Friday, March 26, 2010

CLASS: community living assistance services and supports

If it weren't for the recent healthcare reform bill, many Americans would shrug their shoulders if you asked them if they knew what the commnity living assistance services and supports (CLASS) program was. In fact, some of them still don't know what it is, mainly because the healthcare reform bill is over 2300 pages long, so who could expect them to understand every single detail?!? But this post will not get into my positive and/or negative thoughts on the bill. I am just motivated to blog on the CLASS program.

Although it is a federal program that provides long term care for mentally and/or physically disabled Americans, each state varies a bit in how they handle enrollment and other details. Information on the criteria for who qualifies can be found on this government link: and

What is consistent across state lines is that it helps with the long term needs of the individual. It may include payment for adapted feeding equipment, respite, physical/occupational therapy treatments, wheelchair and accessories, and modifications to a home/apt. By keeping the individual with special needs as independent as possible, it is believed to help in numerous ways, and possibly save the taxpayers money because the individual is overall healthier and less dependent upon caregivers. I have had the honor of providing therapy services to young adults with cerebral palsy in which CLASS paid for it. The only thing that seemed to be a bit burdensome is when I ordered adapted feeding equipment or computerized assistive technology, it took many months for the paperwork to be processed and items to be purchased. But hey, at least it got paid for eventually, and these young adults wouldn't have had the money to pay for it on their own otherwise.

I presently work as an occupational therapist with infants and toddlers, and at times am doing case management (social work) with families too. One of the things I encourage families with children with developmental disabilities (cerebral palsy, down syndrome, CHARGE, etc) to do is sign up for the CLASS program. They can sign up on the waiting list for more than one company that sponsors it, but once they're application is being processed they can only go with one facility. I say to go with the first place that calls you, or at least in my area. One place I know off of the top of my head that offers the programs is MHMRA. In the state that I live in sometimes it is 5 or more years before the child's application gets processed and they begin the CLASS program. Some states are quicker, probably depends on funds and populations...not sure. It seems so weird to rush these parents of babies into signing up for various programs when they have barely grasped the reality that their baby will have a permanent disability. But if they wait to sign up for it when they need it, then they'll be disappointed of the waiting period. There are numerous other programs that I encourage people to sign up for, but I think every state is so different in what they offer. I encourage parents to find a case manager if they don't already have one. They can really help you navigate the world of special needs programs. And it looks like after the healthcare reform bill is in effect, there will be changes to the present programs as well as new additional ones.

Thursday, March 18, 2010

Defying Gravity...Carnivals Should Be Fun!

Today my family of four along with my sister-in-law went to the carnival. Within the "kiddy" section, there were simple rides like the carousel but there were some more gravity-defying rides as well. My husband enjoyed riding the rides with my 6 year old daughter while my 21-month old son stayed in the stroller and I took pictures of everyone. But I did manage to get on one ride with my daughter, and boy was it fun! It was a ride that went in a circlular pattern while the kids/adults layed two people to an "airplane". While on our airplane, we were lying on our bellies and strapped in from behind. Not only did the ride go in a forward circular pattern, but it also went up/down making you feel as if you were "losing your stomach". Now, I grabbed my little one's hand, because I was thinking she may freak out. But I was wrong, she squealed with laughter. She had so much fun! And she should have. Once kids are of a certain age, they should think it is so much fun to move in various ways against gravity. It is not uncommon to see a toddler trying to be upside down off a couch or jumping off of furniture!

There are five directions to move within space: up/down, forward/backward, circles (rotary and axial), upside down, and sideways. Swinging on a swingset back and forth is a simple way to move, whereas riding the carnival ride today as described above was more complicated because it combined movements. When we move in these various directions, vestibular receptors in the inner ear are stimulated. The vestibular system can be a tricky sense. When a person has an ear infection or vertigo, this system can go haywire and throw the person's balance off. It is quite scary to feel off balance. That is why some kids with vestibular disorders don't like carnival rides. In fact, some would probably whether do anything but get on that ride!

If you have a child who doesn't like to play at the park on the swings, slides, or climbing devices, it is possible that he has difficulties with vestibular processing. If the child also has a gross motor delay or falls often, this should be discussed with the child's physician. Physical or occupational therapy services may be necessary to help the child. It may seem trivial when the child is only 2 years old, but if the problem is not corrected, the child ends up being a grade schooler who can't ride a bike or roller skate with his peers. He may also be the type who is clumsy, making him be the last one chosen to play games during school recess such as for soccer or dodge ball. If you suspect that your child has problems with vestibular processing, it is definately worth checking out.

