And what you need to do to be ready

Turning 18 is a huge milestone for most teens. It opens up a world of freedom and opportunities. But, for kids with special needs, that 18th birthday can really rock their caregivers’ world.

If you’re the parent or guardian of a special needs teen getting close to that 18th birthday, here are the most important things you need to know, both to protect your child and to ease their way into the adult world.

Healthcare: Your child now has rights, including the right to privacy — from you.

If you’re anything like me, you’ve invested countless hours over the past 18 years in managing your child’s healthcare. So you may be shocked to find out that, when your special needs child turns 18, HIPAA says that their doctors can’t talk to you anymore. Once, I was waiting in a psychiatrist’s office with my autistic son, and I heard the receptionist tell someone that she couldn’t even schedule an appointment for her son because he had turned 18 since his last visit.

There are actually more exceptions to HIPAA’s privacy rules than I realized when I first started investigating this. But just because a provider can share information with you doesn’t mean that they will. Many stick to the strictest reading of the law to protect themselves legally. Some doctors will take a more liberal interpretation of the law if they’ve been working with your family for a long time and understand your child’s limitations. But you can’t count on that, and it’s really not fair to your child’s doctors to expect it.

Fortunately, you have a few options available to you. They all have their pros and cons, including cost and whether or not they require involving the court system, so it’s important to consider your options well before your child turns 18.

Guardianship and/or conservatorship

If your child is completely incapable of making decisions about their own healthcare, you may want to pursue guardianship and/or conservatorship. Both of these arrangements restrict the typical rights and freedoms that come with reaching the age of majority.

In most states, both arrangements require extensive legal processes, including confirmation of incapacity. Some states may carve out specific areas of incapacity while leaving some decisions to the individual. In some states, “guardianship” refers to making personal decisions, while “conservatorship” is reserved for financial decisions. Other states combine the two.

Power of attorney

If your child is not legally incompetent but could still benefit from your guidance in making adult decisions, power of attorney arrangements could be your best bet. Most states recognize two types of powers of attorney:

• Healthcare power of attorney: A healthcare power of attorney (called a “healthcare proxy” in some states) is empowered to make decisions regarding the individual’s healthcare, including everything from routine care to life-and-death decisions.
• Durable power of attorney: A durable power of attorney gives you the right to handle the individual’s financial affairs, including the management of any government benefits.

That’s the legal stuff. Purely from a parenting perspective, there are a couple of other things to consider. First, power of attorney doesn’t mean that you have to make decisions for your child. It just means that you can — and it lets you do so without jumping through a bunch of privacy hurdles. It’s a great way for you and your child to work together to hone those “adulting” skills.

Second, either power of attorney requires your child’s cooperation. If your child signs (assuming he or she has the capacity) the required documents, there’s usually no need to involve the courts.

However, my child, who has high-functioning autism, refused. He wants our help, but he wasn’t willing to give us the power to override his decisions. So we had to move on to another option.

HIPAA authorization

As I wrote above, my son, who falls on the pathological demand avoidance autism profile, didn’t want to hand over control. But he doesn’t want to manage his healthcare by himself, either. For us, the answer was simple: HIPAA authorization. He’s already signed a blanket HIPAA authorization form, which I’ve scanned and uploaded to my phone. Some providers may require their own forms, and it will save time and hassle if you get your child to sign these in advance.

Out of everything I discuss here, your child’s healthcare may be the most important. Many caregivers are so used to directing their child’s healthcare that it never occurs to them that things change based on the date on the calendar. Please, please have this figured out ahead of time.

Government benefits

SSI vs SSDI

We decided not to pursue disability benefits for our child. However, when I was researching “what to do when your special needs child turns 18,” navigating these two programs was always at the top of the list.

I’m not even going to attempt to explain the differences between the two programs. The following SSI vs SSDI chart is from the Social Security Administration’s Disabilities site (for some reason called The Red Book?), but please visit the page itself for other important information.

