Adult Letter of Introduction

Thank you for visiting this section of our website. The information provided in this section will likely provide you with up-to-date facts about Down syndrome. We are fortunate to have the Down Syndrome Aim High Resource Center right here in the Capital District area to provide information and support to parents, professionals and individuals who seek information on issues about Down syndrome.

The Down Syndrome Aim High Resource Center (DSAHRC) is a nonprofit organization with a Board of Directors, a professional staff, and families and professionals committed to increasing opportunities for individuals with Down syndrome. The purpose of DSAHRC is to enlighten and encourage the broader community to recognize the individuality, uniqueness, and capabilities of individuals with Down syndrome, and to reflect the hopes and dreams of those individuals and their families.

Read More
Tuesday, 20 December 2011 21:07

Life Planning and Down Syndrome

Written by Barton Stevens, ChLAP

Rapid advances in clinical treatment and greater medical attention to people with Down syndrome during the 20th century have increased the life expectancy of individuals with Down syndrome. As many as 80 percent of adults with this genetic condition live to age 55 and beyond. This new longevity needs to be incorporated into lifetime planning when a child is born. The law assumes that people over the age of 18 are competent to manage their own affairs regardless of disabilities, and parents are no longer considered legal guardians after this point. If protective provisions are not in place, the courts will make important decisions. Physical, social, financial and legal issues must be considered, as well as siblings and service agencies. A well-made life plan is essential for long-term quality life for your loved one with Down syndrome.

Q. Why is it important to begin life planning early in my child's life?

A. People with special needs will typically survive their parents. If families do not put their wishes for their loved one in writing early on or fail to make provisions for future care, supervision and security, these decisions will be made by government agencies, the state and the courts. Family conflicts may arise over what is best for the individual. The only way for parents to be assured that their wishes will be carried out and their child will be secure is to prepare a life plan.

Q. What are the key issues to address in planning for the future?

A. Key issues to address are lifestyle issues, which include consideration of the preferences of the person and their day-to-day care needs; legal issues, which include wills, trusts, guardianship and trustees; financial issues, which include creating a budget and providing funds to support it; and government benefits, which may include Social Security, Medicare, Medicaid and military pensions.

Q. When should families begin this process?

A. As soon as possible. Regardless of whether the person with a disability is four months old or forty years old, planning is necessary.

Q. Can any attorney, financial advisor, accountant or other professional do this work?

A. No. Few professionals have extensive experience in this field. It is important to work with someone who specializes in estate and future needs planning for people with disabilities.

Q. What is Supplemental Security Income and how does one qualify?

A. Supplemental Security Income (SSI) is a federal benefit provided to children with eligible disabilities (Down syndrome constitutes automatic disability eligibility) who are under age 18 (or under age 22 for a student regularly attending school). Regardless of disability status, the family must also have limited income and resources. After eligibility lapses due to age, a person may qualify as an adult if the disability began prior to age 22 (again, Down syndrome always satisfies this requirement), and the individual's income and assets are below a certain amount. A child's eligibility may change when reapplying as an adult.

Q. Are there other Social Security benefits available?

A. In addition to SSI, Social Security Survivor Benefits and Social Security Disability Income (SSDI) are also available to qualifying individuals. You may call Social Security at (800) 772-1213 (TTY: 800-325-0778) or visit their Web site at: for more information.

Q. What is the best method of leaving assets for the care of a person with special needs?

A. Family and friends should not name the person as a beneficiary in their wills, life insurance, annuities or pension plans. The person with special needs should be left no assets in his or her name. Anything intended for the person should be left to a special needs trust.

Q. What is a special needs trust?

A. A special needs trust is a legal document that enables family and friends to leave assets to provide for the person with a disability. When properly drafted, the funding assets are not considered to belong to the person, but are placed in the trust to provide for their supplemental needs. This will avoid the termination of government benefits and, for individuals on Medicaid, will prevent the loss of these assets to repay Medicaid for previously provided health care services.
You need not have a large estate to benefit from a special needs trust. Assets in excess of $2,000 in the person's name can result in termination of some benefits or be used to repay Medicaid.