Some other signs of the problem could include: low muscle tone, delayed development with two handed activities, clingy to parent when should be playing with peers (especially at birthday parties), fatigues easily, scared to sit in chair or on potty due to dangling feet, short attention span, and delayed eye-hand coordination. Those were all symptoms of kids who are over-responsive to vestibular input or who have sensory based motor disorders. Kids who are under-responsive are more lethargic and passive. Kids who are sensory seekers are described as the energizer bunnies and can never seem to get enough movement unless they are asleep. Some of these kids are even known to tire out the family's energetic dog! They tend to jump from high surfaces, fidget, and spin around. All of this over activity needs to be directed, especially if the child has a language or fine-motor delay. These children may or may not have a sensory processing disorder (SPD, AKA sensory integration dysfuncton), but should be checked out by a therapist. I don't think that every child with the above-mentioned symptoms necessarily has a vestibular disorder, there could be other things going on including neurological deficits, other disabilities, or environmental factors. An example of an environmental factor is lack of or decreased stimulation such as being at home all day with a mom who is on bedrest and can't help the child get the necessary exercise he needs, so he overly seeks out movement such as jumping off of high surfaces. This is the case where it is well worth it to pay extra for a young babysitter to come over to play or to invest in a mini-trampoline for the living room. So, not every referral to a therapist will mean the child needs intervention, but maybe at least some ideas can be generated for helping the child.

Thursday, March 11, 2010

Understanding Baby's Signals

By no means am I the baby whisperer, but I'd like to think that I am pretty good at reading cues babies give off to let us know their needs. For example, sucking on their fingers indicates that they are hungry whereas having irregular breathing can indicate they are drowsy. I think that this is important for new parents to understand, especially when it comes to understanding why the baby is crying. Afterall, not every tear shed from the baby means they neeed a bottle!

Instead of re-writing every signal babies tend to give off, I am providing links to a couple of sites that do a good job of explaining this already

Sunday, March 7, 2010

Liquid Needs for Children

In the next room over I hear my toddler son requesting for a "deen". Translation = drink. If I let him, he would graze all day with a cup in his hand...not a good habit to create. Especially since he is at the low end of the chart on weight for his age. And I notice that the days I inadvertently give him too much liquid, he doesn't eat as much. So, I try to stick to liquids at meals and snacks, and other sips here and there.

One thing I get asked alot at work is "How much liquid does my child need?".
Well, that's a great question. If kids are eating lots of fruits and vegetables, then fluid is in those foods as well. So, it's not as simple as saying how many ounces of fluid should be in their cups. It can be a fine line. Don't give the child enough fluids and they get dehydrated...especially in the hot, summer months. Give the child too much fluids and the result is more difficulty with potty training and the child eating less food. This sounds like a trivial issue for some people, but for the kids I work with that have special needs, it can be a complicated topic. Many of them have a diagnosis of "failure to thrive" with the threat of a feeding tube hanging over their heads. In these cases, the parents and caregivers are counting every calorie. Especially for my little ones preparing for heart surgery who are burning calories at a faster rate than typical.

The rule of thumb is: 2-2.5 oz of fluid per pound of body weight is needed for an infant and 1-1.5 oz of fluid per pound of body weight is needed for children. The differences are due to toddlers and older kids eating table food, in which many foods have fluids within them. Examples include apples, soup, tomatoes, etc.

Now this is not always the case. Some of the kiddos that I work with are on high calorie formula and may not take in as many ounces of liquid for various reasons. Also, babies with severe infant reflux may spit out alot of liquid...this can be a fine line too, because if these babies are overfed to make up for the fluid loss, then they will just spit it up again!

Well, there is not a simple answer in terms of how much exactly a child's cup should contain and how many times a day. But, hope this entry helps give a baseline!

Thursday, March 4, 2010

Apraxia of Speech{77B3D5EE-D59D-4198-8F68-D4925C00354B}¬oc=1

This article explains that using repetitive books to help with apraxia of speech is beneficial. My two favorite repetitive books are Goodnight Moon & Brown Bear, Brown Bear. Although I am not a speech pathologist, I work with many children with dyspraxia of the body and apraxia of speech. I definately think repetition and predictability help these children to gain new skills.

My daughter loved her "Goodnight Moon" book so much, that we wore two of them out, and I had to buy a third. Through repetition of reading it to her, and her looking at the pages often, she pointed out to me that the mouse is in a different location on each page. Pretty good of her to have noticed that at the age of 2 years. But I'm sure that if I had not read that book over and over to her, she probably wouldn't have noticed it!