Vocational Rehabilitation

Vocational Rehabilitation is a joint federal-state program designed to help people with disabilities find and keep meaningful work. If your child has an IEP, you’ll probably hear about this as part of the transition services that begin at age 14.

My son — true to his nature — refused these post-secondary transition services. (Primarily because they included aptitude tests and other surveys that he considers unnecessary and a waste of time — a mortal sin in his world). As I mentioned earlier, he knows exactly what to do and the training he needs to get there, so now that he’s 18, he can approach it as an adult outside of the school system. He’ll be able to tell the counselor his chosen career and talk about how she can help him get there without having to jump through the school-mandated hoops.

Don’t get me wrong. I highly recommend beginning this process through your IEP meetings starting at age 14. But if your child won’t cooperate, or if it just isn’t a good fit, you can always contact your local Department of Vocational Rehabilitation on your own.

Vocational Rehab has a number of tools to get special needs young adults where they want to go. For my child, that means putting him in touch with employers hiring in his desired field and coaching him on work skills. The employers, in turn, get tax benefits for providing work opportunities to people with various disabilities.

For my son, and probably for many autistic teens, those coaching sessions can make the difference between success or failure on the job. For example, not too long ago, my husband asked, “Hey, want to help me with this for a minute?” My son innocently replied, “No.” When I explained that my husband wasn’t really asking, he was flummoxed.

“If he was telling me to do it, why didn’t he just tell me to do it?”

It’s one of those little autism social idiosyncrasies that you don’t always think about until they slap you in the face. And he keeps asking me about it — “So if my boss asks me if I want to do something, he’s really telling me to?” — so it’s clear he still doesn’t really get it. He also likes to prove he’s smarter than everyone else, which rarely goes over well with employers. That’s the sort of coaching he needs.

Other services offered through Vocational Rehabilitation include:

• Counseling
• Training
• Transportation
• Personal care assistance
• Rehabilitative technology services
• Job placement
• Post-placement job support services
• Independent living support services

Check with your local office for more information. But I’ve found Tennessee’s website to be among the best of state websites for just about anything, so you can start here if you want to learn a little more before you pick up the phone.

Other “adulting” steps to take when your special needs child turns 18

Some of these depend on your child’s abilities; others apply to almost all kids turning 18:

• Get a state-issued ID: Even if your child is not going to be driving, he or she will need a state-issued ID (my son has one that’s only an ID, not a driver’s license) for many things, including applying for government benefits.
• Register for the draft: In most cases, males with disabilities are still required to register for Selective Service at age 18 (especially if you intend to apply for government benefits). But there hasn’t been a draft since the Vietnam War and, if there ever were another draft, a medical screening would be one of the first steps.
• Register to vote: If your child has the capacity to vote, help them register.
• Research your options for your child’s 529 account, if you have one. You may have started a 529 college savings account for your child before he or she was diagnosed with a disability. Even if your child won’t be attending college, you still have several good options for using that money. First, keep in mind that it’s not limited to four-year colleges. It can also be used for community colleges, vo-tech schools, certificate programs, etc. Second, the funds can be transferred to siblings who will be attending college. Finally, the funds can be rolled over into the disabled child’s ABLE account (see below).
• Set up a checking account: This is especially important if your child will have a job and/or receive government benefits. If you’re not sure your child is ready to handle finances independently, you can set up a joint account. Just be sure to consider the liabilities first. I was a co-owner on my father’s account so I could help with his finances, and, while he’s been deceased for years, I just had to pay a collection agency almost $200 dollars for an overdrawn account that I thought was closed.
• Practice “activities of daily living”: Activities of daily living include things like personal hygiene, shopping, cooking, cleaning, doing laundry, etc. — all of which will be especially important if your child will be living independently or in a group home. And keep your child’s specific quirks in mind. My son, for instance, is literal to the extreme and doesn’t like it when things don’t work they way they’re supposed to. If he ever starts driving (he’s capable but just doesn’t want to), one of the things I’ll have to cover is what to do if he comes upon the scene of an accident. I’ll need to teach him that, if a police officer directs him to stop on green or go on red, he needs to do it without argument.

