Managing the Medical

A guide for families of the disabled for dealing with your
loved one’s medical needs.

Parents and families of the disabled spend a lot of time and energy trying to get the education, services and accommodations to deal with their loved one’s disability. But what we don’t think about a lot in advance is how to deal with the inevitable – the medical issues all humans face and how to deal with them when the patient has a disability — particularly an intellectual disability (ID) that can create unique challenges for family and medical professionals.

Having the experience of being both a parent of a young adult with ID and a medical malpractice attorney, I have seen the medical profession at its very best and very worst. I can offer some tips on how to deal with a situation that may arise on a moment’s notice.

People with ID tend to suffer medical issues at a rate higher than the typical population. Many have respiratory issues. Obesity is a continuing challenge. Some conditions, such as Down Syndrome, involve nasal and airway conditions different than typical individuals. In short, family needs to be prepared. Here’s some advice:

1. Be an advocate. We know how to be an advocate for our loved one when getting services. We need to be an advocate when getting medical care.
2. Understand the situation. There is an almost automatic response to ID as meaning an individual is child-like. There are good sides and bad sides to this equation. While many techniques that are useful in dealing with a pediatric patient may be helpful to the ID patient, there are some very profound differences. While an ID patient may not understand any better why a particularly painful procedure is being done to them as much as a pediatric patient, the two are not the same. An ID patient may be significantly stronger and physical restraint may be difficult.
3. Resist deferring to the path of least resistance. Probably the most important advice. Health professionals can be pressed for time and resources. Getting something as simple as an X-ray usually takes a few minutes. With some of our loved ones, it can be a true challenge and take a very long time. Doctors, nurses and techs may say to you “normally, we’d just do an X-ray to be on the safe side, but given his resistance…” Don’t be afraid to insist on the full access to medical care your loved one is entitled to. You have the right to insist. It should be your judgment call. Don’t ignore that restraint or sedatives have a potential down side. But the decision should be yours. Ask to be informed. Ask the right questions: “What would you be looking for on the X-ray and what would happen if we didn’t do the X-ray and what you would look for is actually there?”
4. Instruct the professionals how to do it right. We’ve all been in the situation when a person knows your loved one is disabled and tries to communicate with them by speaking in a loud voice – as if ID is a hearing impairment. Don’t anticipate that because people are trained medically, they are going to do any better. The objective is to instruct. Health care professionals’ natural inclination is to bring seven professionals in the room, all of them crowding around your child and loudly trying to reassure him or her that a long needle is not going to hurt. Things quickly go South. Tell them: Don’t crowd. Don’t talk loud. I’ll do the reassuring. If you have the capability of calming your loved one, insist on being there. Unless they are operating in a sterile environment or using radiation, there is no reason for you not to be there. Tell the nurse or doctor, “I can make this easier for you.”
5. Don’t assume medical professionals know how to deal with ID. They probably know less than you do. They almost certainly know less about your child’s diagnosis than you do – we have all come to learn more medicine specific to our loved one’s than most medical professionals will possess. Don’t be condescending or adversarial, but don’t be shy. Share your knowledge in a helpful way.
6. Understand how medicine in the USA works. Whether we like it or not, medicine is a business in the USA. Know that many decisions are made on at least in part on an economic basis. Doctors, nurses, techs and everyone else have to operate in the system they are given. Keep this in the back of your head. I’m not saying to acquiesce to it but try to work around it. “If we do the X-ray, would that mean he’ll be discharged sooner if they don’t find anything…”
7. Don’t be an enemy. It sounds crazy, but the things we learn about modifying our children’s behavior apply to medical professionals as well. Make them feel that they want to make you a satisfied customer because you are a good person. Thank them for a good job. Give them positive reinforcement. They are all human.
8. Understand Medicine is a science. Good medical care is driven by what is proven effective. You can’t know the studies that are available to back up almost every imaginable medical decision from small to large. A good doctor should know those or be referring you to someone who does.
9. Ask questions. Insist on answers.
10. Ask good questions. Understand that you cannot be a doctor based on internet research, but you can ask good questions. And never start a sentence with, “I read on the Internet…” You want the doctor thinking; “OK, this is a good educated care-giver. I can explain to them why we are doing this this way.” Don’t ask, “are the tests back yet.” Ask, “how’s his white cell count? Find anything else of significance?”
11. Know your loved one’s medical history and medications. Not a bad idea to keep this info on your phone. Medical histories aren’t always available at a moment’s notice. You can be the best source.

These are just a few tips. But there is one final tip that is extremely important. If your loved one is 18 or about to turn 18, you should talk to a lawyer about Guardianship. A Guardianship may give you the legal right to make medical decisions for your loved one if they are no longer a minor. It’s an important legal right and your loved one should not go without a guardian if one is necessary.