ABLE Act: An Early Christmas Gift

 

This week Alex and many other Americans like him who have developmental disabilities received a wonderful early Christmas present. The passing of a new law known as the ABLE (Achieve a Better Life Experience) Act of 2014 will allow parents to save money for their children who have disabilities without fear of losing benefits. The purpose of this act is to help and encourage families to save funds for their loved ones with disabilities to help provide for their needs. These funds would supplement any government disability funding without fear of losing these important resources. Up until this time, parents have been discouraged from establishing savings accounts for their children with disabilities because these children cannot have their own assets totaling more than $1000 or $2000, depending upon government agency regulations, without fear of losing disability benefits, such as Medicaid or Social Security’s Supplemental Security Income (SSI).

First introduced in 2008, ABLE was promoted by parents of children with special needs as a program similar to those for parents wanting to save money for their children’s college funds. The bill in its current form was introduced last year on February 13, 2013, and was sponsored by Representative Ander Crenshaw, a Republican from Florida. The bill overwhelmingly passed in the U.S. House of Representatives on December 3, 2014, with a vote of 404-17. As a bipartisan effort, Senator Bob Casey, a Democrat from Pennsylvania, and Senator Richard Burr, a Republican from North Carolina, sponsored the bill in the U.S. Senate. This week, on December 16, 2014, Alex’s twenty-third birthday, the Senate also overwhelmingly passed the ABLE Act with a vote of 76-16. On Friday, December 19, 2014, President Obama signed the ABLE Act into law. Not since the enactment of the American with Disabilities Act (ADA) of 1990 has there been such significant legislation enacted to benefit people with disabilities until the signing of the ABLE Act this week.

Essentially, ABLE amends the Internal Revenue Tax Code to allow the use of tax-free deferred savings accounts for individuals with disabilities. Families may use these funds—up to $100,000—to cover expenses for education, housing, transportation, and medical expenses. Under the law, the disability must have been diagnosed before the age of 26, and the child must receive Supplemental Security Income through Social Security. Previously, parents were discouraged from putting aside financial resources for their children with disabilities, fearing that their children would lose important disability benefits. In addition, parents had to make sure their children had limited resources of their own. To ensure that their children would not lose benefits by inheriting assets, parents had to make certain that their estates would not go directly to the children with disabilities but to special needs trust accounts instead.

Because we only recently became aware of the problems of Alex having his own financial resources eventually, we have always set aside money in savings with the idea that he would need money in the future. Knowing that Alex can have limited finances in his own name, we have made certain that his savings account never has more than the maximum the state will allow him to have without losing his benefits that pay for his therapies and any supports he may need in the future. However, Ed and I have also saved money for Alex’s future needs that the ABLE Act will allow us to provide for him securely. As parents, we have a responsibility to take care of our children the best we can, and the ABLE Act permits us to provide for our children with disabilities without penalizing them or us for doing what is right, saving money that can be used to meet their needs. Along with our many blessings we have enjoyed this past year, we are thankful that the American politicians saw the needs of families raising children with disabilities and passed the ABLE Act into law, which will benefit so many families now and in the future.

“And this same God who takes care of me will supply all your needs from His glorious riches, which have been given to us in Christ Jesus.” Philippians 4:19

Parent or Guardian

Recently, I read two excellent blog entries written by mothers of children with autism who explain the process involved in being named their children’s legal guardians once they reach the age of eighteen.  Both mothers candidly describe the heartache they feel in taking legal action to make sure they will be able to make critical decisions for their children who cannot make those decisions for themselves. As Kim Stagliano explains in “Autism Sucks: And Then I Die”: “We have to petition a judge to take away her rights as an adult so that we can make her medical, legal and financial decisions because thanks to her autism, she is not able to make safe choices for herself.”

Similarly, Liz Becker shares her internal conflict about becoming her adult son’s guardian in “Guardianship and Autism,” noting, “In order to become the legal guardian and conservator for my autistic son, the court had to first find him incompetent to manage his own affairs. It was (and still is) a very emotional process. It is something that I had to choose to initiate because I knew Matt needed me to do it--but that doesn’t mean I took it in stride. It literally took years of thoughtful contemplation to even begin the legal process.”

