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Monthly Archives: June 2013

On June 29th, I finished the first group of Down with Fitness classes. These are fitness classes geared towards children with Down Syndrome. These classes have been running for five Saturdays in a row, for about an hour, at the gymnasium at St. Gabriel’s Catholic Church in McKinney, TX.

We’ve had anywhere between three and eight kids at each of these, ranging in age from three years old all the way to nine years old. Each class also included parents and siblings to help and to participate along with their kids. The idea behind the class is to get the kids moving, work on motor skills and basic fitness, and show the parents that creative and fun fitness activity is possible with their kids (and that their kids would enjoy it).

Each of these classes was organized in a similar manner, though things have been progressively becoming more challenging for the kids. We begin each class with mobility exercises, though we’re not calling them that. In the pictures you see us walking like T-Rex’s and walking like little kitty cats.

Walking like a T-Rex

Walking like a T-Rex

Walking like  cats Walking like cats[/caption]After that, we hop like kangaroos, frogs, or bunny rabbits and then play a fast game of tag.tag

tag2</aThis all serves as a great warm up and gives the kids a chance to develop their muscles as well.

After the mobility exercises we progress to hula hoops. A large number of exercises are done with the hula hoops. These include stepping in and out of the hoops (and the hoops are held at different heights to make this more challenging), putting the hoops around a body part (put them around your arm, leg, etc.), and lifting the hoops to certain heights (lift it overhead, lift it to your shoulders, etc.). hopping

walking through the hoops

walking through the hoops

around the waist

around the waist

lift the hoops

lift the hoops

After those exercises, the hoops are put on the ground to make an obstacle course. First the kids would walk through them, then hop through them, then the hoops would be spread out to make the exercises more difficult. After that, mini-hurdles are used for zig sagging around and for walking over. Finally, the kids throw bean bags into the hoops.hurdles1

zig zags

zig zags

The next activity involves tunnels, kids love crawling through tunnels. After the kids have crawled through the tunnels for awhile, the ball is introduced and the kids push/throw the ball through the tunnel as they crawl through.tunnels

Finally, some type of ball-related activities are introduced. During these classes we have used basketballs, footballs, Frisbees, soccerballs, and on this session we’re using little hockey sticks to hit balls into goals. hockey1

hockey2 After all of that, the session ends with some free play to help the kids wind down.

I wasn’t sure what offering this class would be like, but it has been a lot of fun and very rewarding. I’m going to start this up again in August, run it four 4-5 weeks, take a break due to little kids’ baseball, then start up again in November.

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Individuals with Down Syndrome, especially as they age, tend to be characterized with obesity, health-related problems from that obesity, poor fitness, a reduced physical work capacity, as well as hyperflexibility and low muscle tone.  In the latest issue of Exercise and Sport Sciences Reviews, Fernhall et al discuss the cardio-vascular impacts of Down Syndrome and the impact of exercise training on this.

 

The authors begin by discussing the low work capacity (i.e. maximal oxygen consumption) of individuals with Down Syndrome (DS):

·      Individuals in their 20’s with DS have a maximal oxygen consumption equivalent to a 60-year old without DS.

·      Maximal heart rates in people with DS are typically 25-30 beats/minute below that of people without DS.

 

What causes these?  The authors note that this is not due to congenital heart disease due to the fact that the studies examining this exclude people with congenital heart disease.  Traditionally this has been thought to be due to a lack of understanding/comprehension and a lack of motivation on the part of people with DS.  However, the authors report that with training individuals with DS can take a maximal oxygen test on a treadmill and produce consistent results, so understanding and motivation are not issues. 

 

Other possibilities are a lack of physical activity or obesity.  Interestingly, the authors report that while the DS population is sedentary it is not more so than the general population.  Based upon the authors’ research, 8-10 hours of week of training still result in unusually low work capacities.

 

In the non-DS population, as we age we tend to accumulate more body mass.  As this happens our work capacity declines.  In the DS population, as they age they also accumulate more body mass but their work capacity remains constant.  According to the authors, maximal oxygen consumption remains in the mid twenties (ml/kg/min) for people with DS between the ages of 9 and 45; whereas for the non-disabled population (on average) it changes from about 45 ml/kg/min to about 35 ml/kg/min over that same age range. 

