Sunday, April 21, 2013

Level of Care

Earlier this month, we had to complete a level of care needs assessment survey for Alex with the help of his caseworker assigned by the state to manage his disability funds. By answering a series of questions about what he can and cannot do, we provide information used to determine the amounts and kinds of support services he needs. At this point, Ed and I are providing nearly all of these services ourselves, but when Alex eventually goes into supported living, this information will be vital to making sure that his needs are met. While it’s sometimes difficult to admit that Alex can’t do certain basic tasks, we know we must be honest in conveying his needs to be true advocates for him. In the past year, he has made good progress in improving his behavior, but he still needs quite a bit of care on a daily basis. As I explained to Ed’s sister last week when she was here visiting, in many ways, Alex is just a giant toddler.

One of the primary areas of needs assessment is self-care. Because Alex has poor fine motor skills, despite years of occupational therapy, he still needs a great deal of help completing basic daily tasks to take care of himself. Moreover some of the medications he currently takes hinder his motor movements, requiring that we assist him. For example, Alex can undress himself, but he lacks the motor planning skills to dress himself independently. If we place a shirt on top of his head, he can pull it over his head and with some help place his arms in the sleeves. Similarly, he needs us to hold his pants so that he can step into the legs. Since he hasn’t mastered zipping, buttoning, or tying, we have to fasten his clothes for him. For this reason, he usually wears clothes that require no fastening, such as slip-on shoes, t-shirts, and track pants with elastic waistbands.

While we are fortunate that Alex can use the toilet independently and never has accidents, we still have to remind him to close the bathroom door, make sure his pants are pulled up all the way when he’s done, and wash his hands afterward. Another self-care issue requiring our help and supervision is grooming. Alex likes to be clean and neat, but his fine motor skills again hinder him doing things for himself, such as shaving, cutting his nails, combing his hair, etc., so we must do these things for him. Thankfully, he enjoys being groomed, so he is very cooperative when we complete these tasks. In addition, we must supervise his bathing and tooth brushing, as he would only remember to clean small parts of himself, forgetting to wash/brush completely.  Specifically, even though he knows he has 32 teeth, he seems to only want to brush the front eight.

Although Alex can feed himself with a fork and spoon, he hasn’t mastered how to cut his food with a knife, which means we have to prepare most of his food for him. His shaky hands make pouring drinks difficult and spilling them a constant likelihood; therefore, we fix his beverages and put them in cups with lids and straws for him to drink. Besides the crucial feeding assistance, Ed and I must supervise Alex’s various medications that he takes throughout the day. While he is cooperative about taking the medicine, he is not capable of following the dosing schedule, and he needs for one of us to place the pills on his tongue so that he can swallow them. However, we are thankful that he can swallow pills, especially since he has to take so many of them every day.

Another area of needs assessment involves self-direction, such as planning. Since Alex’s verbal skills are limited, and his handwriting is nearly illegible, he relies upon me to make phone calls regarding his disability services, doctor appointments, prescription refills, and therapy session, as well as to fill out needed forms for him. As his “personal assistant,” I coordinate all of these important tasks for him and am thankful I’m organized enough to keep all of his appointments straight. The state has also appointed me as his authorized representative to oversee his disability benefits and keep track of money spent for his needs. In addition to contacting various professionals who help Alex, we must also provide transportation since Alex can’t drive or ride a bicycle. Moreover, his lack of judgment when it comes to safety issues means that we still have our childproof locks engaged on the back doors of our cars so that he can’t suddenly open them.  Also, we don’t trust him to walk alone because he is seemingly oblivious to traffic and could easily get hit by a car if he weren’t paying attention.

Alex has other safety concerns, as well, that we must address. To prevent him from getting into things that could hurt him, we have childproof covers on our basement and garage doorknobs so that he cannot go into those places without our supervision. In addition, we still have some of our cabinets secured to prevent him from getting into potentially dangerous things. Because he called 911 a few times to see what would happen when he was younger, we have hidden our phones so that he cannot call in false alarms. In addition, we have hidden away in boxes most of our breakable knick-knacks after he went through a phase where he would throw things to get attention. Similarly, we keep our bedroom door locked at all times because in the past Alex had an annoying habit of dumping my jewelry box onto the floor, making a mess. Although he is probably past that destructive stage, we have not tempted fate. Once again, we have had to make our house toddler-proof, or in this case, Alex-proof.

As we look toward the future, we anticipate that Alex will continue to make good progress with his behavior so that we can trust him more and gradually ease restrictions around the house. We also hope that his motor skills will improve so that he can do more tasks independently and safely. Until he is ready to do things for himself, however, Ed and I will continue to walk a step behind him, making sure that all his needs are met.

“Care for the flock that God has entrusted to you. Watch over it willingly, not grudgingly--not for what you will get out of it, but because you are eager to serve God.”  I Peter 5:2

1 comment:

K. C. Wells said...

I think this is something that we need to really start accepting and working on as a society. We're having more and more people diagnosed with autism, and we need to have services in place for them as children AND as adults. Alex is lucky to have two parents who help him take care of himself and teach him to grow, but so many aren't that fortunate.