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What is autism?

Autism spectrum disorder

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Now that I have a trust, who should I choose to be trustee?

The trustee controls the assets placed in trust for the benefit of the special needs child. He or she responsible for distribution to the beneficiaries or for continued management of the assets. A trustee’s duties continue for the lifetime of the child. A trust is a binding legal contract, so the trustee-whether a bank or a relative-has a legal obligation to follow your instructions and to manage the trust funds in a reasonable and prudent manner. Failure to do so can result in lawsuits by the child’s guardian. The skills and financial acumen needed by the trustee depend on the size and type of assets in the trust. For larger trusts, the trustee may require expertise in collecting estate assets, investing money, paying bills, filing accountings (quarterly or annual), and managing money for beneficiaries. For more modest trusts, the trustee may only need to know what the needs of the child are and how to write a check.

The parents generally serve as trustee as long as they are alive. When they die, a successor trustee has to be ready to take over. The successor trustee, such as a family member or friend, can be named in the parent’s or guardian’s will. Because no individual lives forever, a bank or trust company should ultimately be designated as successor trustee.

The trustee should be selected for a number of qualities: financial discretion, knowledge of your loved one’s special needs and likes and dislikes, as well as a genuine interest in the child’s future. The biggest decision to make in designating a trustee is whether to use a family member or a professional. Although a lawyer or a banker can serve as trustee and may be skilled in financial matters, lawyers and banks are expensive and do not necessarily keep track of the disabled person’s individual needs. If available, a responsible family member is usually a good choice.

What is a “letter of intent” and why is it necessary when creating a special needs trust?

A letter of intent is a written document that, although not legally binding, provides direction for the person or persons who will care for the child with special needs (the guardian) after the parents die or are no longer capable of caring for their child. Because it is not a legal document, it is a good idea for you to have it witnessed and notarized. If the child has cognitive ability, he should be involved in drafting the letter. The letter of intent helps the guardian or trustee to care for your child as you would. It should contain the parents’ specific wishes and expectations, as they relate to the future of their disabled child. It is a working document for the future caregiver to follow. There is no regular format for a letter of intent, but it should be detailed and specific. The letter of intent should contain at least the following information about your child: Medical history: The letter of intent should report any existing medical problems, any medications taken regularly, and any allergies to foods or medicines. All prior dental, surgical, or medical procedures should also be included. If you’ve had good experience with doctors or hospitals, put their names and contact information in this letter. Conversely, if you’d like to avoid certain physicians, therapists, clinics, or hospitals, state those wishes and the names of these providers in your letter of intent. Your child’s physician should be able to help you with this.

Housing arrangements: Where should the child live?

How long should they live there? Who should live with the child? Relatives? Friends? Do they need to live in a private or state institution or a particular adult home? Are there people you would not want your child to live with? Are there places or institutions you’d prefer your child to stay out of? How are the living arrangements to be paid for? The letter of intent is the place to write this information.

Education:What type of education would you like your child to get? What school should they attend? Should the child get vocational training? Religious instruction? How should the schooling be paid for?

Recreation and leisure activities: If your child loves to draw and paint and you want him or her to be able to continue to have art supplies and visit museums, this is the place to discuss that.

Legal papers: A description of the type and specific location of all legal papers that affect the child should be clearly recorded in this document. If the parents have a regular attorney, their name, address, and phone numbers should also be listed in this document. The names of your child’s trustees, coguardians, or successor guardians also should be listed.

Child’s personal preferences: Parents may be the only people who are familiar with the day-to-day things that make their child happy and comfortable. Therefore, the letter of intent should include general information and background about your child; such as their likes and dislikes regarding foods, favorite leisure activities, favorite toys,TV shows, sports, or video games. It should state the rights and values you want to preserve. Record

the names of their circle of friends as well as professionals they are familiar with, including the dentist, barber, coach, music teacher, and so forth. If your daughter enjoys getting her hair styled or nails painted once a month, mention it here.

Religious preferences: The parents should be specific about what religion and religious services the child should participate in. How much religious instruction do you want your child to receive? Whom do you want to provide the instruction? Do you wish that they would attend religious services regularly? How often should it be: weekly, monthly, or yearly? Who should be responsible for transporting your child to services?

Final arrangements: In your letter of intent, describe any specific burial arrangements or religious services you’d like for your child.

What can a special needs trust pay for?

Federal benefit programs are designed to pay for the basic needs of their beneficiaries. Under SSI or Medicaid laws, basic needs means housing, food, and clothing. If the disabled person is receiving free housing, food, or clothing from someone else, including a family member or a trust, then the government benefits will be reduced or eliminated. Therefore, the money in a special needs trust cannot be used to pay for housing, food, or clothing.

Despite this, the trust can pay for many things that will make your child’s life more comfortable. Some things that the special needs trust can pay for are:

Home expenses: The trust can be used to purchase a home and perhaps rent it to the disabled person. The trust can pay for repairs, utilities, and taxes for a home; it can purchase furnishings for the home.

Recreation: The money that goes into these trusts can be used to enhance the life of your child over and above their medical care. It can pay for vacations, summer camp, or trips. It can buy recreational or sporting equipment for the child.

Other medical costs: Money in trust can be used to supplement or augment services that Medicaid does not cover, such as certain types of dental care, upgraded medical devices, extra or more intensive therapies, and vitamins.

End-of-life costs: It can pay for funeral and burial costs.

Legal costs: There are legal emergencies that a trust can pay for. If the person is not receiving the services needed from Social Security, Medicaid, or other government agencies, the trust can pay for an attorney or other advocate to fight for the individual. Without this type of help, the person might actually become homeless. If the disabled person is involved in an accident or is accused of a crime, the trust can pay for an attorney to defend them or look after their rights in a lawsuit.

Why do I need to establish guardianship for my adult child? Am I not his guardian already?

The subject of guardianship for a disabled child who is now an adult is of concern to most parents. Parents who have a child with a disability often assume that they can continue to be the legal guardian during the child’s entire life. Although it may be obvious to a parent that their child does not have the capacity to make informed decisions, legally an adult is presumed competent unless otherwise deemed incompetent after a competency proceeding. In other words, while your son or daughter will always be your child, the courts will consider them an adult when reaching the age of 18. As an adult, your son or daughter may legally sign contracts, get credit cards, and borrow money. They can choose where to live, what doctors to see, and what surgery to undergo. Your adult child may dispose of their income and any savings that you have put in their name in any manner they choose or in any way that someone else convinces them. Most alarmingly, they may live with whomever they choose or marry without your consent or approval. The potential for acts of juvenile impulsiveness or for others to take advantage of your child is obvious.

A trustee’s duties continue for the lifetime of the child.

The trust can pay for many things that will make your child’s life more comfortable.

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