Grace was born with a rare genetic condition called Miller-Dieker Syndrome, a specific type of Lissencephaly, a neurological condition characterized by an abnormally formed brain which causes symptoms like seizures, sometimes other health conditions such as heart and lung diseases, and most noticeable , developmental delays , or in many cases never being able to develop those skills, they are not just delayed. Because of this, Grace will never be able to talk, walk, use her hands purposefully, make decisions about her life or medical care, feed herself, eat by mouth without aspirating, roll over (anymore, she used to), sit up unassisted, or any of the things that are necessary to stay alive. We love her very much and gladly take care of all of her needs on a daily and nightly basis, like any normal parent would do for their child, typical or special. We plan to continue doing this for as long as she lives. Because of Grace’s needs, and the difficulty of finding, much less paying, for someone to take care of her, I do not work outside the home and I am her caregiver.
However, the state has some laws about what happens when people with disabilities turn 18 years old. The law requires that the person be treated as a legal adult even if they cannot act in the capacity of an adult. They now have certain rights such as the right to make decisions about their lives, medical care, education, careers, and finances. The purpose of the laws is to protect vulnerable people from being taken advantage of by their own parents or whoever was taking care of them up to this age. For instance, if the person has a disability but is still able to live independently or work, the laws help make sure that no one steals their money or prevents them from making their own choices . The problem is that the laws are ‘one size fits all’. The laws require that all persons, regardless of ability, have a legally appointed guardian, even if nothing is going to change for that person and they remain totally dependent on their parents or other caregiver. These laws say that once Grace reached the magical date on the calendar marking 18 years of beating the odds, despite her condition, she is now officially an adult and we have no rights over her life or legal authority in her care, as in medical and legal.
In other words, we must now go to court to be granted the “right” to take care of our own daughter’s needs. The process of having a court grant legal guardianship is so difficult that parents are encouraged to start one year in advance! Oh, and by the way, you have to file a report every year after that and pay a fee. This may not be a big deal for people who regularly pay lawyers to handle their affairs but for people like my family, who are living on the edge, paycheck to paycheck, it’s a big deal. Getting guardianship is expensive, time consuming, and complicated. You can’t just walk in and sign a paper at the county clerk’s office and be done with it. I understand that this could be necessary in complex cases , especially when there are no living parents and a non-parent is in control of the child/adult. But the law should take into account different circumstances.
Due to Grace’s severe disabilities, it would easy for me to get one of her doctors or any doctor to sign a paper saying that she is 100% incapacitated. But that is not good enough. You might think there are people in some office or governmental agency who are paid to help low income families with this required process, but you would be wrong. Instead you are given lists of suggested non-profit agencies, but most of them are not for children like my daughter. They are for disabled adults who have some ability to communicate. I have tried every option that has been suggested to me by parents, a hospital social worker, online websites, and Facebook groups, with no luck. Living in a rural area means that there are even fewer options. I’ve made multiple attempts to call my area’s Lone Star Legal Aid, but could not get a person on the phone. I’m not willing to drive 90 miles to the office just to be turned away. I’ve had friends suggest lawyers they know who ‘might’ be willing to do it cheaply or free, but I have not called them because I can’t even afford the court costs. And most importantly, it’s not necessary! If my daughter needs medical care, I will be the one driving her there and wheeling her into the registration office. Are they going to refuse to care for her because she can’t sign the paperwork?
Here is one Texas county’s online instructions for the guardian, to give you an idea of how much work it is. Court Instructions.
Thankfully, there is one other option that was recommended to me on Facebook and that is what I have opted to do for as long as it works. There may come a time when I still have to go to court. But for now, we are using the newer, lesser-known option of Supported Decision Making which only requires getting a few forms notarized. You can also get a Power of Attorney and Medical Power of Attorney. Technically your child is supposed to have the mental capacity to understand and sign these documents. I have no idea if these papers will always be accepted, but other moms have said they work. So, I guess for now I will hope and pray that this all I need to do. And pray I have been doing! In fact, successfully getting these forms notarized was an answer to prayer and the result of discussing this situation with my Bible study group. Always pray!
As you can see, parents can be put in a tough spot by laws that are supposed to help. There are people who need the protection of guardianship laws, no doubt, but when they were written, I don’t think there were very many children like my daughter who were surviving into adulthood and being cared for at home. Longer lifespans have been brought about by better care options like feeding tubes, better seizure medications, and tracheostomies, as well as improved respiratory therapies and medications. If it wasn’t for the development of feeding tubes and special nutritional formulas, many of these children would die of aspiration pneumonia. The laws need to be improved to recognize that not all disabled children who turn 18 need guardianship protection. Or at the very least, courts must realize the financial and practical burden this puts on many people and provide other options, especially for those in rural areas. Supported Decision Making is a step in the right direction and I am glad it exists, but more needs to be done. Hopefully all of the agencies that currently request proof of guardianship will also accept Supported Decision Making forms. I hope this article helps someone navigate the tricky waters of their child turning 18.
Have a story about guardianship? Please share in the comments!