president of Community Living for Aspire of Western New York. Financial planning is a huge part of the picture, since the majority of the developmentally disabled are on Medicaid, which means they can have limited assets. Assets above the legal limits could cause them to lose important services.
….Planning and decision-making remain a critical part of life for aging parents of children with any form of special needs: whether the child be developmentally disabled, handling mental health issues, or dealing with any other challenges that affect their ability to live independently.