To Plan or Not to Plan – That Is Not the Question

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.”



  1. Ann McGee Green April 10, 2012 at 2:07 pm

    I heartily agree with the President’s comments. The Arc is unequaled in its advocacy for those with disabilities and is a tremendous resource for families and professionals. I am grateful to be a member, I love the annual conferences, as I always learn something new and am challenged and encouraged in my own professional advocacy for and support of the special needs community. That is why I am affiliated with the Special Needs Alliance (SNA)and am co-chair of The Arc Affiliations Committee. Many SNA members are very involved with the Arc through local chapters. We also provide educational seminars at the national level by supporting and attending the annual conventions. Many of us also do educational seminars for our local schools and for the local Arc chapters. Please keep in mind that our members are ready willing and quite able to provide educational seminars on all types of planning issues, from estate planning to transitional planning to disability and public benefits issues, all which involve the future well being and quality of life for our families. You can identify a local member of the SNA by clicking

  2. Stephen W. Dale April 12, 2012 at 2:38 pm

    Mohan, what a thoughtful post.

    I would like to focus on this portion of your message;
    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.

    I want to second your sentiments and expand on why attorneys that do special needs planning for persons with developmental disabilities must be active members of their ARC. I am an attorney in Northern California and a charter member of the Special Needs Alliance. My practice focuses exclusively on serving persons with disabilities and their families. The ARC of California is the leading advocacy force for the needs of persons with disabilities and their families. I am a member of the ARC of California as well as the ARC of Contra Costa County and I simply don’t see how an attorney can provide proper counsel to families with a developmentally disabled loved one and not be active with the ARC in their community.

    Tony Anderson – the executive director of the ARC of California has done an outstanding job under the direction of a very committed board to fight the budget cuts and inform our community about the threats our community faces. Tony publishes a weekly letter called the Monday Morning Memo – see – that is very readable and keeps the reader abreast of the key issues and events that affect persons with disabilities and their families. The Monday Morning Memo keeps me up to date with the issues that affect my clients and allows me to provide better counsel to my families.

    For families, if you are planning for a loved one with a developmental disability, and the attorney is not active with their local ARC or at least reading the their advocacy publications, how can you be certain that the attorney truly understands your loved one’s needs. No longer is keeping a loved one qualified for SSI and Medicaid adequate. In all too many cases services for persons with developmental disabilities are eroding across the country, and the primary group advocating for the needs of persons with disabilities is the ARC.

    Stephen W. Dale Esq. LL.M
    Dale Law Firm
    Pacheco, Ca

  3. John Kitchen April 19, 2012 at 8:32 am

    What a great posting! As a family member and trust attorney I have seen the difference that planning can make for a person with disabilities. The key is to find an experienced trust attorney in your state who has seen special needs trusts work well after parents have passed on.

    It is important to have an attorney who knows public benefits laws, trust law and tax law to help with future planning to benefit a person with disabilities.

    The Special Needs Alliance has a “Find a Lawyer” link by state to help locate an attorney knowledgeable in the areas of special needs trust planning. And speaking with other ARC folks who have planned ahead is a great way to confirm your choice of attorney.

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