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

Dreaming Big

by Anna Hundley, ATC Executive Director

Over my many years of serving as Executive Director of the Autism Treatment Center, many people have asked me to describe a typical day at ATC. My response is the same – the typical day at ATC is definitely not typical. We recently had one of those typical, not typical days. Let me share with you.

Several of the teenagers in our residential program attend public school. This means that for eight hours out of the day, they are under the supervision and direct support of other dedicated professionals and community partners who contribute to the individual’s success. It also means that just like any parent who has children away at school all day, you never know what situations they can get into.

Well, at the end of the school day, these individuals got on the bus to come back to ATC. So far, this is a typical day. Then, one of the students said he needed to use the bathroom before the bus took off. He was allowed off the bus and told to return quickly. This is where the not typical day really starts.

The individual did go to the bathroom but didn’t return to the bus. Security cameras show him exiting the school and walking in the opposite direction. As soon as it was obvious to the bus driver he hadn’t returned, ATC was called and made aware one of our individuals was unsupervised. The school officials assumed he was lost and assured ATC he would be quickly located.

I got the phone call in the middle of an Executive Management meeting of the board of directors where every agenda item was of extraordinary significance. Still, I told the board this situation was more important and I drove to the individual’s house hoping to find him walking home. For the next several hours, ATC staff, local police, school district staff from the safety patrol, and several district volunteers looked for the young man. Finally, a phone call came in that he had been positively identified and was on his way back home. I was relieved he had been found safe and was out of harm’s way.

But then I learned he had been found at the Dallas/Fort Worth airport - almost 30 miles away – attempting to purchase a ticket. I told the police officer he had the wrong individual and I wouldn’t believe it until I saw him. Well, he was correct and had the right person.

The young man is nonverbal so piecing together this puzzle might forever remain a mystery. But since then, I’ve been reminded just how clever and resourceful some of our students can be. Without any money, he was able to get to the DART station and take the blue line to downtown Dallas. Then, he was able to transfer to the red line and take the train to DFW. I’m still convinced that had he not been identified, he would have found a way to get to his original destination – Sydney, Australia.

Believe me, this is a terrifying incident and ATC has already taken appropriate measures to work more closely with our community partners about the wandering tendencies of individuals with autism. And now that the young man is back under our direct care and supervision, I can take a step back and find the humor in this.

I share this story with you for two reasons. First, to give a very concrete example of how ATC’s programs and services are supported by several community partners – school districts, our first responders, and dedicated individuals in our community who look out for our individuals. We could not do this important work on our own. Second, to bring awareness to the fact that while autism can affect the ability of an individual with autism to communicate, it doesn’t mean they don’t dream big. The Autism Treatment Center provides the support for individuals to appropriately harness their interests and talents that build their independence through our life-changing programs.

You can help us continue to make these programs and services available by contributing to our Center. September 22nd is North Texas Giving Day, an online giving event for people across the nation (and the world!) to come together to raise as much money as possible for North Texas nonprofits on one day. In seven years, North Texas Giving Day has pumped $119 million into the North Texas community. In 2015, $33 million was raised through more than 118,000 gifts benefiting 2,020 nonprofits.

Not only will each donation to ATC of $25 or above be matched until a challenge grant of $5,000 has been met, bonus funds will be added to your donation. In the next three weeks, I hope to earn your contribution by highlighting the children and adults with autism whose lives are changed by your generosity.

Learn more at https://northtexasgivingday.org/npo/autism-treatment-center

Achieving a Better Life Experience (ABLE) is Now Texas Law

By Anna Hundley

I am pleased to report Governor Greg Abbott has signed the Texas ABLE Act into law. If you haven’t been following this legislation, the acronym stands for Achieving a Better Life Experience. I am excited for the families who will now be able to better plan for their child’s future financial needs to help cover the high costs of education, housing, transportation, medical bills, and other expenses related to their disability.

This is a very big step in providing new tools to help Texas families touched by autism to invest in their child’s future while paying for costly day-to-day needs. Families will be able to add up to $14,000 per year toward the ABLE accounts with a much-higher overall cap to pay for expenses. Once the Texas Comptroller’s office establishes the rules and regulations for the tax-free ABLE accounts, Texas families begin to set aside funds to pay for day-to-day expenses without jeopardizing an individual’s SSI or Medicaid benefits.

It has been a long journey in getting this much-needed legislation passed. On the federal level, I would like to thank Congressman Pete Sessions for his leadership in representing the Dallas area. As a father to a son with special needs, he understands the real struggle families sometimes face.

