9 Tips for Navigating the Process of Guardianship


From Cheryl Swope | October 27, 2016 | For Special Needs

I found little help when we pursued this for our twins (boy/girl, both with autism, mental illness, ADHD, & learning disabilities), so I share these tips here.

A caveat – this is not legal advice, nor will this apply in every state or for every child.

In our case, our twins sometimes appear “higher functioning” to people who meet them; yet both need great care and 24/7 supervision. When they turned 17 we began the process, as advised.

You want to finish before the 18th birthday. This can take time.

Every step takes time, but you can do this.

1. Find a compassionate attorney.

We found a local attorney who handles legal guardianship. (My husband is an attorney, so he selected someone he respects.) To save time (and legal costs), I gathered as much as I could prior to the meeting. I placed in each child’s folder a birth certificate, SSN card, updated lists of doctors with addresses/FAX/phone, updated lists of medications & diagnoses, and assorted records to show the history (i.e., chronic nature) of the disabilities. This included a sampling of PT/OT/Speech/Testing records from years ago, as well as current records.

2. Give the attorney good information.

I gave the attorney sufficient contact information, so he could send needed forms to doctors.

3. Alert your doctors about the forms.

I emailed or called our busiest doctors to give them a heads-up that these forms would be coming. I expressed how much we would appreciate their completing these forms before the end of the month.

4. Inform doctors about day-to-day implications of your son’s disabilities.

For some doctors who might not otherwise know the details of our children’s daily life, I included ways our children’s challenges interfere significantly with self-care and independence, so the doctors understood why we were seeking legal guardianship.

-inability to administer medications independently

-inability to manage public transportation or medical appointments independently

-inability to work full-time or even part-time without someone else’s guidance, supervision, and communication with employers

-inability to maintain basic self-care and hygiene without guidance and supervision

-extreme vulnerability due to misperceptions, naivete and immaturity, and difficulties reading social cues

-our grave concerns for our children’s well-being and safety, if they were left on their own

After all, despite the many gains we see in our children and the many aspects that make our children endearing to us, “Independence at 18″ is a serious matter.

5. Listen to your own attorney and expect a new attorney to be involved.

Our attorney guided us through this next process. Each child was appointed a legal representative. We made appointments with the children’s attorneys.

6. Don’t forget the child.

We explained to our children in simple terms everything that was occurring. My husband assured our children that nothing would change for them. We would continue to be their parents; and we would now become their legal guardians too. We explained that this allows us legally to continue to help them at doctors’ appointments, help them with their medications, and help them achieve all of the goals they have for themselves. We explained that the law sees “18″ as a different time, so we were fulfilling the needed requirements to continue helping them, just as we have all along.

With this as a backdrop, we all met with each child’s attorney. (Each child was appointed an attorney separate from our own.) The attorney chatted briefly with his appointed child. The child answered simple questions. “What are your favorite subjects in school?” “What are your goals for yourself for the future?” “How do you spend a typical day?” “What do you like to do in your free time?” Btw, this may be the one time to let shirts remain backwards, shoes untied, hair unbrushed, pockets hanging out of pants, or otherwise refrain from the cues you give each day. The attorney wants to see the child at his typical, not at his best.

7. Stay on top of things.

When all steps had been followed from our end, I asked our attorney if anything remained. We learned that one key doctor had not filled his reports! I contacted his nurse who is especially fond of my daughter. I asked the nurse to expedite. She placed these forms in our busy doctor’s hands, and we had them within a week or two.

8. Prepare for court day.

Just before our children turned 18, we all met in court — my husband & me, our attorney, and each of our children’s attorneys. The children received a waiver, so they did not need to be present. [When possible, I avoid sharing the dire nature of my children’s disabilities (schizophrenia, autism, etc.) in front of them in such a stark way, without the balance of how many strengths, talents, and abilities they possess. The sterile court proceeding would not have allowed for giving a more humanizing picture, and I also did not want to worry our children needlessly by the terminology.] The attorneys agreed that the children did not need to be present. Other 17yo’s might find it all fascinating from a political science perspective, but we thought it best to proceed this way for our children.

9. Reassure.

Beforehand, I assured the children once again that they would retain just as many decisions about their own future as before. This was especially important for my son. I let him know that “legal guardianship” would not affect his ability (or inability) to work, to attend college, or to enjoy hobbies.  I told our children that we would celebrate afterward, because just like the legal adoption that occurred so many years ago, this proceeding would mean that we could continue to care for them, just as we have been doing all along! We could help them make good decisions, stay in the good care of their doctors, and be kept safe. With relief and joy, we celebrated with a “legal guardianship” dinner afterward!

A few tips:

-Apply for conservatorship at the same time, if your child has difficulties managing his own money, budgeting, and saving. We did this all at once, so we were made legal guardians and conservators all at once.

-When this is all over, carry those legal guardianship papers with you everywhere. Each doctor will need copies after your son’s 18th birthday.

-Realize that SSI/Medicaid are entirely separate activities from the guardianship process. These will be completed in a separate application through state/govt agencies. You could hire an attorney for these steps, or you can navigate through SSI/Medicaid yourself. For suggestions on SSI/Medicaid, see this thread.

-As mentioned in the linked thread, each step assists the next. Any of these can be sought independently. However, when you apply for SSI/Medicaid, your legal guardianship status helps the evaluation for SSI which then assists the evaluation for Medicaid. Apply for as little or as much as your child needs. A special-needs trust can protect his assets while simultaneously protecting his ability to qualify. See your attorney or agency for the developmentally delayed for specific advice.

A note – Our primary efforts are directed at promoting and assisting essential more humane educational paradigm shifts with respect to all children, especially those with special-needs. Even so, sometimes we just need to share these practical how-do-I-do-this-next-step tips with each another!



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