Transition to Adulthood

Before we sailed Arabella long distances, there were some things we had to do. We upsized the rig; rigging holds up the masts. (Arabella was a cutter ketch, which means she had two masts and, with everything flying, as many as 5 sails. If you’re into this stuff, you can distinguish between a ketch and a two-masted schooner because on a ketch, the mast most forward on the vessel is taller than the one behind it. On a schooner, the mast most forward is shorter than or the same height as the one behind it. There. Now you can harbor-watch just about anywhere from an informed perspective.)

We upsized the rig. We installed solar panels and a wind generator, replaced the flares, tested the EPIRB[1] and added chain to the anchors. Some voyagers remove their appendix before casting off, to prevent appendicitis at sea. We didn’t go that far—our adventures began sufficiently coastal that the helicopter medivac insurance we bought would suffice.

There were a million things to attend to, but they all had two things in common: they were easier to do before the adventure began, and once completed, these preparations would enhance our quality of life and safety.

As we prepare to cast our kids with autism in their adulthoods, it’s worth going through a similar process. Here are 5 things Steve and I did before Jason and Joshua moved out, and you should too:

1) Switch from Children’s Case Management to Adult Case Management, and switch from Children’s Services to Adult Services sooner rather than later.

Case Management justifiably confuses a lot of people. First of all, there are too many case managers, and they don’t always talk to each other. As consumers of case management services, we hear the term “case manager” and assume it means one thing. When I hear “airplane pilot,” I figure that person flies the plane. When I hear “auto mechanic,” I expect that’s the guy who fixes the car.

Case management is not that precise. When Jason and Joshua were four, we had three case managers.

• Child Development Services (CDS): CDS is responsible for the early education of children up to age five, and is part of the Maine Department of Education. The Department of Education is charged with meeting education regulations, including the Individuals with Disabilities Education Act (IDEA), and Section 504 of the 1973 Rehabilitation Act; together these offer strong protection that all children, regardless of disability, receive a Free Appropriate Public Education (FAPE).
• Medicaid: Medicaid is health insurance, funded through taxes collected by the federal and state governments. In general, Medicaid is for the most financially vulnerable, or the “poor.” In many states, individuals who are not “poor” but who have significant medical needs can also receive Medicaid benefits through waivers, such as the Katie Beckett Waiver.[2] Jason and Joshua were determined eligible for Medicaid through the Katie Beckett waiver, and we had a Case Manager who oversaw their Medicaid-funded services.[3]
• Nursing: One of the Medicaid-funded health benefits we accessed was the services of a Certified Nursing Assistant (CNA). The CNA was supervised by a Registered Nurse, who provided case management as well.

By law, the case management services from each of these sources cannot be duplicative. Each case manager focuses on issues related to their area of expertise and, in a perfect world, together they produce overall care coordination. The question then becomes, who exactly is the care coordinator for an individual? In my experience, it is by default the primary caregiver, which means that the quality of care coordination depends on the skill set of the caregiver.[4]

By the time J+J turned 18, I figured our collection of child case managers had had their shot.[5] Some families hang on to children’s services as long as they possibly can, because they have been taught that services in the children’s system are entitlements, while services in the adult system are based on eligibility. That’s true, but that distinction doesn’t necessarily mean that the services to which your child is entitled are a) available in your location or b) what you really want as you look to adulthood.

I think you should seek an eligibility assessment for adult services as early as your state will permit it. Maine allows that assessment once someone becomes 17, so that’s what we did. The assessments indicated Jason and Josh could receive adult services once they turned 18.

Shortly after their 18^th birthday, we found a knowledgeable adult services case manager and switched the boys to adult case management. In Maine, you can access adult case management but also continue to utilize children’s services until the individual becomes 21, which we did, for a while anyway. Adult case managers specializing in transition-to-adulthood youth are knowledgeable about both worlds, and can help smooth the way between the two.

2) Update or Obtain Assessments. These include the Vineland Adaptive Behavior Scales, or similar assessment that measures an individual’s performance of personal and social activities typical of people their age, and necessary to be self sufficient. The Vineland measures communication, daily living skills, socialization, motor skills and maladaptive behaviors.[6]

If your child has maladaptive or problem behaviors, have a Board Certified Behavior Analyst (BCBA) do a functional behavioral assessment (FBA) of them.[7] An FBA will provide guidance about the reasons an individual engages in problem behaviors or, more accurately, what the function(s) of those behaviors are. Having this information will guide you and your transition team in creating the lifestyle and supports your child needs to be safe, healthy and happy.