In the Texas Legislature, it was truly a team effort from all members to get this legislation passed. This legislation also showed that when it comes to helping families with disabilities, there are no party labels. In the Texas Senate, the vote was unanimous. In the Texas House, the vote was 138-1. I am proud of all Republicans and Democrats who put aside partisan politics for the good of Texas.

At the Autism Treatment Center, we are fond of saying that our programs Change Lives and Build Futures. ABLE accounts will provide ATC with more resources to help us fulfill our mission to “assist people with autism and related disorders throughout their lives as they learn, play, work and live in the community.”

As more information is made available about setting up ABLE accounts, we will gladly share with you to use in your decision-making process to best meet future financial needs for your family.

Here to Help

When BB was 22 years old she moved in to a residential home at the Autism Treatment Center.  Today BB is 52 years old and she still lives in a home at ATC. Her mom and dad, who are retired, live close by and BB frequently goes home for weekends and holidays. BB has a special room at her parent’s home with many items she loves to collect. She also has a special room at ATC with her treasures. BB recently got an iPad and loves using it for entertainment and learning new skills. On most visits home BB is calm, cooperative, and happy.

However, the holidays are a very stressful time for her. She will raise her voice and ask the same question over and over. With coaching she can usually reduce her anxiety to an acceptable level. This past Thanksgiving though her anxiety was so intense that she started to seriously harm herself. Her parents could not get her calmed down, so BB’s mom called the ATC nurse and Case Manager at 10:30pm Thanksgiving night. They, in turn, called the Residential Coordinator and House Manager of BB’s home. The Coordinator and Manager went to BB’s family home and worked with her until 1am.

They were able to help her calm down, go to bed, and finally go to sleep. The next day, BB’s mom came to the Center and stopped by my office to tell me how grateful she and BB’s dad are that “staff are willing to come and assist in the middle of the night and that they always seem to know just what to do.”

BB remained at home until Sunday evening when she returned to her ATC home without any additional problems. I am so proud to be the Executive Director of ATC for many reasons, but this situation illustrates “Community Services” at its pinnacle. The team at ATC is dedicated, passionate, skillful and has years of experience working with and teaching children and adults with autism.

Meet Daniel.

Daniel first arrived at the Autism Treatment Center a month past his third birthday. Daniel was diagnosed with autism and the symptoms of his autism were affecting his family's everyday life.

Leaving the house to run errands, going to appointments or family outings became very challenging due to his tantrums and anxiety when he had to leave his room. His social awareness of others was very minimal and he did not acknowledge other people nor did he want to interact with his sisters when they played. It was a challenge developing a strong sibling relationship. If other peers got too close to him he could become aggressive and hit them to keep them away. He did not show affection to his family and did not want to engage in family activities. Daniel's diagnosis of autism led his parents to ATC's Department of Assistive and Rehabilitative Services (DARS) program and he was enrolled in a 20 hour/week program consisting of one on one Applied Behavior Analysis Therapy (ABA) and monthly parent training.

ATC's therapists began working with Daniel to increase his social skills, independence, and communication. Beginning by teaching Daniel to notice other people and peers, each session reinforced and increased his motivation to engage with others. His social skills began developing. He was taught to ask for toys and items he wanted from his peers and he learned how to play with toys, pretend play, and role play. Daniel learned how to ask his peers to play and his parents began to see these skills at home as he started to interact with his sisters. He wanted to be a part of their world!

Daniel learned skills to increase his independence as well. He became potty trained and he learned how to brush his teeth, wash his hands, and dress himself. During potty training he would actively seek out others approval running to therapists for hugs proudly yelling "I did it!" He would want to call his parents and tell them the good news. This was an ecstatic moment for everyone on Daniel's team. The boy who came to ATC wanting to sit by himself on the floor, avoiding contact with therapists and peers, and who cried and screamed during transitions became a distant memory.

Daniel now initiates conversations with his peers and helps the therapists teach other kids to interact. He will spontaneously sit down at snack time and ask the other kids what they are eating, ask if they like it, and tell them what he has that day. When a new student arrives he says hello and asks them their name.

Because of his accomplishments, Daniel has recently graduated from the Autism Treatment Center's DARS ABA program and is now attending a general education kindergarten class. His teacher was able to observe and be trained by the Autism Treatment Center's team through the DARS program. 

