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The stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 8,100 times in 2013. If it were a NYC subway train, it would take about 7 trips to carry that many people.

Click here to see the complete report.


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 Legislature has released their budget bills, House Bill 1 and Senate Bill 1.  When passed, these bills will be the funding for state agencies in 2014 and 2015.    This information is important because it has an impact on the various state agencies to provide services.


In the current biennium (2012/2013), the Department of Aging and Disability Services is receiving approximately $12.5 billion in funding for providing long-term services and supports to the aging, disabled, and individuals with intellectual and developmental disabilities.  For the upcoming biennium (2014/2015), DADS has asked for $13.5 billion (or an 8% increase).  Both HB1 and SB1 fall well short of DADS’ ask.  HB1 provides for $12.7 billion (or a 1.8% increase over the current biennium), SB1 provides for $12.59 billion, or a .6% increase over the current biennium.


There are a number of programs that are seeing reductions in HB1 and SB1.  These include:

  • Primary home care (~50% 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 (~24% 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.
  • State Supported Living Centers (~3% reduction)


There are also a number of programs that are seeing increases in HB1 and SB1, these include:

  • Community Attendant Services (11% in HB1, 6% in SB1): Seems to be balancing out the reduction in primary home care.
  • Home Community-Based Services (HCS) (7% increase)
  • Medically Dependent Children (4.6% increase)
  • Nursing Facility Payments (3.4% in HB1, 2.2% increase in SB1)
  • Medicare Skilled Nursing Facility (14% in HB1, 8.7% in SB1)
  • Hospice (7.4% in HB1, 5.5% in SB1)
  • Balancing Incentive Program (140% in both bills)


Basically these recommendations reflect a shift to providing services via managed care (see Senate Bill 57 for an example of what this could look like).  For some populations, this may be a good thing.  For individuals with intellectual and developmental disabilities, this may or may not be helpful.  There are several concerns with this.  First, managed care is using a medical model to treat diseases and apportion services accordingly.  People with IDD’s don’t have a medical condition that needs treated, so it’s difficult to fit their long term needs into a managed care setting.  Second, managed care organizations may not have experience with the IDD population, which may profoundly impact services.  Third, it’s unclear if managed care can quickly react to changing situations with people with IDD and provide the fast, flexible services that they sometimes need.


While both HB1 and SB1 provide an increase in funding (which is a positive), they do not come near to addressing the needs to the aging and disabled in Texas.  Now, neither budget bill is set in stone.  There will be lots of opportunities for input.  First, you can contact your representative and senator and provide feedback.  Second, there will be plenty of budget hearings over the next few months where written testimony and in-person testimony can be provided.  The budgets will go through a cycle of hearings, adjustments, and both the Senate and House versions will need to be reconciled before it goes to the Governor for his signature.


The Texas Senate Health and Human Services Committee issued the report on their interim charges in December 2012.  The report can be found here 


Their interim charges were:

  • Federal health care reform
  • Cost containment initiatives
  • Translational research
  • Utilization of Medicaid services
  • Waiver efficiencies
  • CPS caseworkers
  • Public health
  • Mental health
  • Quality and efficiency
  • Federal flexibility
  • Foster care redesign
  • State supported living centers


These interim charges and this report are important because they are going to drive legislation and funding priorities this session.  I’m going to focus this post on cost containment initiatives, Medicaid services, waiver efficiencies, and state supported living centers.


Cost Containment initiatives:

Essentially the interim report says that the Legislature needs to continue the current cost containment initiative.  For the current fiscal year, these include:

  • Expand managed care (i.e. STAR and STAR+PLUS)
  • Initiatives to improve quality of care and health outcomes (a lot of this is administrative changes)
  • Changes to durable medical equipment policies
  • Reducing medical provider rates
  • Agency cost containment initiatives
  • Medicaid transformation waiver


For the next fiscal year (2014/2015), the initiatives include:

