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Long Term Planning & Special Needs Trusts: Frequently Asked Questions

Long term planning and special needs trusts can be complicated topics. Below are some answers to Frequently Asked Questions written by Stan Pearson, a Financial Services Professional from New York Life (NYL). NYL has been a leader in both the insurance and investment industry for over 167 years. Here Stan provides information on best practices to help those with autism as it relates to long term planning. To learn more about Stan and New York Life and what they do, check out their site here

1. What are some benefits my family can look for?

Benefits can be available at the local, state and federal government levels; also, private assistance may exist. Every agency is different, every state is different...and, sometimes, differences exist from county to county. But keep in mind that there are several rights and benefits that apply across the nation. For example, every child with autism in the United States has the right to a free and appropriate public education through age 21 (and older in certain states), and this is required to include Transition Services for young adults with autism. 

For purposes of receiving certain types of federal government financial assistance, such as Supplemental Security Income (SSI), an individual will be treated as an adult at age 18. Even if your family is receiving SSI for a child with autism under the age of 18, you will need to go through a re-determination process to maintain SSI benefits as an adult. There are also a number of government financial resources that may be available to adults with autism spectrum disorders or to fund programs that these adults may participate in, including Supplemental Security Income (SSI), Social Security Disability Income (SSDI) and state Medicaid Home and Community Based Services (HCBS) waivers. Talk to a local special needs planning attorney or call your local agencies (such as Social Security and Medicaid) to discuss the benefits available to your child. There may be special steps that you need to take in order for your child to qualify for benefits. 

2. Does my child with autism have assets of his or her own?

If he/she does, the ownership of these assets can substantially impact your child's ability to qualify for benefits. In some situations, this may not seem like a "bad thing"--your child has the resources to provide for his/her medical, housing and other supports. However, there are some special needs facilities and housing opportunities that ONLY accept Medicaid or Social Security Disability. So, it is important to understand how ownership of assets by a child with autism can affect benefits and how to resolve that concern. For more information, you can refer to the Goodwin Procter LLP Legal Guide for Autism Speaks.

3. What will happen if I cannot physically take care of my child with autism?

The care of a child with autism may be a lifelong endeavor. However, if you are the child's primary caretaker, then consideration must be given to your age, disability, death, etc. You may have other family members (perhaps siblings of the child with autism) who can assist in his/her future care, or you may need to look to other housing alternatives. Explore those options now while there is no urgency to make a decision and create a long-term plan.

In order to be able to make medical and financial decisions for and adult with autism, a family member will need to apply for either limited or full guardianship and/or to be a conservator of the person with autism. To become an individual’s legal guardian or conservator, contact the Office of Public Guardian in your state. Typically the process will include completing an application and all parties (i.e., the family member seeking guardianship and the individual) attending a hearing represented by separate legal counsel. 

4. What will happen if I cannot financially afford to take care of my child with autism?

The health care, therapy and housing costs of a child with autism can be extremely high over the course of his/her lifetime. You should explore all of the various benefits and assistance available to your child. If your finances permit you to save or invest assets that are to be allocated to your child's care, or to set up a Special Needs Trust, then you may be able to explore some additional options with your financial advisor.

Other benefits to which your child with autism may be entitled include Supplemental Security Income (SSI), which is available to people whose disabilities prevent them from gainful employment. In order to be eligible, an individual must not have greater than $2,000 in countable resources and must have a limited monthly income. At age 18, the income and resources of family members are not counted even if the individual continues to live at home. Disabled Adult Child Benefits are also possible through Social Security, and Medicaid benefits should be explored.

Families should also explore the use of ‘generic’ programs designed to help those with low incomes. There are programs to help pay for utilities, food, transportation and other costs associated with running a household. Visit Disability.gov/benefits to review assistance afforded to individuals with disabilities. The ‘Other Assistance Programs’ section includes information about programs that can help children and families with food, cash assistance and other needs. Visit Benefits.gov to find out about other federal and state programs.

5. What can I do be ensure that my child's financial needs will be addressed if something happens to me?

This is a question that all parents and caretakers have about their children--not just children with autism. If you have a child on the spectrum, however, your Last Will and Testament should be designed to ensure that any inheritance left for that child is appropriately allocated, maintained and administered under the terms of a "Special Needs Trust." A Special Needs Trust is a trust that is designed to supplement, but not supplant any government or private assistance that the child is receiving. In essence, the trustee is given complete discretion to make distributions to the child that will not interfere with his/her benefits. 

6. Can I set up a Special Needs Trust during my lifetime?

Of course. In fact, many parents or caretakers of children with autism establish Special Needs Trusts during their lifetimes because this provides a vehicle for lifetime gifts and/or inheritances. Establishing the trust during your lifetime allows you to specially allocate funds, transfer them to the trust and ensure that they are available as and when needed. If you establish a Special Needs Trust during life, you may not need to create one under the terms of your Last Will and Testament; however, you may want to be sure that the two legal documents are in sync with your goals and objectives for your child with autism.

7. If I create a Special Needs Trust for my child with autism, can others make gifts to the trust?

Absolutely. The Special Needs Trust provides a receptacle for gifts from other family members or loved ones. Remember, ownership of assets by your child with autism should almost always be avoided--so family members and loved ones should avoid transferring gifts directly to the child, naming the child as a beneficiary of assets or leaving assets to a child under the terms of a Will or other trust document. If you have a Special Needs Trust in place, these caring family members and loved ones can simply leave or gift assets to the trust. It is important for your family members and loved ones to understand the importance of the trust and the ability to add assets to it.

8. Who will serve as the trustee of my child's Special Needs Trust?

This can be a difficult decision. During your lifetime, if you feel that you are able to administer this type of trust for your child with autism, you can certainly serve as trustee. If you do not feel able or you become unable to do so, you may need to look to third parties. Whether you or a third party serves as a trustee, the trustee should consider hiring legal counsel to help guide them through the distribution process. You do not want to inadvertently disqualify your child for benefits. There are many professionals and organizations that can assist, including attorneys, professional trustees, and private and governmental agencies designed to assist in these matters. One "good" source will be the special needs attorney who assisted you in drafting the trust document. They are typically familiar with the help available to trustees of Special Needs Trusts.

9. What types of assets are generally used to fund a Special Needs Trust?

There is no hard and fast rule as to the type of assets that should be placed in a Special Needs Trust. Obviously, however, the trustee needs cash dollars to pay for medical and health care expenses, living expenses, etc. Many parents or caretakers will purchase life insurance through the trust. The life insurance insures the life of the parent/parents/caretakers and ensures that liquid monies are available in the future to help provide for the needs of the child with autism.

10. Where do I start to find the information and advisors I will need?

Starting with advisors who specialize in special needs planning is a must. An attorney, a financial advisor, an organization...even a government agency. Talk about the goals and objectives for your child's current and future needs and ask for advice on how to create a sound, long-term plan.