Category Archives: Guardianship/Power of Attorney

Planning for Adulthood: Aging Parents Face Decisions

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.

Read the entire article here.

Educational Power of Attorney

As youth with disabilities transition to adulthood, consideration is sometimes given to guardianship.  This is a confusing concept to many, and often it is uncertain as to whether the youth is in need of some type of legal advocacy in their adult life.

A 2011 post at the Special Needs Alliance website by Barbara Hughes addresses a concept for higher functioning students that may be a good fit:  the Educational Power of Attorney.

When individuals with disabilities reach the age of 18, they are legally considered to be adults and in charge of their own education decisions. At this point, some will need to have parents or another adult appointed as guardian, to handle all or most of the decision-making. On the other hand, high-functioning individuals with disabilities who are continuing their schooling will not need a guardian but may still need help investigating their options and navigating the education bureaucracy. How can high-functioning young adults with disabilities keep their parents involved and legally permitted to participate in education decisions when guardianship is not appropriate? There’s an innovative alternative which can answer that need: an education power of attorney.

This tool can be very empowering for individuals with disabilities. It enables them to concentrate on learning by freeing them from potentially stressful activities such as filling out forms or standing in a real or “virtual” line to register for classes. The young adult determines who will be the agent to act on his behalf, as well as the scope of the agent’s potential actions, while retaining the authority to revoke the power of attorney at any time.

Read more here.