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When Your Child With Special Needs Grows Up

Rogelio Ramirez was born with cerebral palsy; he was premature and weighed two pounds at birth. Doctors told his mother, Manuela Ramirez, that he would likely live for only one month. She was scared but thought that with enough hope and love, her son would make it through.
Fast-forward 24 years. Rogelio gets around well in his wheelchair, and he can speak and type with two fingers on a computer. His deficiencies are physical more than mental. Although every day was difficult, he made it through childhood and his teenage years. He even made it to his senior prom.
But then he turned 18, and as parents with children of special needs often say, “The school bus stopped coming.”
“I was broken by my sorrow,” Ramirez says of her son’s birth. “You dream your baby will be healthy and have no complications. It was very important to me that my son live. It was very, very hard. I cried a lot. But when I cried, I was doing nothing to help my son. So I needed to get into action.”
When a child with special needs is born, the days and nights are long. But, as with typically developing kids, the years are short. Parents should be thinking decades ahead during a time when getting through the dinner hour seems a trial.

Nationwide, children with special needs age out of public-school systems no later than their 22nd birthday. Some age out at 18 if they’re high-functioning, like Rogelio. Then what?
Do they need a job coach? Can they work independently? Will they live at home? What will their social life look like? With whom will they spend their holidays? Can they be left alone in your house, or do you (or someone) need to be there with them at all times? Can they spend days or parts of days somewhere else?
By now, the parent of a child with special needs is accustomed to being that child’s advocate, and it is often an arduous task. But that role ramps up even more when the educational and social services structure they’ve grown to rely on transitions from child-centered to adult-centered. A parent must now try to imagine what this young adult’s life can look like. You can’t shoot too high, but neither should you dream too small.
Possible goals vary with each child and each special need: Is driving a car a possibility? Getting around solo with public transportation? College? A part-time job? Living in a group home? Alone?
So many questions. So much change. So many emotions. So much paperwork.
The bottom line, parents and experts say, is that you need to get on every waiting list possible while your child is young (read: now). You must look beyond your current circumstances – even though your child needs a bath now, has a doctor’s appointment and occupational therapy tomorrow, and you can’t remember the last time you had eight hours of sleep – to try to anticipate the future.
“A lot of families don’t really want to think about the future,” says Philip Bell, individual and family services coordinator at The Arc of Greater Tarrant County. “They already have so much on their plate each day.
“Finally, you think you know just enough, you know the routine, you know how to advocate for your child if she needs more therapy or more of this or that,” he says. “Then they turn 22 and they graduate. Then you have to start all over.”
Preparing for the transition
At age 3, Rogelio spoke his first word: Mama. As he grew up, he started interrupting his parents, sister and brother. He learned English and Spanish.
As he went through the systems in place for children with special needs, Ramirez was right there with him. Everybody knew her at the hospital, where Rogelio had multiple surgeries, and at Northwest High School in Justin, where he graduated at 18.
Ramirez went from knowing her son was in a learning environment every day to the prospect of empty days ahead. She went from the hospitals and doctors she’d trusted and become familiar with since his birth to a search for new doctors who treated adults. While she spent her days motivating and monitoring her son’s educational and medical needs, she didn’t get on any waiting lists for adult services, so Medicaid (not the more helpful Medicaid waivers, explained below) is his only benefit today.
One thing Rogelio never lacked was a cheerleader – his mom. “He finished high school. He went to the prom,” she says. “When he finished high school, he told me, ‘OK, Mom, I finished my school. Now I’m going to stay home and chill.’ I said, ‘Uh-oh. No you’re not.’”
Sarah Feuerbacher, Ph.D., clinic director at SMU’s Center for Family Counseling in Plano, spent much of her career as a clinical director of a local organization with a transitional living program for young adults ages 16 to 24. She’s worked with many parents and older teens like Ramirez and Rogelio. “One of the most anxiety-provoking topics that students had was what would happen to them when they aged out of the system and couldn’t receive the lowered-cost resources or wouldn’t have access to the services that they received through their schools and the state as a minor,” Feuerbacher says.
