Legal Documents

To begin developing a plan for your child or yourself, first create an orderly collection of information and documents. This includes the educational, therapeutic and medical history: contact information for doctors, therapists and other service providers, key medical records, names and dosages of all current medications, a complete description of the disability, educational summary, current Individualized Education Plan (IEP), Individualized Transition Plan (ITP), and employment records.

You will also need to collect important documents: birth certificate (original or duplicate copy), social security number, school or day support records, guardianship order and any other legal documents regarding the legal status of the child in the case that parents become unable to maintain responsibility for his or her care. A Letter of Intent is a document that summarizes overall hopes and desires of and for the person who has a disability.

You will need to retain an attorney to prepare legal documents. Local organizations or bar associations may be able to help you find an attorney who has experience in estate planning for children with disabilities. The Virginia Department of Education has developed a document about the transfer of parental rights in "Transfer of Rights for Students with Disabilities Upon Reaching the Age of Majority in Virginia."

Legal documents that may be required include a will, power of attorney, medical directive, trust,, or guardianship.

A will is a written document, generally prepared with the help of an attorney, that provides instructions for the disposition of property after death. Because many forms of government assistance are denied to individuals with substantial assets, the will must exclude the child with a disability from inheriting or find an alternative way-such as a "special needs trust"-to maintain the child's eligibility for benefits and insulate the inheritance from government claims seeking reimbursement of previously paid benefits. The will also appoints the executor, the person charged with making sure the will's provisions are carried out. If the will provides for a trust, a trustee must be appointed to manage the trust until its termination. The will should identify a guardian in the event of the deaths of both parents to ensure continued care by someone the parents trust.

A Durable Power of Attorney is a legal instrument that gives someone authority to make decisions in your place. Under the Individuals with Disabilities Education Act, there is a specific power of attorney for educational decisions. A suggested form is included in "Transfer of Rights for Students with Disabilities Upon Reaching the Age of Majority in Virginia."

A medical directive is a written document spelling out your wishes to accept or refuse medical treatment if you are unable to make medical decisions for yourself. An Advance Medical Directive form was developed by Martha Jefferson Hospital in collaboration with the University of Virginia Medical Center. The form is available on-line at www.marthajefferson.org/advanced.php.

A trust is a type of legal entity used to hold legal title to property for the benefit of one or more persons. The person creating the Trust is often known as the Trust Creator or Grantor. The person or institution holding legal title to the property is called the Trustee. The persons who are intended to benefit from the Trust are known as Beneficiaries. For people with disabilities, a "special needs trust" (SNT) gives the trustee absolute discretion to spend trust assets for expenditures that are not covered by public assistance programs. The SNT supplements, but does not replace, public assistance by paying for items such as vacations, field trips, traveling companions, entertainment, that will enhance the beneficiary's quality of life. The SNT must be carefully written to protect eligibility for public benefits. In Virginia, the Commonwealth Community Trust (CCT) is a statewide non-profit organization established for Virginia residents to provide a convenient and economical way to have trust funds administered for people with disabilities that will supplement the benefits offered by entitlement programs. CCT's mission is to enhance government programs for the lifelong special needs of the beneficiary so that he or she can live securely.

A Guardianship is a court-approved legal relationship between a competent adult (known as a guardian, or conservator) and a minor child or an adult who has been declared legally incompetent. It gives the guardian a defined degree of authority and a duty to act on behalf of the person in making decisions affecting that person's life. Parents are legal guardians only until their children reach the age of 18, regardless of disability. Parents who want to retain decision-making power must go to the courts to seek guardianship. In the event of the deaths of both parents, it is important to name a Guardian to ensure continued care by someone the parents trust.

Additional information: Exceptional Parent is the leading publication for the special needs community. EP's on-line resource provides information, support, ideas, encouragement & outreach for parents and families of children with disabilities, and the professionals who work with them. Information on Life Planning is available at: www.eparent.com/lifeplanning. You must register to access the full contents of the site.

The Arc of the United States has developed A Family Handbook on Future Planning to help families review and inventory the needs and strengths of their family member, determine what should be in a plan and then locate qualified professionals and resources to finalize the plan.