Daniel has made a smooth transition to the general education classroom. He plays with his sisters and wants to do everything they do and does not want to be left out of any family outing. His parents are thrilled with the progress he made and the foundational skills he developed with the help of the ATC/DARS ABA program.  They are now looking forward to his continued success!

Meet Jalen.

Jalen was diagnosed with autism at age 3.  He attended a DISD elementary school and was placed in the Special Education programs where he displayed typical development and hit all his milestones on schedule despite his autism diagnosis.

As he grew older, he began to display different behavior. Jalen often attended his older brother’s athletic outings, but was no longer able to attend as he had the tendency to run away from his parents. When Jalen hit the teenage years his behavior worsened and he began to be a danger to himself and others. He began to display challenging, destructive, and violent behavior. At school, Jalen began to fight his school peers and other adults. He damaged school property and was a danger to himself and others around him.

During the 2009-2010 school year, DISD officials contacted ATC for placement in the ATC Educational Program for Jalen. His behavioral and academic needs were not being met with the local school district. The day ATC’s Educational Coordinator and Behavior Analyst visited Jalen at his school, Jalen’s behavior grew out of control. While waiting in a classroom with his teacher, Jalen started to throw lunch boxes, computers, and anything he could get his hands on. For her own safety, the teacher quickly left the room and found four athletic coaches who could come into the room and subdue Jalen. Once he was under control, the Educational Coordinator was able to do an assessment of his needs.

Jalen was found to be in need of an autism-specific curriculum and support system to replace his challenging behaviors with positive behavior.  

After Jalen's parents, Chiniqua and Greg, visited with ATC’s Program Director, Dr. Garver, and Educational Coordinator, Ms. Hoover.  They felt enrollment in ATC’s Educational Program would provide their son with the curriculum and support system he needs. According to Jalen’s parents, they “just wanted Jalen to experience happiness again.”

At first, Jalen had no real understanding of his placement at ATC. However, after time, he became familiar with his teachers, behavior therapists, and other staff. More importantly, his behavior changed. He no longer is a threat to himself and others.

Jalen’s individualized service plan was made with involvement from his parents, teachers, behavioral therapists, and DISD educators. His immediate goal is to control his disruptive behaviors and provide for stabilization. Long-term goals include working on Jalen’s preferred diet to work on nutritional habits and for Jalen to learn a vocational skill in the area of cooking or industrial trades.

Four years after enrollment, Jalen has made long strides in controlling his behavior and he enjoys learning.

From Shoelaces to Braces

by Anna Hundley, ATC Executive Director

While serving as Executive Director of the Autism Treatment Centers of Texas since 1982, there have been many challenges along the way.  As you might guess, most of them have to do with funding critical services for children and adults in our program.  I’ve been around long enough to know that budget issues are never going away and must be tackled head on.  Kicking the can down the road only gets costlier.  That’s the issue the Texas Legislature is dealing with now.

For over twenty years, the Department of Family Protective Services has placed children with autism and challenging behaviors with ATC.  Currently, 29 children are enrolled in ATC programs for direct-care services.  From community-based group homes to one-on-one autism-specific therapies, ATC takes care of their every need providing everything from shoelaces to braces.

Often times, once a child is placed at ATC for early-intervention services, they turn into lifetime services.  Many of the kids placed at ATC by FPS are still with us, but now in Adult Services.  The continuity of services and familiarity with staff members has only contributed to their increased independence and overall quality of life.  To provide a lifetime of quality care, however, requires money.  ATC cannot shoulder the entire cost. 

State reimbursements fund approximately 80% of the entire cost of providing an array of services for each individual.  Private fundraising, wise stewardship of limited resources, and an engaged Board of Directors help us sustain the programs while keeping them affordable to families in the community seeking our services. 

An August 1 article in the Dallas Morning News reported a state contractor for protective children’s services pulled out of a $30 million a year contract due to problems with adequate funding.  Stories like this are not unusual.  While it takes a significant investment for state agencies to appropriately support children, they deserve nothing less than safe and comfortable housing.  When the 84^th Legislature convenes in Austin in January 2015, they will decide important state-wide issues, including agency budgets.

As the costs of providing children under FPS custody increase, state leaders will be forced to deal with this issue.  After all, state budgets reveal our priorities.   I remain positive that children removed from their home for neglect, abuse, and trauma will receive the proper funding for them to be successful in their lives. ATC is committed to providing every opportunity for the children enrolled in our programs to learn, play, work, and live in their community.