  • Implementing managed care statewide
  • Reduce preterm births and improve birth outcomes from financial incentives/penalties to providers, education campaigns, and administrative strategies
  • Strengthen prior authorization for Medicaid services
  • Improve coordination between acute and long term care
  • Reform Medicaid payment system to reward quality outcomes and efficient use of state resources
  • Cost sharing


Medicaid Services:

Essentially the charge is to look at how to reduce unnecessary utilization of Medicaid services and fraud.  The report reviews a number of issues with Medicaid services that have been in the news lately, including the orthodontics scandal, the medical transportation program, non-emergency ambulance services, and nursing facility services.  Based upon these, the committee recommends an increase in the quality assurance process (audits, review of prior authorization and medical necessity to ensure that services are needed and authorized appropriately), avoid the tendency to attribute increased utilization to outliers, and to address conflicts of interest within the medical necessity determination process.


Waiver Efficiencies:

The committee’s charge was to look for strategies to lower costs, improve quality, and increase services with regards to the Medicaid Home and Community Services waivers.  Their recommendations include improving the assessment tools to help guide individuals into the appropriate services and supports, address conflicts of interest when the entity authorizing services is the one providing them, make sure families help pay for services when they can afford them, better coordination of acute and long term services and supports, implementing behavior intervention teams, and develop lower cost community options.


State Supported Living Centers (SSLCs):

The committee’s charge was to monitor the implementation of the U.S. Department of Justice settlement agreement and to address SSLC concerns.  Their recommendation largely seems to deal with reporting.  For example, they recommend a comprehensive plan of action on what it would take to reach compliance with the agreement, report it annually to the Legislature, and report quarterly to the Legislature on targeted improvement areas.  In addition, they recommend implementing pilot programs and best practices on a small scale and then looking at expanding statewide.  Finally, they recommend that DADS identify which of the areas in the DOJ agreement are most critical and direct time and resources to those.


I feel that there is a lack of vision in these recommendations.  There was so much opportunity for change and most of the recommendations seem to involve naively adding layers of red tape (for example, if we require providers to report on being efficient then this will motivate them to be more so), paying less to providers, implementing more reporting requirements for everyone, having families pay more, and shifting everything over to managed care. 


In previous postings I have discussed issues that have arisen as a result of funding constraints for Early Childhood Intervention (ECI) in Texas.  As a result of funding constraints, the state agency that oversees ECI (Department of Assistive and Rehabilitative Services, DARS) had to make changes to ECI which included:

  • Narrowing the eligibility of who qualifies for ECI
  • Implementing a family cost share so that parents pay for some of the services
  • Requiring ECI providers to directly bill Medicaid for reimbursement


These changes had unintended consequences.  Because eligibility was narrowed, it resulted in the children being admitted to the program needing greater services.  This means that ultimately as the population increases, the program will have to be narrowed even further (if funding remains static) due to this.


Texas is not the only state experiencing challenges with providing ECI to children and infants.  The IDEA Infant and Toddler Coordinators Association ( does an annual survey of IDEA Part C (i.e. ECI) coordinators about implementation issues and challenges.   The 2011 survey is located here: .  The survey results are sobering.


I’ll look at this report dealing with several matters:

  • Eligibility for ECI
  • Service delivery
  • Fiscal matters
  • Participation in Part C



Texas narrowed the eligibility of infants and toddlers who qualify for ECI, as a result fewer children are admitted into ECI.  Of the 50 states and 3 territories surveyed:

  • 20 states require one of the following for eligibility for ECI: at least 25% delayed in two or more domains, 30% delay in one or more domains, 33% delay in one domain, 1.3 standard deviations in two domains, 1.5 standard deviations in one domain
  • 18 states require one of the following for eligibility for ECI: 40% delay in one domain, 50% delay in one domain, 1.5 standard deviations in two or more domains, 1.75 standard deviations in one domain, 2 standard deviations in one domain, 2 standard deviations in two or more domains.


In other words, 38 states are more restrictive than Texas in terms of eligibility criteria.  In addition, ten states made their eligibility criteria more restrictive over the last three years.  One made theirs broader.  Ten are changing their criteria this year.


