This article is based on a conversation by Kim Hegwood, managing attorney for Your Legacy Legal Care, and Cynda Green, Pathways to Adulthood Transition Coordinator for Texas Parent to Parent. For the full conversation on this topic, view the Life Happens podcast episode with Kim and Cynda here.
As a law firm that has worked with many families with children with disabilities, we see a lot of those children aging out of school. Many times, after these children can no longer use their schools as a resource for help managing their disability, the parents wonder what to do next. It is hard to know what options are out there and it can be a huge struggle for many families. We find that a lot of parents have trouble transitioning their children with disabilities from school to adulthood; they may be completely overwhelmed and have no idea where to begin. It is difficult to access resources, and if they do not have a plan in place, they may not be prepared at all.
Cynda Green works with families who have children 14 and up, with the biggest population being 17 to 22 as these families in particular are faced with many important decisions that need to be made. Cynda has found that families are looking for someone who can guide them as accessing resources, not knowing what is out there, and not knowing how to put a plan together can be a huge barrier.
When should parents start this plan?
The sooner parents start planning, the better. Schools typically start talking with families when their child with a disability is 14. However, the sooner you can start processing it and start putting some long-term plans into place, the better the outcome will be. Cynda says, “It’s never too early and it’s never too late. It’s what we tell families all the time. We take them right where they are.” The reality is that families struggle to process this transition planning even when the child is 14. Most families are just trying to get through each day, so it can be overwhelming when the school starts the conversation about the child’s transition plan.
Most parents cannot imagine being without the school and other supports they have. Cynda recommends, “Take one day at a time and gather the information as you can. When families are ready, they will pick their head up. Eventually they will have to be ready, so just keep supporting the parents and keep giving them information. They just need somebody to understand how overwhelmed they are and to keep gently nudging them forward.”
At Your Legacy Legal Care, we often see parents with children who have disabilities who need to obtain a guardianship because their child is 17 and about to turn 18. When discussing the planning options with these families, they tend to have not thought about the options. Many families assume something would occur and just fall into their laps. This is not the case, and it can be difficult to know how to take the first steps.
What specific actions can parents take?
When the child is 14, the school will start talking with the family. They will start putting transition goals into the IEP. When you look at those transition goals, try to look at the long term. Typically, those IEP meetings are focusing on increments, but when you start looking at transition planning, you need to look past that, when they are out of school. You think about how you can use the remaining school years effectively, and how to use the support from the school before you no longer have access to it. You need to process where your child is at in their journey: what are their strengths, preferences, interests, and needs? Make sure these are all addressed in their transition goals – it can also help when you are looking at employment.
Many families think, “Well, the school is not going to stop its services today.” According to Cynda, “That’s called denial. It’s a happy place to sit, but the reality is those services are going to go away. So make sure you’re getting the best out of them. And honestly, there are so many great transition people in the school districts. Every school district has something called a TED (Transition and Employment Designee). They know about work, resources, and employment. There is a wealth of information. So find those people on your child’s campus, and discuss your child’s dreams, goals, and what you can work towards.”
Children can often stay in school until they are 22. But what happens to those kids that are 22 and up?
Cynda explains, “Well, that’s the scary world. That’s the ‘black cliff’ that we talk about in transition. When families don’t have a plan in place, and those school services are gone, a lot of those kids end up sitting at home on the couch.” There are many resources out there, but it is not easy to put them together. That is why, the sooner you start planning and figuring out what resources are out there, the better the outcome is going to be when the school services are gone.
What resources are there for people with disabilities and how do we access them?
Some of the resources include SSI, Medicaid waiver programs for long-term care services and support, and the Texas Workforce Commission. “But the reality is,” Cynda says, “None of those services work together easily.” Families are faced with having to learn multiple systems and how to navigate them.
Medicaid is the key to long-term care services and support in Texas. It is crucial to make sure your child has access to Medicaid. Cynda says, “Some families don’t know about the Medicaid waiver programs, which are going to offer some supportive employment, employment systems, and attendant care that would help the transition into adulthood. We talk to families all the time and nobody has ever told them about it. You child could be 18 or 19 – but we have a 15+ year waitlist in Texas for those services.”
Families typically struggle to figure out what else is out there as they try to piece together the different resources. We believe employment is crucial, and everybody should have the opportunity to work, whether it is volunteering, competitive employment, or self-employment. However, by the time the child reaches the age of 18 or 19, families want to be done planning and attending meetings because they are so tired. Cynda says, “I speak with some families whose child has met the academic requirements to get a certificate of attendance and move into the 18+ transition program, but the family is too tired. And my question back to them is, ‘Oh, well what is your plan for your child when those school services are gone?’ and they say they don’t have one. I tell them they might consider it, because it will buy them a little more time to really figure out what services are out there and how to access them in a way that is right for their child.”
How can the Texas Parent to Parent Pathways to Adulthood program help?
“Pathways to Adulthood was funded about nine years ago. We realized that our kids are getting older and transitioning is a hot topic because families are overwhelmed. We offer one-on-one phone calls now during the pandemic. All of our trainings have become virtual. We offer trainings on the emotions of transition, school, and legal planning. We talk about how to do long-term financial planning, how your child can live, work, and build a network of support, and everything else that parents are facing. In February of 2020, we received a grant from the Texas Council for Developmental Disabilities to open our transition center of Central Texas. This is where we can do more intensive one-on-one meetings with families. We go through a transition inventory and look at what they have done, what they need to do, and what resources can help. We set goals at the end of the meeting and follow up with the family. We know how hard it is, and we want to make sure the families don’t get stuck.”
“I think one of the things that we really need to bring to the forefront is that everybody on our team is a parent. We all have children and we have been trying to navigate the systems too. I often laugh because people think I have it all figured out because I work at Texas Parent to Parent. Really, our team is figuring it our along with the parents. The parents are not alone in the journey; we are there, and we are supporting them.”
To learn more about Texas Parent to Parent, visit their website at www.txp2p.org or call (737) 484-9045.
At Your Legacy Legal Care, we meet with many families to protect the future of their children with disabilities and ensure they will be eligible to receive their benefits through the years to come. If you need assistance planning for your child with a disability, give us a call at (281) 218-0880 or contact us here today.
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