The Quiet Fight for Better Lives

Working to give adults with disabilities a brighter future

According to the Centers for Disease Control and Prevention, nearly four percent of American children have been diagnosed with intellectual or developmental disabilities including autism, Down syndrome and cerebral palsy, among others. These kids are entitled to a variety of services through the public school system no matter the severity of their condition. However, once they graduate from high school and enter their early 20s, much of that public support disappears. 

Families may spend years waiting to enroll in underfunded government programs. Some adults struggle to find opportunities for a meaningful life, and fear what the future holds as they age. 

Thankfully, there are people in our community who have devoted their lives to helping adults with intellectual and developmental disabilities find opportunities, fulfillment and most importantly, hope.

Tresi Weeks / on Legal and Estate Planning

Plano attorney Tresi Weeks has dedicated her law practice to helping adults with special needs and their families plan for the future. The difficulty of estate planning for this community became clear to her when she served as the trustee for an adult with a disability, and realized that she didn’t know how to distribute money without jeopardizing the individual’s government assistance.

“I contacted a bunch of lawyers and nobody knew how,” she said. “That’s when I realized that I’ve got to learn this area of the law.”

Much of the confusion stems from the fact that adults with disabilities are eligible for a monthly $750 Supplemental Securing Income (SSI) stipend as well as a variety of Medicaid programs. However, if that person has more than $2000 in resources (including bank accounts, life insurance, cash or other assets that could be converted into cash), that person may be cut off from those benefits.

To avoid this scenario, Tresi helps establish special needs trusts which do not affect a recipient’s eligibility for public assistance. These trusts also protect individuals with disabilities from being financially taken advantage of, a scenario that unfortunately is not uncommon.

Of course, estate planning for people with disabilities involves more than just setting up trusts. Tresi said one of the most pressing needs is identifying residential options and transition plans for when parents die or are no longer able to care for their children.

“What I don’t want to see is parents passing away and the child losing their parents, losing their home and having to go live with strangers,” she said. 

Tresi helps parents set up guardianships or find less restrictive alternatives. If guardianships are necessary, she helps identify a future candidate. In some cases, Tresi works to set up child support agreements and ensure that payments go to the special needs trust. She also helps parents plan for future financial needs, including setting up ABLE accounts, which allow individuals with special needs to save up to $100,000 with certain restrictions.

“My heart is to help these families. What I want to do is relieve a burden,” she said. “This is a ministry to us – we want to help them in every way that we can.”

Weeks Law Firm Website >

 

Clay Boatright / on Residential Options

Clay Boatright became a disability advocate 15 years ago after his twin daughters were diagnosed with severe intellectual disabilities and autism. In 2011 President Obama appointed Clay to an advisory committee to help families affected by developmental disabilities. Today he serves as chairman of the state Intellectual and Developmental Disability System Redesign Advisory Committee (IDD-SRAC). Clay also runs his own special needs consulting group, disAbility Advise.

“The biggest concern that we have is for more people with developmental disabilities to get the kind of services they need,” he said.

Many of those with disabilities rely on Medicaid programs to help them get by.  Funding does not come close to meeting demand, and many people wait 15-17 years to receive certain services. “We need to get the state legislature to fund those slots,” Clay said.

One glaring need is the lack of residential options. The situation in Plano is especially dire, with skyrocketing housing costs limiting affordable options. Paradoxically, the good economy is also bad for hiring quality caregivers, as many have found less stress and better pay in other fields.

The state has encouraged host family (formerly known as foster family) programs, and provides some financial support to people who care for individuals with special needs. Parents can sometimes be classified as host families for their own kids.

“That works great for a lot of people, but it doesn’t work well for everybody,” Clay said. 

Those with more severe needs are typically the ones who face the greatest hurdles. Many host families can’t accept the liabilities of hosting a person with behavioral issues. The same is true for group homes that may not be able to accommodate their needs.

Clay believes that better solutions can be found through a combination of public, private sector and faith-based programs. He encourages parents of individuals with disabilities to get to know their legislators and implore them to do more.

“Texas is definitely not keeping up with the rest of the country in terms of the level of support we provide our citizens with disabilities,” he said. “We also need to determine what more can be done on the local level.”

disAbility Advise Website >

 

Debbie Wilkes / on Employment and Post-school Opportunities

Debbie Wilkes first realized she wanted to help people with special needs when she was 16. Today her namesake consulting firm helps those with disabilities make their way into adulthood.

“I always say that ‘ability’ has seven letters and ‘dis’ only has three, but we tend to focus on those three,” she said. “We really should focus on what gifts this person has to give.”

During a 30-year teaching career, Debbie often lamented the fact that there weren’t enough options for adults with special needs after they left the public school system. Many had no clear path forward. As a consultant, she strives to help her clients find fulfillment.