Federal and state funding are available for services, to be sure. But understanding the requirements for gaining access to them – sometimes even finding them – can cause a lot of anxiety in an already stressful family atmosphere. Sometimes, children end up in solitary situations in their own family or in a group home. Worse, some young adults with special needs become homeless or substance-abuse statistics.
That was not going to happen to Rogelio. Ramirez would be sure of that.
She told her son that he had two weeks after high-school graduation to find a job or continue his education. Was it difficult to enforce those boundaries? Yes. But this kind of motivation – every single day – is what got her son where he is now, she believes. He enrolled at Tarrant County College and studied computer science. He now has a full-time job at Walmart.
Ramirez, a single mom for the past six years, doesn’t sugarcoat the challenges of raising Rogelio and his two typical siblings. A Mexican immigrant, her English isn’t perfect. But she tells Rogelio every day that she loves him and wants him to live up to his potential. Those words found a way into his heart; now he hopes to live by himself one day.
Rogelio’s mom began thinking about the future when her son was very young, as did Philip Bell and his wife. Bell’s daughter, Brandie, has profound disabilities from being deprived of oxygen at birth. Now 33 and still living at home, she is on a waiting list for permanent housing as well as “dayhabs” (places where teenagers and adults with special needs can go for several hours a day, usually on weekdays).
Bell and his wife started working on Brandie’s transition plan when she was 14, which is when Texas public schools begin talking about transition with families of children with special needs. The federal Individuals with Disabilities Education Act (IDEA) mandates that lower-functioning students can stay in school until their 22nd birthday, often transitioning from academic to vocational training.
Bell gets many frantic calls from parents as their children get close to leaving high school. “They have no idea what it’s like to navigate the community or the system, to try to be an advocate for your adult child now for adult services,” he says.
Dreaming of a better future
Around the time Brandie was born, in 1980, places like the Fort Worth State School, a residential facility for people with profound disabilities, started going out of fashion. “My daughter is multiply disabled,” Bell says. “She requires total care. But I want my daughter to live in a community and not in a state institution where she’ll be, for lack of a better term, warehoused. I want her to live in a neighborhood where she’ll get more attention.”
Angela Shannon is program manager for Reaching for the Stars, an Arlington-based facility that works with the people who’ve qualified for services from the Department of Aging and Disabilities Services (DADS). During Shannon’s decade-long career with the program, she’s seen attitudes change about the life young adults with special needs should transition into. “We try to keep our people as active in the community as possible, leading a normal life like anybody else even though they have disabilities,” she says.
Though experts herald these as positive changes, the old attitudes linger. SMU’s Feuerbacher points to a simple Google search. “If you search ‘children with special needs turning 18,’ each and every topic is related to power of attorney and legal guardianship matters, which demonstrates where society’s mindset has been with the special needs population: They are to be managed, they are to be restricted, and they are to be silent members of society,” she says.
This mentality certainly isn’t the case at the nonPareil Institute, next door to Feuerbacher’s SMU clinic. The Institute, founded by parents of a child on the autism spectrum, builds on the technology gifts such young adults often possess and prepares them to become contributing members of society.
Many students from the Institute get jobs using their computer skills, at GameStop and Best Buy, for example. These students were prepared for the real world in many ways, but their lack of skills in team-building, social situations and self-esteem often got them into trouble. “Many of their students had been hired by companies only for them to be very quickly fired because of social awkwardness and even, at times, social inappropriateness that comes from characteristics of the [autism spectrum] disorder,” Feuerbacher explains.
The SMU clinic partnered with nonPareil to create psycho-educational groups built around the unique strengths and challenges of these students. The groups focus on increasing self-esteem and social skills through team-building exercises – and so far they’re yielding results, Feuerbacher says. The founders of nonPareil are thinking about creating similar partnership models nationwide.
Navigating the "system"
The “system” is complicated, especially for adults with special needs. IDEA mandates that every public school in every state begin the transition process to adulthood with an Individualized Education Program (IEP) by the time a child is at least 16; in many states, including Texas, that age is 14.
