Decision Time in Action: Ellie is Turning 18

It‘s that time. Ellie will be 18 on May 17, 2011. Where did the time go? My beautiful special needs child is soon going to be the age of majority, considered an adult with all her own rights! It is amazing how much responsibility is given to individuals when they turn 18, whether they are special needs or not. They can vote, sign contracts, go to war, marry, sign their own Individualized Education Program (IEP) and make all types of decisions independently of their parents. If you have set up a Uniform Transfer to Minor Account (UTMA) for your child, special needs or not, legally the money now belongs to the child. At 18, young adults can leave home and we cannot stop them; as parents, we technically do not have control over our children anymore.

I know that when I was 18, I was nowhere near mature enough to understand the complexity of most adult decisions. To think that these same rights apply to special needs individuals is downright frightening. Research shows that the typical brain does not fully develop until the age of 25, and sometimes as late as 30 — so what does this mean for our special needs children? Depending on the level of disability, an 18-year-old special needs individual may have the maturity level of a 10-year-old child.

Given the sudden autonomy that greets individuals when they turn 18, parents of special needs children must be well aware of two important factors:

1)   Supplemental Security Income (SSI)
2)   Guardianship

Supplemental Security Income (SSI) is a federal program overseen by the Social Security Administration (SSA) that helps adults (and even children) with disabilities and very low incomes to pay for food and shelter.  It is a needs-based program; to be eligible for this government benefit, a person must be a disabled U.S citizen or legal alien who meets certain requirements and has income and resources (assets) below a certain limit.

SSA has its own definition of “disabled.” Basically, an adult must have a severe disability that has lasted or is expected to last at least 12 months, or that is expected to result in death. In addition, the disability must prevent the person from doing “substantial gainful activity” (SGA), meaning the person is incapable of making more than $1000 per month in 2010. A blind person does not need to meet the SGA requirement.

The income and resource (assets) limit is very important to understand. When a person with disabilities turns 18, he or she must not have more than $2000 in resources (assets) in his/her name. Resources include cash, bank account balances, stocks, bonds, investments, whole life insurance, retirement accounts and property.  However, such an individual may own a home, car, life insurance with no cash value (term insurance), certain burial funds, a special needs trust and property used for a job or business. 

The income limit really depends on the type of income they receive. “Unearned” income (Social Security Checks or pensions) must be less than $694 per month in 2010. “Earned” income (wages or earnings before self employment) must be less than $1432 per month before taxes in 2010.

The most money a person can receive from the SSI program is $674.00 per month. This is supposed to pay for food and shelter only. If a parent or another individual pays for food and/or shelter for the person receiving SSI, the $674.00 will be reduced by 1/3 for food and/or 1/3 for shelter. 

Once an individual qualifies for SSI, he or she will also qualify for Medicaid, which serves as that person’s health insurance. Medicaid varies per state. In many states, Medicaid automatically comes with SSI eligibility. In other states, you must sign up for it. A person can receive as little as $1.00 from SSI to get Medicaid. If a person has other insurance, Medicaid will become secondary, covering some costs the primary insurance does not. Sometimes, qualifying for Medicaid is far more valuable than the SSI benefit itself.

Many people ask how a person can possibly live off $674 a month. The answer is that there is a trust called the Special Needs or Supplemental Needs trust. This type of trust does not jeopardize the SSI government benefit or Medicaid, and can supplement the SSI for all the items an individual needs that are not food or shelter. This can be a stand-alone trust or a testamentary trust (in one’s will), with the beneficiary being the person with special needs.

It is very easy to confuse the SSI program with Social Security Disability Income (SSDI). SSDI is another SSA federal program that provides income to individuals with disabilities. SSDI is not a needs-based program like SSI. It is available to people with disabilities no matter how much money they earn or have. SSDI is available to any disabled worker, the disabled worker’s widow(er) and the disabled worker’s adult children who have been disabled themselves since childhood. When an individual qualifies for SSDI, he/she also qualifies for Medicare, which is different than Medicaid.

The other critical issue to consider when an individual with disabilities turns 18 is the decision regarding guardianship. Guardianship is a legal relationship created when a court appoints an individual to be a substitute decision maker for another person.

There are two types of guardianship: 1) of the person and 2) of the property or conservatorship.

Guardianship of the person by definition is just that — a guardian is in control as if the person were still a minor, making all necessary personal and medical decisions. If a young adult with special needs runs away and a parent has this type of guardianship, the police can be summoned to find the young adult and bring him/her home. Without guardianship of the person, you cannot ask the police to retrieve a person who is legally an adult.

Guardianship of the property or conservatorship deals with financial decisions, giving control of the disabled individual’s money to the guardian. This prevents an individual with disabilities from entering into inappropriate contracts or giving his/her money away. If the person did enter into a contract, in most all cases it would be null and void.

Guardianship can be a costly endeavor in terms of both money and time. There are less restrictive ways to have control without guardianship. For example, regarding medical decisions, parents can implement a HIPPA Authorization and a Medical Directive on behalf of their young adult with special needs. This allows the doctors to share all information and medical records with the parents, and it allows the parents to continue to make the important medical decisions. Regarding guardianship of the property, the parents can have joint checking accounts and be the representative payees.

So, as Ellie’s mother, what am I going to do when my Ellie becomes an adult in May? First, we will definitely apply for SSI. I will gather all the important documents that prove she is special needs and has been her entire life.

The second issue of guardianship is a little more complicated. To be her guardian means restricting her independence. However, who is really mature at the age of 18? Ellie has had two kidney transplants, and medically I feel I still need to be in control. Therefore, I will most likely pursue guardian of the person (Ellie) so I can still be in charge of Ellie’s medical care. However, rather than become guardian of the property, I think I will become her representative payee and we will share a checking account. This way I can teach Ellie how to be financially independent and work within her budget without relinquishing total control to her. 


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