“I won’t ever talk about a person without meeting the person and planning with the person – including those who don’t use words or have very extreme behavior challenges,” she said.

Her goal is to establish what is important to the individual, and then find an option that utilizes their strengths and provides safety and freedom from fear while taking into account health issues. In many cases that person is capable of holding a job. The trouble is, companies often won’t take a chance on them.

The Americans With Disabilities Act was intended to prohibit discrimination.  However, Debbie has seen many instances in which the statute has actually been an impediment as employers use lawyers to invoke “essential job function” requirements that exclude people with disabilities.

Some adults with intellectual and developmental disabilities who do find work and later leave to pursue other opportunities also face difficulties. Debbie has witnessed undue suspicion from employers who incredulously ask why the person didn’t just stay at their previous job. “You wouldn’t ask that to anyone else,” she said. 

Debbie often encourages her clients to get involved in activities like church or special interest groups, noting that networking and meeting people is how many people find jobs. It also fosters happiness.

“Having a quality of life means having friends and people you can talk to,” she said. “It just takes an open heart and looking at the giftedness that an individual has.”

D.R. Wilkes Consulting Website >

 

April Allen / on Educational and Vocational Programs

For more than 20 years April Allen has been helping educate adults with intellectual disabilities. She currently serves as the director of programs at My Possibilities, a Plano-based organization that provides continuing education and job placement services to this community. 

“There’s a lot of doubt around their abilities. Seeing people conquer that doubt is probably what’s driven me over the years,” she said. 

April says that her biggest passion is helping those people traverse the gap they oftentimes find themselves in when they leave high school. Limited available services combined with long waiting times for government assistance creates a challenging situation, to say the least. 

“With limited opportunities out there for people with special needs, think of the consequences. It’s often isolation and depression,” April said. 

The programs she helps run at My Possibilities are structured to provide a sense of community that combats those feelings of isolation. Students are offered a vast array of elective options including yoga, photography, blogging, bible study, gardening and cooking, to name a few. There are also vocational class opportunities that help students learn the skills needed to attain and retain a job. 

“It’s a viable workforce that a lot of people don’t necessarily tap into,” April said.

Classes are geared toward the individuals with disabilities, and take into account the diverse levels of learners within the special needs community. Certified special education instructors along with an education program committee have created an extensive overall curriculum program. 

Looking back on her career, April said she is encouraged by the increased awareness of people with special needs that didn’t exist two decades ago. Her dream is a world that is truly inclusive, one in which people with disabilities go to school, work and live in the same places everyone else does. 

“Through all the years of working in this industry, the things that strike me are the resilience of our population and, especially in the State of Texas, the fight that they have had to put up for quality services,” she said. “There’s an army of people that are passionate and dedicated to seeing that improve.”

My Possibilities Website >

 

Gary Moore / on Real World Experience

When Gary Moore’s son was diagnosed with autism, Gary and his wife worried about what would happen to him when he grew up. In 2009 Gary met Dan Selec who also had a son on the autism spectrum. Together they founded the nonPareil Institute dedicated to helping kids with autism who, like their two sons, demonstrate an ability and passion for working with technology.

Non pareil means “no parallel” or “no equal” in French, something Gary says applies to all of his students.  

“People all think that autism is ‘Rain Main’ but there is actually a broad spectrum,” he said. 

Indeed some people with autism lack the ability to speak while others can attend college and thrive. Gary’s son falls in the middle of the spectrum. For example, he is great with computers, but can’t tie his shoelaces and struggles with basic life skills.

At the nonPareil Institute, students learn how to do things like program apps, create video games, design 3D animation and even publish books. 

“We are doing a lot of cool stuff using their proclivity of technology to train them,” Gary said. 

The institute created an intake process that assesses communication skills, level of interest and prior school accomplishments. Those who succeed in the program are usually the ones who have a natural passion for technology and are able to hyper-focus on the tasks at hand. 

“I’ve talked to thousands of families now,” Gary said. “They call from all over the country, and they are desperate because there’s just not a lot out there for their kid.”

Many of these parents are frustrated because their children have useable skills but can’t find work or are stuck in entry-level jobs. While the situation seems bleak, Gary sees hope in other companies. He cites Rising Tide, a car wash in Florida started by another parent affected by autism, as well as a few local bakeries started under similar circumstances. He also commends corporations like Microsoft, SAP, Ernst & Young, Chase Bank and Ford that have started programs to hire workers with autism. Gary hopes that initiatives like these will help raise awareness of what people with autism are capable of.

“They can do productive work if given the right training and accommodations,” he said.

non Pareil Institute Website >

All photos courtesy of the individuals featured.

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1 Comment

  • This article highlights the things that are incredible about Plano and North Texas in all the ways that they could be. I have personally attended events with NonPariel and MPTX and have to say that the work these individuals are doing deserves the utmost respect and support. Way to GENUINELY BE APART OF THIS COMMUNITY.

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