Rapid advances in clinical treatment and greater medical attention to people with Down syndrome during the 20th century have increased the life expectancy of these individuals. As many adults with this genetic condition live into their 50s, 60s 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 thought out life plan is essential for long-term quality life for your loved one with Down syndrome. The consequences of not planning are too great to ignore.

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.

No Wills – No Special Needs Trust – No Letter of Intent

No Government Benefit Planning – No Budgeting

The Good News – The government has a plan for you.

The Bad News – The government has a plan for you.

• Your children will have Guardians, Trustees and Conservators appointed by the State in which they live.

• Your estate will be distributed according to the wishes of the State, not yours.

• If assets received in the name of the person with special needs exceeds $2000, they will be ineligible for SSI (Social Security Insurance) cash benefits and Medicaid.

• Assets received in the name of the person with special needs are subject to immediate repayment to Medicaid for healthcare benefits previously received.

• Medicare may be the only healthcare benefit the person with special needs receives which does not offer the same benefits as Medicaid. For example, there is no prescription benefit.

• Assets left to others to care for the person with special needs could be lost to creditors, litigation, divorce or their death. There is no guaranteed security or protection.

• Support provided by others for the person with special needs could be considered income and/or assets reducing or terminating SSI and Medicaid.

• Not all assets pass through a Will. If you fail to make the necessary beneficiary changes and designations, your life insurance, retirement plans and annuities could pass directly to your person with special needs in his or her name resulting in termination and payback for government benefits.

• Without written information explaining the day-to-day care needs of the person with special needs and what your goals and wishes for their future care are, providers will only be able to do what they think you want not necessarily what should be done.

• Do you have a written plan to let others know what you want in the future?

• Have you asked anyone to serve as a Guardian, Conservator or Trustee?

• Do you understand all the available government benefit programs for basic care and supervision?

• Have you identified resources to fund the future needs of the person with special needs?

• Do you have a properly drafted Special Needs Trust that will protect and manage assets provided for the person’s lifetime?

• There are several types of Special Needs Trusts, is your trust the correct type for your intended purpose?

• Do you have current Wills? Does the Will name the person with special needs as a direct beneficiary?

• Is the person with special needs named as a direct beneficiary in your life insurance, annuities, 401(k) or IRA?

• Have monies been paid directly to the person with special needs from a structured settlement because of an accident or malpractice suit?

• Is your Special Needs Trust approved for compliance with Social Security and Medicaid?

• Have you made final arrangements for the person with special needs?

• Have you met with relatives and friends to let them know about your plan?

• Have you reviewed your plan in the last year?

• Do you feel you have done everything possible for your person with special needs to ensure their supervision, security, care and quality of life?

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 are all important to address.

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

No. Few professionals have any experience in this field. It is important to work with someone who specializes in Special Needs Planning. Using traditional estate planning techniques for a family with a loved one with special needs will likely result in the loss of as much as $1,000,000 in lifetime government cash benefits, unlimited medical care, and the government taking assets left in your loved one’s name. Unfortunately, these situations happen frequently.

Supplemental Security Income (SSI) is a federal benefit available 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. Upon reaching age 18 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. In 2008, the person may not have more than $2,000 of total assets. The person may be employed, however, there are income caps and Social Security benefits are integrated with earned income.

There are certain ways of doing this. Simply taking them out of your loved one’s name and giving it to someone else will result in the loss of Medicaid for up to 5 years. There are specific methods of transferring assets from the person’s name that will meet the compliance requirements of Social Security and Medicaid allowing the person to continue to use those assets and remain eligible for government benefits.

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

The best method is a Special Needs Trust. 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. The person with special needs should be specifically excluded from receiving any distributions from a will or trust. In addition, they cannot have any authority under any provision of the will or trust.

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 and/or reduction 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.

There are different types of Special Needs Trusts to fit various needs and situations. Be sure that you understand the difference and have the correct one prepared for your loved one.

A person beginning SSI today at age 18 and living a typical life expectancy to age 80 will receive over $1,000,000 in cash benefits and unlimited medical care. These benefits will be reduced or lost without proper planning.

Children with special needs can remain as a covered dependent on their parents’ employer sponsored group medical plans after they leave public school and exceed the minimum age requirement. Private insurance is always primary over Medicaid and Medicare.

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.

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-today 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.

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 petition the courts in the state that the person with special needs resides in. 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. The person with special needs must be competent to understand and sign the document. They may also change it or cancel it at any time.

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. If lifetime guardianship is needed, consider giving the last surviving guardian the authority to appoint his or her successor. The person with special needs could survive all those listed. If there are no remaining appointed guardians, the state will appoint a successor.

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.

Anyone who 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. While the trustee has the responsibility of investing and disbursing trust funds for the benefit of the person with special needs, if they do not have the expertise, they can hire professional advisors. Another option is to appoint a financial institution to serve as trustee or co-trustee with a family member. Do not appoint a corporate trustee without meeting with their representatives first.

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 the individual’s life as both an instructive piece and for the professionals’ input as well.

Yes, it is critically important. If grandparents leave assets to a child that does not survive them, it typically goes to that child’s children. If one of these children has special needs, the grandparents assets could result in the loss of benefits and the government taking all or part of the inheritance as a payback.