After School - What Next?

By Carole A. Trisler

“Hi, Asa’s Mom! You must be so proud. Your son graduates today!” These words are bittersweet to almost every parent; but to me, that common greeting evoked a high level of apprehension. You see, my youngest son, Asa, is on the low end of the Autism Spectrum. My recurring thought was “What do we do now?” For those of you who are facing this dilemma, there is a plan that will assist you in laying out the future safeguards for your loved one, primarily guardianship beyond childhood and continuing your loved one’s positive environment.

Your advocacy for your child is going to take on a different layer as your son or daughter ages. In addition to staying close with your child’s education team, you will need to consider legal guardianship that needs to be in place when he or she turns 18. This step, should not be taken as a ‘given’ just because you are the parent or custodial guardian. Certain criteria should be weighed. Can my child make money decisions? What about health issues? Is it possible someone may want to take control who does not have the best interests of my child at heart? Should you decide for these reasons that your child needs a legal guardian upon reaching adulthood, steps must be taken before that magic 18thbirthday. The following is paraphrased from the Texas Probate Court website (www.texasprobate.com )

• In Texas, a court supervised administration for a minor or an incapacitated person is referred to as a guardianship. Other states may call it conservatorship. 
• There are two types of guardianship: 
• Guardian of the Person where a person (guardian) is appointed to take care of the physical well-being of the minor or incapacitated person (ward) 
• Guardian of the Estate is when the guardian cares for the ward’s property. 
• The definition of an incapacitated person is an adult who, because of physical or mental condition, is in essence unable to provide food, clothing or shelter for himself, care for his own physical health, or manage her own financial affairs. 
• Because court-appointed guardianship takes away some of the ward’s civil rights, courts are extremely cautious in granting this. It is best to get the assistance of an attorney as most courts will not consider guardianship applications filed by non-lawyers. Incapacity must be proven by precise and compelling evidence which, rightly so, is a very high standard. A certificate from an examining doctor must be signed and dated within 120 days of the application for guardianship. 
• The court will appoint an attorney ad litem to represent the proposed ward. 
• Texas courts usually practice the doctrine of least restrictive alternatives, meaning the guardian is responsible for only what is necessary to protect the ward and/or his property. 

This may seem to be a roadblock in your efforts to do what is best but in actuality, this is a safeguard to ensure the basic rights of the proposed ward, ensuring no one is taken advantage of or mistreated when he or she cannot act for themselves.

• There is a pecking of sorts for who may be considered eligible for the position of guardian. If the ward is an adult, the order appears as below: 
• A person designated by the proposed ward herself (as in cases when a person knows he will become incapacitated in the future from illness) 
• The person appointed by the last surviving parent of the proposed ward 
• The ward’s spouse 
• Next of kin 
• A non-relative 

Any of these people may be rejected by the court if considered unfit or unable to meet the requirements of guardian, so it is not a ‘given’ that the parent automatically fills the post. Again, this is why you need to work with a lawyer to secure the position.

• Both types of guardianship are considered “fiduciary” positions and are held to the high standards required of this trusted position. It is a profusion of responsibility. 
• A bond must be posted in a court-mandated amount to assure the guardian fulfills his duties. 
• The guardian of the person, unless restrictions are applied, is in charge and in control of the person and has the right to have physical possession and to establish the ward’s home (domicile), protection of the ward, the duty to provide for the needs of the ward (food, clothing, shelter, medical needs, etc.) and the power to consent to medical, psychiatric or surgical treatment. An important detail is that guardians must file an annual account detailing specifics to the court and renew the bond each year.

The above is by no means all of the details of guardianship, only an overview. I highly urge you to seek legal counsel prior to the person’s 18th birthdate in order to prepare yourself for this step. For a quick FAQ visit http://texasprobabte.net/faqs/faq_about_guardianships.htm for further information.


A reminder—if your child is a male who is almost 18 years old, you must register him for the Draft. I know it may sound like a minimal detail but it is the law. I was told that should the Draft ever be reinstated, my son will automatically be rejected, however to not register is to break the law.

Ok, so you have secured guardianship. Your job is done, right? No! In Texas, a student with special needs can stay under the umbrella of the public schools until age 22. Some may receive a certificate of completion whereas more often in this century with careful planning and execution, the student qualifies for and is presented with a genuine high school diploma. You may think there is little difference, but a diploma opens more doors for independence than the paper saying the child participated in an educational program. After this step, things get a little fuzzy, and it often comes down to money and available resources. Depending on this person’s level of ability you may need to consider residential care.

Residential care may call up pictures of state-run institutions where the person is ‘shelved’ or parked in a safe place where they are cared for but not nurtured. This is not the only option, by any means. Your job before age 22, is to research and plan where your young person can reach full potential while still meeting the accommodations and modifications and health needs that arise or may already be evident. This is the fuzzy part. In our case,as Asa was approaching that hurdle of graduation, his funding changed from his home school district to Intermediate Care Facility Funds for Individuals with Intellectual Disabilities (ICF) regulated by Texas Department of Aging and Disability Services (DADS). Although he had been a resident with Autism Treatment Center of San Antonio (ATC) from the age of 13, there were no bed slots available under the ICF funding. We had to move on. I had researched several places in the San Antonio area. The majority understood the mental retardation part of Asa’s condition but were not well-schooled in the Autism component.

However, change was inevitable and so Asa moved. Every six months or so, I touched base with ATC to see if there was space. Two and a half years passed before he was able to return to his familiar and more appropriate surroundings. His future is now set. ATC is his home base.

If residential care is deemed best, then you need to consider many aspects. You will need to be familiar with what type of funding is available—this is seriously different from his public school days, where the home district is responsible for most costs incurred (busing, education, assistive technology, etc.) Residential programs in Texas are funded in a variety of ways. The best source of information is the Texas Department of Aging and Disability Services (DADS) (http://www.dads.state.tx.us/).

As with most decisions, the ones you as guardian make for your child may be a source of angst and worry. Self-doubt cannot be a paralyzing agent in this process. Life goes on. Your child will, with the grace of God, outlive you. So it is in the best interest of both you and your loved one to have a plan of action, even if it has to be changed or adapted through the years.

I close with some wise words from Chantal Sicile-Kira, The Autism Advocate. Her article appeared in Psychology today (Feb 9, 2015)

“The reality is that parents can create a successful future for their child. But it doesn’t just happen overnight – it’s about having a dream and a plan and partnering with others.” 

I urge you to take her words to heart. Do not assume ‘the system’ will do it for you. Now, go forth and advocate. You know you can.


Resources:

Chantal Sicile-Kira
https://www.psychologytoday.com/blog/the-autism-advocate/201502/your-child-autism-life-adult-planning-ahead

Texas Department of Aging and Disability Services
http://www.dads.state.tx.us/

Texas Department of Human Services
http://dhs.sd.gov/dd/division/funding.aspx

Texas Probate Courts
http://texasprobabte.net/faqs/faq_about_guardianships.htm