A Letter of Intent is a document written by the individual, parents, guardians, or other family members that describes the individual with MR/DD’s history, his/her current status, and what you hope for him/her in the future. Although the Letter of Intent is not a legal document, the courts and others can rely upon it for guidance in understanding the needs of your family member with MR/DD. It is a document that can be written today and updated regularly as the years go by.

Finding a specialized attorney

One of the first challenges facing families who begin the life planning process is to locate an attorney who has the necessary skills and experience in working with people with MR/DD. To find the right attorney, talk to other families, interview attorneys, and do your research. This is a team process. Your attorney should be willing to work closely with you, your financial advisers and various social services agencies.

Charitable Bequests

What is a Charitable Bequest? In general, a charitable bequest is a written statement in a will which directs that a gift be made to a charity upon the death of the person who established the will (the testator).

Sample bequest language: Your will can also include a charitable bequest,  “I hereby give, devise and bequeath to Voice of the Retarded, a nonprofit corporation organized and operating under the laws of Illinois, located in Rolling Meadows, Illinois, the sum of ___________ (OR ___ % of the residual of my estate after payment of the foregoing bequests, or the following described property ___________________). This is an unrestricted gift and may be used to further the mission and objectives of Voice of the Retarded.”  You are advised to consult your attorney to ensure compliance with state laws.

Please consult your attorney to ensure compliance with state laws.

Special Needs Trust

The function of the Special Needs Trust (SNT) is to take on the role of a loving parent, family member or other provider in funding supplementary needs. These are needs that go beyond what is provided by government benefits. The SNT can provide funding to buy materials for a hobby, tickets to a movie, a trip, videos, or a television set. The SNT, properly drafted, tells the trustee (the person who steps into the shoes of the parents) how to use proceeds provided by the parents for the family member’s unique needs. These proceeds may come from the parent’s Will, Living Trust, their life insurance, or other source.  Legally, the Special Needs Trust is the owner of these assets, not your family member with MR/DD, which is a critical to assuring continued eligibility for key government benefits, including Medicaid.

The Special Needs Trust (SNT) will not work properly if you have not established the customary Last Will and Testament. The will should say something like, “I hereby leave 50 percent of my estate to the Jane Doe Special Needs Trust.”

Special Needs Trusts generally end after the death of the person with MR/DD. The trustee provides for the final arrangements and other expenses. The trustee also has the discretion to end the trust if the laws change and it is formally challenged by government. 

Life insurance policy, investment, or pension plan

 In addition to not listing your family member with MR/DD as a direct beneficiary, take caution not to list your family member with MR/DD as a part of a group of beneficiaries (such as “all my children equally”) on a life insurance policy, investment, or pension plan. Some families have purchased special life insurance policies for the purpose of taking care of their child. Make sure that the Special Needs Trust is the designated beneficiary and not the person with MR/DD.                      

Guardianship

Some people with MR/DD need help making some or all of their life’s decisions, including those that arise daily. A court will decide whether full or limited guardianship (also called “conservatorship” in some states) is needed and will appoint the guardian. In most cases, the guardian will be a family member. Some state statutes even indicate a preference for family members as guardians because family members typically have a lifelong connection with the individual with MR/DD and can best ascertain the individual’s wishes and best interests. State law establishes the specific duties of the guardian or conservator.

It is important to note that your status as a parent or sibling or other relation is not the same as being a legally-appointed guardian. Once the child with MR/DD reaches adulthood, parents who want to retain decision-making power must go to the courts to seek guardianship.

During your lifetime you can enlist co-guardians or, in some states, successor guardians, to allow seamless transfer of guardianship authority upon your passing. A successor guardian can also be named in your will, but is then subject to the sometimes time intensive probate process.

Once an individual reaches adulthood, the individual with MR/DD’s eligibility for public benefits relates solely to his/her personal income and assets. A guardian will never be held liable for the cost of that individual’s care, no matter the personal wealth of the guardian.

Advocates

A life plan for your family member with mental retardation may also include the assignment of an advocate(s). An advocate can offer advice and other assistance concerning the person with MR/DD, but, unlike a guardian, cannot make legal decisions.

Gifts of Stock

Many people use stocks as a way of making gifts to their favorite charitable organization. Stocks that have appreciated in value allow the donor to potentially make a gift much larger than what was originally planned and the donor benefits from a “Double Tax Break.” By making a gift of stock(s) to a charitable organization, you avoid any capital gains tax while also deducting the full value of the stock as a charitable deduction.

Charitable Remainder Trust

A Charitable Remainder Trust (CRT) is an irrevocable trust that is designed to convert an investor's highly appreciated assets into a lifetime income stream without generating estate and immediate capital gains taxes. When the trust ends, the remaining assets pass to the qualified charity or charities of your choice.

                VOR would be honored to be the beneficiary of your Charitable Remainder Trust.

Conclusion

VOR sincerely hopes that in providing this resource we have demystified and made less intimidating the future planning process. As parents, siblings and family members of people with mental retardation and developmental disabilities, you have all learned that no one is better equipped than you to look out for the present and future interests of your family members with mental retardation and developmental disabilities.

If you would like further information regarding making a gift to VOR (Voice of the Retarded), please contact Julie Huso, Director of Resource Development at 605-370-4652.

VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007

877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com