3) Create a Function-based Positive Behavior Support Plan (PBSP): We create PBSPs every day, whether we think about it that way or not. If you want to avoid junk food, stock the kitchen with healthy food. If you’re trying to quit smoking and you need something to do with your hands, take up knitting. If your kids whine in the grocery checkout for candy, choose a candy-free aisle.

By following PBSPs that focus on day to day adaptations to prevent the challenging behavior, skills the individual can learn that are more acceptable than the problem behavior, and how people supporting the individual should respond to escalations leading to the problem behavior, you should find that the flat-out danger zone behaviors are decreased considerably. Notice I said by following the function-based PBSP. At the risk of stating the obvious, having a plan isn’t the same thing as following it. I can’t tell you how many diet plans and log sheets I’ve developed in my lifetime that by themselves simply have no effect on my weight loss whatsoever. The deal is, I have to follow it.

4) Stabilize Medications: This is a controversial area, but after raising two kids with autism, I am a firm believer in Better Living Through Chemistry. That does not mean turn all our kids into zombies, nor to teach them to pop pills whenever the going gets tough. But the fact is many kids on the spectrum display more stable behavior when on the right medication, which makes them more available for learning.

I’ve had the honor of mentoring some younger colleagues at work, and inevitably it comes up that there “just isn’t enough time in the day to get it all done.” I remind my colleagues that everyone from Einstein to Warren Buffet to Mother Theresa were given the same 24 hours in a day. It’s all about how you use them. If your child’s brain is addled by insufficient serotonin or misfiring synapses that pharmacology can help, why not take advantage of this?

We have 183,456 hours between when our children are born and when they turn 21. Personally, I don’t want any of those precious and surprisingly few hours to be wasted as a result of brain chemistry imbalances or other internal states that will make my kids unavailable for learning.

To be clear, I am not saying that meds replace behavioral interventions. They can complement them. And you certainly shouldn’t turn to meds if there isn’t a glaring reason for them. As with almost anything, there are risks and side effects associated with medications; so not unlike taking an informed risk to drive a car, have a child or sail to the Bahamas, meds need to be monitored and managed.

If your child takes medications, or you and your doctor feel a course of medication might make your child more available for learning, try to get this stabilized and consistent before your child jumps out of the nest. There will be enough new things going on in your child’s new life without medication adjustments being part of it.

5) Remove Those Wisdom Teeth: Remember I said some voyagers have their appendix taken out to prevent appendicitis at sea? The last thing we want is our adult kids (some with severe communication challenges) to suffer from impacted wisdom teeth once they grow up. In addition, dental care is often covered by Medicaid for children, but not for adults. The older we get, the trickier it can be to have wisdom teeth removed. Get that done as soon as you and your dentist determine the time is right, so your poor baby can go through it with you and recover in your loving arms. While you’re at it, is there anything else medical unique to your child that should be attended to? Now is the time.

As with going to sea, there are a million things to take care of when transitioning your child to adulthood. When that child happens to have autism, there are a few extra things to consider as well. Start early, start now.

Contact me if I can help.

[1] Emergency Position Indicating Radio Beacon; transmits a distress signal when activated.

[2] Katie Beckett or similar waivers are not a special form of Medicaid; they are a form of eligibility. Once an individual is found to be eligible through a waiver, s/he has access to the same array of Medicaid benefits as anyone else.

[3] For more information on Medicaid and waivers, check these out: Understanding Medicaid Home and Community Services Waivers, http://aspe.hhs.gov/daltcp/reports/2010/primer10.htm; Catalyst Center State-at-a-Glance Chartbook on Coverage and Financing for Children and Youth With Special Healthcare Needs: http://www.hdwg.org/catalyst/online-chartbook/

[4] Thankfully, as health care undergoes transformation, the important role of one overall professional care coordinator has been identified, and in some cases is even now paid for as a part of health care. This will take time to become the norm, but we’re heading in the right direction.

[5] To be fair, once I figured out the continuum of CMs I had to interface with and why, some of them were very good at what they do. Some, not so much.

[6] http://www.come-over.to/FAS/VinelandTest.htm

[7] Disclosure: I’m a BCBA. While you don’t have to be a BCBA to do an FBA, BCBAs receive very specific training in the functions of behavior, and how to do strong behavioral assessments and function-based treatment plans based upon the FBA findings.