Long-term plans

Most of our kids will outlive us, and that’s why all parents need a will, whether their children have special needs or not. For parents whose child will always need assistance, that means some tough conversations about who will provide that assistance when we’re gone.

Because let’s be honest: As much as we love our kids, caring for them takes a lot of work. (My husband and I went for 15 years without as much as a weekend away because there was no one we felt we could ask to keep our son.) It’s one of those dark, ugly things we don’t like to talk about, but it’s true, and it’s a lot to ask someone else to take on. That’s why it’s important to have those conversations long before you think you need it: The person you ask to care for your child needs time to think through exactly what it means.

Moving on to more formal plans, here are some things to consider:

• Write a “letter of intent” for the caregiver you’ve chosen: While not a legal document, you can use a letter of intent to outline how you would like your child to be cared for. This letter can describe their strengths and weaknesses, likes and dislikes, routines, doctors, medications, financial resources, etc. It can help preserve your child’s normal lifestyle as much as possible.
• Set up an ABLE account: ABLE (Achieving a Better Life Experience) accounts allow people with disabilities to build financial resources without risking their government benefits as long as they’re used for qualified disability expenses. There are a lot of hoops to jump through on this one, as well as a few drawbacks, so please read the details about ABLE accounts here.
• Establish a special needs trust: Setting up a special needs trust can help you make sure your child has the necessary financial resources without jeopardizing government benefits. It also helps your surviving family members avoid things like probate, estate taxes, etc. Since I’m neither a lawyer nor a financial planner, I’m not going to cover any more details. Instead, let me refer you this resource on financial planning for families with a disabled child.

Update: Navigating that first job

My son just started working at one of those doggy daycare places, and so far it’s going great! But I did grease the wheels a little. Is it helicopter parenting? Probably…or maybe drone parenting, because I try to work behind the scenes. But he’s not quite ready for adulting yet, and as long as his boss is up for collaboration, I see nothing wrong with it. (And, just for the record, I’ve had absolutely nothing to do with my 16-year-old’s job.)

Here are a few things I did that you might want to try, too:

I laid the groundwork ahead of time.

We’ve boarded our dogs there for years, and I floated the idea of my son working there a while back. So he wasn’t taken by surprise when I brought it up again.

I timed it just right.

I waited until almost the end of the summer, when college students are heading back to school and employers are anxious to fill those spots.

I handled the paperwork.

This was just a matter of prioritizing battles. Getting him to do it would have been like pulling teeth, and I put a lot more value on the work experience than on paperwork experience.

I had an honest talk with the owner about my son’s strengths, weaknesses, and idiosyncrasies.

If your child has any quirks that are likely to show up at work, it’s better to give everybody a head’s up. My son, for instance, is very rigid when it comes to keeping things in their appropriate boxes.

Before COVID, I would drop him off at school as soon as the doors opened so he could do his homework — because school work belongs at school, of course. Moreover, I was a bit worried about this particular job, because our dogs’ barking drives him nuts. When I asked him about it, he said, “That’s completely different. Dogs are supposed to bark there.” (And, knowing how his logic works, that made perfect sense to me.)

Getting back on track, he was supposed to complete some online training on dog behavior — at home. Even though the training is paid, which I thought would motivate him, it wasn’t long before I started hearing the same grumbling I had always heard about homework. So I texted his boss and suggested that he include the training in my son’s schedule so he could do it onsite. He agreed, and so far it’s going great.

I told the owner about the tax incentives he may qualify for.

My son’s boss wasn’t aware of the tax incentives available to employers who hire people with disabilities. So I provided him with the link to our state’s site and to the federal site. I also provided him with the contact information for my son’s case manager at our state’s Vocational Rehabilitation agency.

I’m keeping the lines of communication open.

Now that things are moving along, I’m trying to back off. But my son’s boss knows he can contact me if there are any problems. And, bless his heart if he didn’t just text me to let me know that one of his managers was impressed with the progress he’s making. Music to this mama’s heart!

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