 

All of this combined suggests that understanding, motivation, obesity, and activity level are not the culprits of the reduced work capacity seen in individuals with DS.  While this is oversimplifying the discussion somewhat, essentially the authors report that a combination of the brain’s control over heart rate and a reduced production of catecholamines (for example, epinephrine) are the likely culprits behind this reduced work capacity.    In other words, due to the brain’s regulation a person with DS has a lower heart rate, which has an impact over their ability to supply oxygen to their body, which reduces their ability to perform long, strenuous exercise.

 

The authors report that exercise helps with this.  I wrote an article a number of years ago about exercise and Down Syndrome, and at the time (and even today) there was little research on this.  The good news is that exercise helps individuals with DS just like it helps individuals without DS.  The challenge is that parents, siblings, caregivers, and individuals working with someone with DS need to be cognizant of these limitations because they impact motivation and require creative ways to address the fitness of a person with DS. 

 

Fernhall, B., Mendonca, G.V., and Baynard, T.  (2013).  Reduced work capacity in individuals with Down Syndrome: A consequence of autonomic dysfunction?  Exercise and Sport Sciences Reviews, 41(3), 138-147.

 

 

The Texas Comptroller has certified that the funds are available for the appropriations bills that came out of the 2013 Legislature. There is mixed news for people with intellectual and developmental disabilities and their families.
With regards to the Department of Assistive and Rehabilitative Services (DARS) and Early Childhood Intervention, there is good news and bad news for Early Childhood Intervention (ECI):
 ECI is seeing an almost 18% increase in its funding, from ~$270 million for the current biennium to ~$318 million for the upcoming one. Both respite and the administrative oversight of ECI are being funded at the same amounts as in the current biennium. In addition, the Legislature wants to see the number of hours of services per child per month to increase from an average of 2 hours to an average of 2.9 hours.
 The bad news is that the ECI appropriation has a rider. The rider says that anyone receiving ECI services who has a family income greater than 400% of the federal poverty level must pay 100% of the cost of the services.
It’s great that ECI funding is expanding and that the Legislature wants to see more hours of services per month per child. It will be interesting to hear DARS’ forecasts on how this will impact the number of children served. The rider is concerning and has significant long-term implications for both providers and the people that will be receiving ECI services. This will mean that some families will opt not to receive the services because they cannot afford it and others may be driven to private providers, which means that current ECI providers will have to learn how to be competitive with private providers.
With regards to the Department of Aging and Disability Services (DADS) and their long term services and supports appropriation, there is mixed news that reflects the shift to managed care that is being driven by Senate Bill 7. First, some programs are seeing a reduction in funding:
 Primary home care (~42% reduction): Provides non-skilled personal care services. Reduction is due to STAR+PLUS and this service will eventually be eliminated.
 Day Activity and Health Services (~67% reduction): Another casualty to STAR+PLUS.
 Community-Based Alternatives (~22% reduction): due to STAR+PLUS.
 ID Community Services (~7% reduction): Administrative expenses are being transferred elsewhere and some of the individuals receiving services are being transferred to the Texas Home Living Waiver.
 Promoting Independence Services (~5% reduction): Another casualty due to STAR+PLUS.
 Hospice (~5% reduction)
There are a number of programs seeing an increase in funding, including several waiver programs that are seeing a large increase in funding:
 Community Attendant Services (11% increase): Seems to be balancing out the reduction in primary home care.
 Home Community-Based Services (HCS) (15% increase)
 CLASS (10% increase)
 Deaf Blind Multiple Disabilities (38% increase)
 Medically Dependent Children (6% increase)
 Texas Home Living Waiver (63% increase)
 Nursing Facility Payments (4% increase)
 Medicare Skilled Nursing Facility (6.5% increase)
 Balancing Incentive Program: 14.7 million
 State Supported Living Centers (~2% increase)
It should be noted that none of the bills that sought to establish realignment committees for the State Supported Living Centers (SSLC), closure of the SSLCs, or bills of rights for people with intellectual and developmental disabilities passed. There are no riders directing DADS to close SSLCs, or explore closing SSLCs, only a rider to develop a ten year plan for the SSLCs.
The expansion of the waiver programs is great news. But the reality is that managed care is coming as a result of Senate Bill 7, so we’re going to be in uncharted territory soon. The fact that the Legislature will not move on the SSLCs is interesting.