As a parent with a child diagnosed with disability, you become faced with uncertainties, obstacles and opportunities that you never thought you’d have to encounter. Many parents focus on their disabled child’s here and now, without giving much thought to the future. If the disability limits progression of skills that allow for gainful employment and the ability to take care of oneself as an adult, it’s important that the parents and/or caregivers plan for the future. Most children with a disability in fact, become adults with a disability. A Special Needs trust is a way for parents or caregivers to set aside money for the future care of their loved one living with a disability while protecting government benefits (Supplemental Security Income and Medicaid) that are crucial in providing the medical and income necessary to supporting the individual. These trusts are supposed to supplement the benefits a disabled person receives from the government — paying for additional services or equipment not otherwise covered — but not to supplant them (Sullivan, 2010). The government does offer medical and financial assistance to adults with special needs through programs such as Medicaid and Supplemental Security Income to offset the high costs of care. However these programs provide the bear minimum. Medicare is a health insurance program for U.S. citizens at least 65 years old, or those aged younger than 65 years who suffer from certain disabilities. This program was developed on July 30, 1965 when U.S. President Lyndon B. Johnson passed the Medicare Benefit legislation as an amendment to the Social Security Legislation (History of Medicare – A Quick Look at How it Got Started | The Medicare & Medicaid Center, n.d.). Supplemental Security Income (SSI) benefits for the low income and disabled were first introduced during in 1974 when the House of Ways and Means Committee issued a comprehensive review of the disability programs under the Social Security Act ("History of Supplemental Security Income | Lawyers For SSI," n.d.) In order to qualify for government benefits such as Medicaid and Supplemental Security Income (SSI), the disabled individual must have minimal personal assets – no more than $2,000 cash. Unfortunately, these programs, at best, support a person at the poverty line. If parents can afford to supplement government benefits with additional funds, they usually do so. But where many parents go wrong is not properly setting aside funds for when they are no longer here. For example, one common mistake parents and family members make is holding assets such as bank accounts in the child's name or naming the child as the beneficiary of wills, insurance policies or retirement accounts. A special needs trust holds money or property that the grantor leaves for the beneficiary’s benefit ("Special Needs Trusts -- The Basics | Nolo.com," n.d.). These trusts are drafted so that the funds will not be considered to belong to the child in determining eligibility for public benefits. Special needs trusts are designed to pay for items or services that are not covered by public funds. Examples are certain types of medical treatments and therapies; fitness or health programs; recreational, vacations, cultural events and transport expenses. If the trust is sufficiently funded, the disabled person can also receive spending money to use for quality-of-life enhancing expenses. Parents should seek out a qualified attorney or financial planner to assist with trust setup. Three key questions need to be considered. Who will help me set up the fund, Who will be the trustee and How will the trust be funded.
Legal fees for setting up a special needs trust cost about $1,000 to $5,000. One way to save on costs is to open an account with a pooled trust. As the name suggests, this type of trust "pools" the funds of multiple disabled beneficiaries so that the trust can be managed by a single trustee for efficiency of both scale and management. The trustee is a nonprofit organization that internally maintains separate accounts for each beneficiary, yet can invest ("pool") the funds with a common purpose and overall larger asset value. With the pooled special needs trust there is no need to name (and even find) successor trustees and there are minimal start-up costs due to the use of standardized trust documents. As with the other types of special needs trusts, the trust funds can be used to pay for items and services to enhance the standard of living . A major difference with the pooled trust vs. other types of trusts is that upon the death of the disabled beneficiary, any funds remaining in the pooled trust account either remain in the "pool" to be used for the general benefit of other disabled beneficiaries of the trust or paid back to the state's welfare department. The toughest part of Special Needs Trusts is administering them. Regardless of the type of trust, money from them cannot go directly to the disabled person. Doing so could disqualify the person from government benefits. Families must designate a Trustee and an advocate . The trustee manages and invests the funds for the trust and makes disbursements that are for the sole benefit of the beneficiary. The advocate is designated by the family and is generally someone close to the beneficiary who understands the grantors wishes and the beneficiary’s needs.

Setting up a Special Needs trust is a good idea as government benefits may not be enough to maintain your child in a place or condition you would want them to be in or that they could afford on their own. Also it’s not clear in this day and age that government benefits will continue. Nothing is promised and having that sense of extra financial security provides ensures the best quality of life possible. Seek out a qualified attorney or finanicail planner to assist. Who will help me set up the fund, Who will be the trustee and How will the trust be funded. References
Sullivan, P. (2010, November 5). The Advantages and Burdens of Trusts for the Disabled - NYTimes.com. Retrieved from http://www.nytimes.com/2010/11/06/your-money/06wealth.html?_r=0
The History of Medicare – A Quick Look at How it Got Started | The Medicare & Medicaid Center. (n.d.). Retrieved from http://medicare-medicaid.com/medicare/the-history-of-medicare-a-quick-look-at-how-it-got-started/
History of Supplemental Security Income | Lawyers For SSI. (n.d.). Retrieved from http://www.lawyersforsocialsecurity.com/supplemental-security-income/history-ssi.php
Special Needs Trusts -- The Basics | Nolo.com. (n.d.). Retrieved from http://www.nolo.com/legal-encyclopedia/special-needs-trusts-30315.html