Programs like The Arc of Collin, Dallas and Rockwall counties and The Arc of Greater Tarrant County offer transition support. Arc programs kick in for students between the ages of 14 and 21 who qualify for IDD (Intellectual and Developmental Disability) services, which are monitored by DADS.
As you will soon learn, transitioning your child with special needs to an adult with special needs involves a rabbit hole of acronyms, services, paperwork, regulations … and opportunities. The DADS website (www.dads.state.tx.us) and the “Roadmap to Understanding Texas Medicaid Waivers” by Imagine Enterprises are thorough sources of information, as are other parents and local services, but here’s a primer:
• State assistance. MHMRs (Mental Health Mental Retardation) are local agencies that work with DADS and the Texas Department of State Health Services. (Metrocare Services in Dallas was formerly known as Dallas County MHMR.) The golden egg of state assistance is the HCS (Home and Community-based Services) Medicaid Waiver Program, followed by the TxHmL (Texas Home Living) Waiver Program.
The Medicaid Waiver Program opens up a world of lifetime services: in your home, outside of your home, respite, dayhab, therapies, dental and medical treatment, help with employment, minor home modifications – whatever is appropriate “ … so the person can maintain himself or herself in the community and have opportunities to participate as a citizen to the maximum extent possible,” according to an explanation on the DADS website.
The “waiver” part of the program refers to the fact that these programs are exceptions to the usual Medicaid requirements. As of April, 105,032 people were on the waiting list (called an “interest list” by the state) to become part of the program, intended to provide services in the home instead of an institution.
The TxHmL Waiver Program also helps adults with special needs stay in their homes, giving supplemental support to programs such as the Medicaid Waiver Program.
• Local assistance. Carrie Parks is program manager of community services at Metrocare Services in Dallas. Like Reaching for the Stars, Metrocare works with people who receive IDD services through DADS.
Metrocare counselors, for example, will come to transition meetings at your child’s high school. “There are resources out there,” Parks says. “It just takes some work to find them. The trickiest piece is finding somewhere to send them while you’re at work.”
The search for such services wears down many families. By the time they dig deep into what MHMR provides, many have dealt with a lot of rejection, stress and lack of support, says Lacey Freeman, IDD services program manager at MHMR of Tarrant County. “By the time they get to us, they have exhausted every option that is out there,” she says.
The goal of MHMR is to keep people with special needs out of institutions and in a community. “We advocate for them in all areas of their life,” Freeman says. “This may be in school, then, when they get out of school, becoming an adult, wanting to live on their own and having a voice in their medical care.”
Reaching for the Stars pursues similar goals for people with special needs ages 13 and older who are part of the DADS Medicare Waiver Program. On weekdays, the 20 or so participants at the dayhab socialize, do arts and crafts, participate in exercise and sports, work on goal setting and attend skills classes: how to cook, how to wash clothes, how to grocery shop. In addition to the dayhab, Reaching for the Stars has two group homes with three residents each.
“Anything to make their life easier and give them the independence to say, ‘Hey, I can do this for myself,” Shannon says. “We’re here to support them in whatever it is they’re trying to do.”
• National assistance. The key national component of the alphabet puzzle affecting your child with special needs is IDEA, which mandates that every public-school system support them through their 22nd birthday. For your adult child, the most common program is SSI (Supplemental Security Income). When your child is under age 18, his or her eligibility is based on the family’s income. Once your child turns 18, it is based on his own income. Like paperwork for unemployment benefits, SSI paperwork is monthly. If your adult child works, some of the money he makes could be deducted from his SSI check.
Beyond the acronyms, the services and the options (or lack thereof) is your child, hopefully living the best life he or she can live. Back at Ramirez’s house, Rogelio is saving money from his job at Walmart to get his own apartment. His mom will miss him, but that is the end result of a lifetime of pushing him to realize his potential, she says.
Just as she did that first difficult month of his life, she believes he will make it – with and without her. “One day I will die,” she says. “And what will happen to him? He will be OK. He is so motivated. And he is happy.”
Published November 2013