Service Delivery:

Looking at all states, the number of direct services hours that were delivered, per child per month, has declined by approximately 22% from 2009 to 2011.  In 2011, the nationwide median for number of hours of delivered services, per child, per month, was 4.5 hours.


Fiscal Matters:

As a result of funding challenges:

  • 8 states have implemented family cost shares or increased those fees
  • 9 states have required the use of private insurance for ECI
  • 9 states have narrowed eligibility
  • 8 states have required prior approval when service hours exceed a specific amount
  • 13 states have reduced ECI provider reimbursement


21 states have conducted some type of study or planning process as a result of the fiscal situation.


In other words, like Texas, a lot of states are experiencing funding challenges with ECI.


Participation in Part C:

Worryingly, according to this survey, eight states are discussing or planning dropping out of Part C.  Most of this is due to the cost of the program and population growth (i.e. it’s not a sustainable program).


It’s a sobering look at the rest of the country and hopefully provides some perspective on what is happening in Texas currently.


State Senator Nelson filed Senate Bill 57 for the 2013 session of the Texas Legislature.  This is an important bill because it deals with the redesign of Medicaid acute care and long-term care services/supports for individuals with intellectual and developmental disabilities.  It needs to be emphasized that as of this date (9 January 2013), this bill has only been filled.  To go into effect, it needs to be heard in committee, passed by committee, and heard/voted on by the Senate.  Then the entire process has to be repeated in the House.  Finally the Governor needs to sign it.  So there’s a way to go yet, but as it will be an extremely impactful piece of legislation it’s important to discuss what’s in it.


First, it’s heavily focused on moving services over to a capitated, managed care model.  Capitation means that the managed care organizations receive a predetermined payment for “X” service per recipient.  It’s focused (in terms of long-term supports) on the following waiver programs: community living assistance and support (CLASS), home and community-based services (HCS), deaf/blind/multiple disabilities (DBMD), and the Texas home living (TxHmL) waiver programs.


The legislation has the following goals:

  1. Provide Medicaid services to more individuals, in a cost-effective manner
  2. Improve access to services by better informing individuals on what’s available and how to apply for it
  3. Improve the assessment of an individual’s needs
  4. Improve the coordination of services and supports
  5. Improve outcomes
  6. Promote high-quality care
  7. Promote person-centered planning and self-direction


If put into effect, this bill will be implemented in two stages:


Stage One: Essentially Test Managed Care

The redesign process will begin by testing the provision of services and supports via capitated managed care that would be implemented on a limited scale no later than 2014.  Pilot program providers would be tasked with increasing access to services and supports, improving quality and service coordination, promote person-centered planning, and promote efficient use of funding.  These pilot programs would be evaluated by DADS and HHSC and would expire on September 1, 2018.


In addition, in this stage acute care services would be provided via STAR or STAR + PLUS.


Stage Two: Transition to Managed Care

No later than September 1, 2016:

  • Texas Home Living waiver program participants would be transferred to the STAR + PLUS managed care program.
  • Individuals with intellectual/developmental disabilities who receive services from other Medicaid waiver programs (or that reside in an intermediate care facility) would be transferred to the STAR + PLUS managed care program


STAR + PLUS would be expanded to all parts of the state.  A STAR Kids program would be implemented to provide medical assistance to children not otherwise covered by STAR + PLUS.


While both stages are on-going, DADS would develop and implement an assessment instrument to help guide the resource allocation process to individuals.  There are also sections of the bill dealing with expanding residential options and behavioral supports.


While only 31 pages long, the bill (if passed) would have a major impact on individuals with intellectual and developmental disabilities and their families.

The stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 6,100 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 10 years to get that many views.

Click here to see the complete report.

With the new year, I’ll no longer be updating two blogs. I’ll keep this blog up so that everyone can access the old posts, but new posts will be found at: . I’ll continue providing information on research, as well as training and exercise-technique related information on the yourhpservices site. If you are subscribing to this jcissik blog, please go to the other one and subscribe to it!

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