The Letter of Intent   l   Guardians & Advocates  l   Trustees   l   Funding a Special Needs Trust   

The Letter of Intent

What do you want for your loved one with special needs?  What are your hopes and dreams for the future? What is important to both you and your child?  What advice can you offer to future care-givers of your child?

Parents have the clearest insight in regard to the day-to-day management of their own child. But what would happen to your child if you were no longer around?  You have the information needed, but unfortunately, someday, you might not be available.  So how can you communicate with future potential care-givers?  The best solution is to write it down.       

Parents of special needs children should take the time to write a letter of intent. While not a legal document, the letter of intent, communicates the “essence” of your child; think of it as a mini-biography of your child.  This is the place where you can transfer the history of your child, from birth to adulthood and beyond.  This is the place to explain the unique aspects of the child, his diagnosis, his level of functioning, and your advice, your vision for the future.

The letter of intent can start with a brief history of the birth and early years.  In addition, you should write down all the vital information, blood types, medical history, social security numbers and dates of importance.  You should include sections about on-going medical issues, medications, lab results, and doctors.  Note date of last appointment, scheduled appointments, and dates of next lab tests, x-rays, MRIs etc.  Include telephone numbers and locations of physicians and dentists.  You can also note information about medical specialists you may have consulted in the past, and notes about follow-ups.  Don’t forget to write down the name, address and hours of operation of the pharmacy.

You should also make sections for educational goals, future expectations, individualized education plans, including questions for the teachers or therapists.  Also include recreational goals, hobbies or interests, or extra curricular activities.  Does you child enjoy spending time with out-of town relatives?  What kind of movies or videos does your child enjoy?  Does he like to swim or go bowling?  Comment on activities that have worked well, those that have not, and those that may have potential in the future.

Who are the VIPs in your child’s life?  Is there a favorite teacher or therapist?  Is there a particular best friend?  Think about all the people in your life who love you and your child.  Make a note of their addresses, telephone numbers, and activities where they and your child like to interact.  Include a section on likes and dislikes, behavioral problems and potential solutions.  Is you child sensitive to wool?  Does he rebel or tantrum if asked to wear a hat? Is there a favorite food or restaurant?  What about allergies?

The letter of intent is a process.  It should be updated often.  Keep lots of blank sheets for notes, questions and follow-ups.  And don’t forget to let your family and successor guardian know of its whereabouts.  This is a invaluable tool which will provide security and comfort to both you, your child, and to any future caregivers.  

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Is a parent the legal guardian of his child?  The answer may surprise you.  By law, a parent is only a child’s legal guardian if the child is a minor.  When your child turns age 18, he is presumed to be an adult.  Why is this important?  It is important because you cannot make legal, personal or medical decisions for an adult child, unless you are the guardian.  Just because your child lives in your home, doesn’t automatically make you his guardian.  This legal relationship must be re-established when your child turns 18.  Guardianship is a legal proceeding in Family or Surrogate Court.  Without legal guardianship, you cannot have absolute assurance that your directions regarding legal, medical or personal matters will be followed.  When you establish guardianship for your adult child, you can also name alternates and successors, those family members who agree to serve as guardian in the event of your incapacity or death.  References to guardianship in your will only applies to your minor children.

A legal guardian does not have to live with the adult child.  Your child can live in a group home, assisted living center, or by himself, and you can still be named his guardian.  By the same token, just because your child lives in your home, doesn’t automatically make you his guardian.

Advocates are other people who are be important to your child.  Think about it. Who else loves your child?  Who will ask your child (or his caregivers) if there is anything he needs?  Who will visit your child from time to time, or take him out for dinner or to a movie?  Who will your child visit for the holidays, or on his birthday?  Consider all of the family members and trusted friends, and ask those that are likely to be in contact with your child to be his advocates.  Who among them can you ask to serve as legal guardian in the event of your incapacity or death?  Take the time to reach out to family members and friends while you are living, and tell them what you will need in the future.  You may be surprised at how many are willing to step up.

The trustee of a special needs trust may or may not be the legal guardian.  A trustee should be someone with excellent judgment and a good heart. But the trustee is the person who will be in charge of the money. This is a position of the utmost importance and responsibility. Sometimes the person who is an ideal legal guardian would not make a good trustee.  Whether you will decide to select two different individuals, or whether you will ask one family member who can serve both roles, is a matter of personal judgment and discretion.

Some families are large and there are many family members to choose from. Sometimes there is an ideal candidate, but he lives in another state. Reflect on the available choices. You may decide to select co-trustees, that is, two family members to act together. Co-trustees must both agree before distributions are made from the trust, and can prevent possible mismanagement.

What if there is no one in the family to serve?  Some families are so small that this is a problem. In that case, a professional or corporate trustee may be used. Corporate trustees, such as a bank, will serve in exchange of a management fee which is often a percentage of the assets. Often corporate trustees will not accept the role of trustee unless the trust is sizable.  On the other hand, corporate trustees will invest and manage the assets professionally for as long as necessary.

Your decision about who you will ask to serve in the capacity of trustee, guardian or advocate will depend much on your family dynamics and parameters.

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The trustee of a special needs trust may or may not be the legal guardian.  A trustee should be someone with excellent judgment and a good heart.  The trustee is the person who will be in charge of the money and financial decisions.  This is a position of the utmost importance and responsibility. Sometimes one person, who is an ideal legal guardian, would not make a good trustee.  Whether you will decide to select two different individuals, or whether you will ask one family member to serve both roles is a matter of personal judgment and discretion.

Some families are large and there are many family members to choose from.  Sometimes there is an ideal candidate, but he lives in another state.  Reflect on the available choices.  You may decide to select co-trustees, that is, two family members to act together.  Co-trustees must both agree before distributions are made from the trust, and can prevent possible mismanagement.

What if there is no one in the family to serve?  Some families are small and this may be a problem.  In that case, a professional or corporate trustee may be used.  Corporate trustees, such as a bank, will serve in exchange for a management fee, often a percentage of the assets.  Many corporate trustees will not accept the role of trustee unless the trusts assets are sizable.  On the other hand, corporate trustees will invest and manage the assets professionally for as long as necessary.

Your decision about who you will ask to serve in the capacity of trustee, guardian or advocate will depend much on your family dynamics and parameters.

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A special needs trust can own any kind of property.  It can have a checking account, a savings or brokerage account.  It can own stocks, bonds, mutual funds, annuities, CDs, jewelry, real estate or anything else a natural person may own.  It can receive a bequest from the parents, grandparents or virtually anyone else.  The contribution may be gifted during a person’s lifetime or upon his death, as a bequest made in a will.

The special needs trust is not considered to be the assets or property of the disabled person.  Therefore, assets owned by the trust are not considered when applying for SSI, Medicaid or any other needs-based programs.  Assets owned by the trust are not available to creditors of the parents or the disabled child.  So, if your child happens to get a credit card and goes on a shopping spree, the credit card company cannot look to the trust for payment.

After the special needs trust is established, the trustee(s) will ask the Internal Revenue Service to issue a federal identification number.  Like a social security number, the federal identification number or EIN is needed to open an account with a bank or investment company.

The special needs trust can be a beneficiary of a retirement account (IRA), pension, life insurance policy or annuity.  The trust may have investment income on property it owns, and may have to file a tax return.

The trustee named in the trust document is responsible to invest the assets, establish accounts, and pay for services or expenses of the special needs beneficiary.  The trustee should make payments on behalf of the beneficiary, but not directly TO the beneficiary. This is because any money received by the disabled beneficiary may be counted by SSI, and reduce his monthly benefit.

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