Q. Is there any risk in leaving assets to other family members designated to provide for the person with a disability?

A. Yes, even though you trust others to use your assets to provide for your loved one, problems can arise that they may have no control over. If assets are left to another person, those assets legally belong to them. The assets may be lost due to lawsuits, creditors, divorce or the death of the holder of the funds. Instead, this individual can be named trustee of the special needs trust. This will protect the assets for the person with Down syndrome.

Q. What is the best way to leave information for the person's care when I am no longer here to provide it?

A. A detailed document known as a letter of intent is recommended. While this letter is not a legal document, it includes details about the person's day-to-day care needs, their abilities, diet, activities, rights, medical care, etc. It is recommended that you make a video providing instructions and showing care providers how to assist the person with special needs in performing the typical activities of daily living, such as bathing, dressing, food preparation and communication.

Q. As a parent, do I automatically retain the same legal authority on behalf of my child after he/she reaches age 18?

A. No. At 18, your child is an "emancipated adult" under the law. To retain legal authority, you must first decide if legal guardianship is appropriate. If so, you need to apply. As laws vary between states, you should consult legal counsel specializing in guardianship.
If guardianship is not necessary or appropriate for the person with special needs, another option is durable medical and legal power of attorney. This is a legal document that authorizes someone to make decisions on behalf of the person with special needs when he or she is unable to. The person granting the power of attorney (in this case the person with special needs) does not relinquish any rights. He or she may rescind this document at any time.

Q. What is a guardian? What is a trustee?

A. Guardians are appointed by the courts to serve in a number of specific ways on behalf of a minor child or an adult who is considered incapable of managing certain necessary functions for themselves. If the parents of a child with special needs want to continue as the legal guardians after their child is age 18, they must petition the courts to be appointed. Guardianship is a court-ordered mandate by which an individual or institution is appointed to: (A) manage the estate of the person judged incapable of caring for his or her own affairs; (B) be responsible for the care and decisions made on behalf of a person when he is determined to be unable to care for himself. A conservator/guardian can be appointed to serve in one or both of these ways. In some states guardians assist the person and conservators assist the estate of the person.
A trustee is the person who manages the trust. There may be more than one trustee. Trustees have fiduciary responsibility for seeing that the funds are properly invested and disbursed according to the wishes of the trustor and the laws of the state. The guardian and initial trustee may be the same person.

Q. Who can I choose to serve as a guardian or trustee?

A. Anyone who you feel you can be trusted to fulfill your wishes and provide the best care and attention for your loved one is a good choice to be a guardian or trustee.

Q. Does life planning provide any benefits to the parents now or only after they are no longer here?

A. Life planning is important for today, tomorrow and the future. By creating a living special needs trust, families can begin funding their plan immediately and provide a place to put assets for the person's future. The letter of intent should be given to the person's teachers, doctors, therapists, employers and anyone else actively involved in their life as both an instructive piece and for their input as well.

  • Life planning should be started as soon as possible to avoid important decisions being made for the individual with disabilities by government agencies, the state and the courts.
  • Lifestyle preferences, legal issues, financial security and access to government benefits should all be considered when doing life planning.
  • A special needs trust, prepared by a professional with experience in estate and future needs planning for persons with disabilities, can avoid the loss of assets intended for the person with disabilities.
  • A letter of intent creates a record of critical information about the day-to-day care needs, abilities, diet, activities, rights and medical care for the person with disabilities.
  • Individuals with disabilities, once they reach age 18, become emancipated adults under the law. If legal guardianship for the individual is appropriate, you must apply for guardianship with the state in which the individual resides.
  • A guardian is a legally appointed person responsible for the care and decisions made on behalf of a person with disabilities deemed unable to manage certain necessary functions for themselves.
  • A trustee manages the trust established for the individual. The same person can be both guardian and trustee.
  • Starting life planning early enables the family to build the special needs trust fund and make plans that will serve the individual with disabilities well for years to come.
Source: ©1995-2003 National Down Syndrome Society, (800) 221-4602,

Helpful Resources