Although guardianship laws may vary somewhat from state to state, the State of Indiana’s website explains the process quite clearly under the Family and Social Services Administration page: “Guardianship is an important consideration when young adults with developmental disabilities reach age 18. It is important for parents to realize that under the law everyone is considered to be an emancipated adult (their own legal guardian) at age 18, regardless of their disability. If the parent believes it is necessary for them to gain or maintain guardianship of their adult child after the age of 18, this can only be done through a court proceeding, which may be lengthy and expensive. Any action to establish guardianship of an adult with a disability must be filed in the probate court of the county of residence of the person for whom guardianship is being sought. Filing for guardianship is generally done with the assistance of an attorney, and includes a petition, followed by a hearing to prove that the person is incapacitated (unable to serve as his or her own guardian). Guardianship by another person by definition restricts that individual's rights and freedoms as a citizen, and should therefore not be entered into without serious consideration, including exploring alternatives which may better suit the individual's needs while still providing legal protection.”

Some of these rights that can be restricted once a disabled adult is deemed incapacitated or incompetent and requiring a legal guardian include the right to obtain a driver’s license, the right to own property, and the right to vote.  If parents wish to have some control over their disabled adult child’s affairs but not obtain guardianship, they may have legal papers drawn naming them as health care representatives and/or giving them power of attorney. In addition, Social Security may name a parent as a representative payee to oversee the distribution of disability benefits; similarly Medicaid may also name a parent to act as the adult child’s health care advocate. However, at times the adult with a disability may be required to sign his or her name on paperwork.

Although Ed and I have discussed and debated the pros and cons, we have opted not to seek legal guardianship of Alex at this point. Certainly, I respect the decision of those who have sought legal guardianship of their adult children and can imagine what a difficult decision that must be. When Alex was hospitalized last spring, we realized for the first time that we could no longer make some health care decisions for him since he was an adult. Therefore, we quickly had an attorney draw up legal papers naming us as Alex’s health care representatives so that we could make decisions regarding his medical care. I would recommend that parents of children with autism have this paperwork in place and ready when they turn eighteen instead of being caught unprepared in an emergency, as we were. We had assumed that as Alex’s parents, we would be able to make medical decisions for him, but we were wrong. Now that we have the legal papers naming us as Alex’s health care representatives, we take copies with us to every medical appointment so that we can be directly involved in Alex’s health care.

When we were filling out the countless forms last spring to obtain disability benefits for Alex, the question arose over and over as to whether we were Alex’s legal guardians. I found this somewhat surprising because none of my friends with adult children who have disabilities have sought legal guardianship for them. Nonetheless, I asked one of Alex’s caseworkers how common parents having legal guardianship is for adult children with autism, and she said that those whose parents could afford the legal fees typically obtained guardianship.  Since Social Security has named me as Alex’s representative payee to oversee the spending of his disability benefits, and Medicaid has approved me as his health care representative, we don ‘t feel the need at this point to seek legal guardianship. The government allows us to manage his finances and benefits, and the health care representative legal papers permit us to make decisions regarding his medical needs. For everything else, Alex is capable of signing his illegible signature, and he seems proud that he can do that for himself.

With the upcoming elections, Alex eagerly awaits his first time to vote for the President. As he has in every election since he turned eighteen, Alex considers the candidates and issues before making his decision and exercising his Constitutional right to vote. Just as I have in the past, this year I will again help him apply for an absentee ballot, for which he qualifies as a disabled adult, and he will proudly mark his ballot at home. To think of denying Alex his right as a citizen of the Unites States and his joy in participating in one of the rites of adulthood reconfirms our decision not to seek legal guardianship for him. In addition, the eternal optimist in me hopes that someday he will be more independent and not need us to make decisions for him. Relying on faith, we pray that having him declared incompetent will never be necessary, and we know with God all things are possible, including healing that would allow Alex to enjoy fully the freedom we cannot deny him at this point.

“Rabbi,” His disciples asked Him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

“It was not because of his sins or his parents’ sins, “ Jesus answered.  “This happened so the power of God could be seen in him.” John 9:2-3