By Mohan Mehra, President, The Arc Board of Directors, Washington, D.C.

The Arc recently completed a national study of over 5,000 parents, siblings and caregivers of people with intellectual and developmental disabilities (I/DD). The study, titled FINDS (Family and Individual Needs for Disability Supports), asked about their needs and access to a broad range of supports and services.

One of the surprising findings from the study related to planning for the future. When asked, “Do you have a plan for where the person you care for/support will live once you get older?” 62 percent indicated that they do not. Further, 65 percent disagree or strongly disagree that they “Get enough help planning for the future.”

This is further corroborated by the findings from a 2011 study by the MetLife Center for Special Needs Planning, titled, “The Torn Security Blanket.” Caregivers are very concerned about financial security− both for their dependent’s future and for the family’s own financial health. Seventy-six percent are concerned about providing a good quality of life for their dependent.

Why is this happening? While the Internet has made information more available, families are uncertain about where they should go for financial guidance and education. This is compounded by the fact that people with I/DD are living longer and our nation’s financial resources are stretched, resulting in cuts in assistance programs at the local, state and national levels. All of this has made this subject of planning for the future more stressful for families.

So what can be done? Let me make two suggestions.

First, to families, I ask that you reach out to your local chapter of The Arc and ask them to conduct some education and training in this area.

The Arc has the largest reach into families of people with I/DD of any organization serving people with disabilities. Through our 700 chapters, including 41 state chapters, it is estimated that we serve over 20 percent of all children and adults with I/DD. The other unique aspect of The Arc is the important role families play in its leadership and governance. In most chapters, a majority of the board members are parents or family members of people with I/DD or people with I/DD themselves. Families govern and trust The Arc.

Most chapters already have relationships with special needs attorneys in their area that can do this. Planning for the future of your loved ones is a very personal process, and you have to work with an attorney that you can trust and who will be there for you in the future. I can support this from my own personal experience.

Second, to attorneys who specialize in elder law or special needs planning, I ask that you get more involved with chapters of The Arc. You can get involved as a committee member, a board member or simply as a volunteer.

Contact the local or state chapter in your area. State chapters focus specifically on legislative advocacy and training and education, and can use your skills to help educate our families on planning for the future of their loved one. Some of the state chapters, such as in Indiana, New York, Texas, Washington, Ohio and Minnesota, operate their own pooled trust programs and are very engaged in this effort. The important thing is to have attorneys engaged at the chapter level both as volunteers and in governance. This encourages families to seek out their counsel and then work with them on the planning.

It will take some effort to make real progress. But we have to start with families realizing why this is important. Ben Franklin eloquently described the importance of planning when he said, “By failing to prepare you are preparing to fail.”