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Monthly Archives: January 2014

I have gone to two meetings in Austin over the past two weeks. On January 15th I was at the Early Childhood Intervention (ECI) Advisory Council meeting. On January 23rd I was at the Arc of Texas’ Government Affairs (GA) Committee meeting. Both are important meetings for different reasons and I thought I’d take a few minutes to discuss them both.

ECI Advisory Council meeting
The ECI meeting hinged around two things that are very important. The first was ECI’s annual performance report (APR) which is required by IDEA. ECI submits this report to the federal government each year. The report covers a number of federally mandated performance indicators. Two me, the two most important indicates are the child outcomes and the family outcomes:
• The child outcomes relate to both whether, as a result of ECI, children are making improvements and to whether they have caught up with their peers. Basically children are making improvements as a result of ECI, but the percentage of children who are functioning within age expectations as a result of ECI is declining.
• The family outcomes relate to whether ECI services help families to understand their rights, help families to effectively communicate their child’s needs, and whether it helps their children to develop and learn. In other words, this is where ECI asks the consumer about the effectiveness of the program. This indicator shows that families are very happy with the ECI services.
Why are child outcomes slipping in terms of functioning within age expectations? This one is complicated. Several years ago, ECI had to narrow the criteria of who is eligible for ECI services. This changed the mixture of the kids in the program, so the argument goes that this is having an impact on the ability to reach age expectations. This is a complicated argument because it seems that Texas is in the middle, nationally, in terms of eligibility for ECI services (i.e. some states have more rigid criteria, some have less rigid criteria) – but this isn’t something that I’m qualified to really quantify, so take this information with a grain of salt. According to the Early Childhood Technical Assistance Center ( when compared nationally for the percentage of children reaching age expectations Texas is behind. However, examined another way Texas is one of 28-30 states (depends upon the outcome measure) that lost ground on this indicator over the last year.
With the family outcomes, this is powerful feedback and because of that I always get into a statistics debate in these meetings. DARS, in their 2014/2015 Legislative Appropriations Request, forecasted 25,187 children would be receiving ECI services each month in FY2012. The family outcome information is measured via a survey. Approximately 1200 families returned surveys. This number represents less than 5% of the people receiving ECI services. Now, this may be a statistically significant sample if you were writing a research paper, but it’s unclear how representative this really is of the entire state of Texas – which is always the source of my arguments on this one.
The second major issue from the ECI meeting was a piece of legislation from the 2013 legislative session, Senate Bill 1060. As background, a few years ago the state was unable to fund ECI at the level that was needed. As a result, ECI made three fundamental changes with profound consequences on the program. First, it narrowed eligibility. Second, it required providers to directly bill Medicaid. This reduced the administrative costs to DARS (i.e. it saved the state money) and required providers to develop a new skill set. Third, it required families to pay some of the costs of the services based upon their perceived ability to pay. This family cost share was expanded as a result of the appropriations that DARS received from the 2013 Legislature. SB1060 directs DARS to study the cost-effectiveness of the family cost share system and to implement rules to make it more cost-effective, as long as the changes don’t make receiving services cost-prohibitive. DARS will report on this to the Legislature by December 1st. In the legislation, cost-effectiveness is defined as: does the family cost share covering administrative expenses?
This seems fairly straightforward. Does the revenue brought in cover the costs? If not, what needs to be changed to make it so? The report that DARS is putting together, however, is a significant undertaking that is going to take a broad, comprehensive look at family cost share and administrative burden. DARS is also seeking input about the family cost share system and its impact on families, questions to consider:
• What needs to be included in this report?
• What information needs to be conveyed to the Legislature about family cost share?
• What should DARS be analyzing?
• How do we balance family cost-share with the desire to provide services and reality? The reality being that this is here to stay?
• Has family cost share made participating in ECI cost prohibitive?

Arc of Texas GA Committee meeting
I went to the Arc of Texas on the 23rd to attend the GA Committee meeting. For those of you that don’t know, the Arc of Texas is an advocacy organization on behalf of individuals with intellectual and developmental disabilities (IDD). They advocate on behalf of individuals with IDD, attempt to be effective with the legislative/appropriations process, train individuals with IDD to advocate on behalf of themselves, help educate the community about IDD issues and needs, and they attempt to keep everyone informed about issues that impact the IDD community.
The GA committee, to paraphrase its charge, has a duty to be very well educated about legislation, appropriations, policy, and matters impacting individuals with IDD and their families. Their task is to inform, educate, and guide the Arc of Texas and its board of directors in terms of how to act effectively particularly with the Legislature on behalf of individuals with IDD and their families.
This was the organizational meeting. The committee is made up of superstars. There are a lot of experienced, passionate, knowledgeable, hard-working people serving on this committee. The intent behind the committee was to review the past, chart out a structure for the future, and decide on some initial directions to focus on.
While the Legislature is not in session, things are not quiet and there is still work to be done. Senate Bill 7 is being implemented, legislative appropriation requests will need to be commented on beginning this summer, and legislation for the next session will be pre-filed beginning this fall. So this was a perfect time to meet with this committee.
The meeting began with reviewing the major pieces of legislation out of the last legislative session. Considerable time was spent discussing SB7. This took up the morning. This was important because you need to know where you’ve come from before you can decide where you are going.
The afternoon was spent looking forward. The committee developed three broad foci for the future, keep in mind that we may call these something totally different. The idea is to give us a place to start:
• Long-term services and supports: Medicaid waivers, Senate Bill 7, managed care, state supported living centers. It’s a big area.
• Education/Transition: ECI, K-12 and beyond, transition (which in Texas begins at 14). Again, another huge area.
• Employment/Transition/Transportation: Individuals with IDD want to find meaningful employment and it’s better for the state of Texas if they do. So this topic area covers employment, transitioning from school to being employed, and transportation. Transportation is huge because if you want to work, but are unable to drive yourself to work, then this is a barrier to being employable. Another huge area.
These three areas represent workgroups that the larger committee divided itself into. Some of us serve on one, some serve on all three. These workgroups are going to:
• Be researching these issues and developing recommendations for policy/legislative changes.
• Those recommendations will then be taken back to the full committee and will then become a draft of a legislative platform for the Arc of Texas.
• This draft platform will then go out to the various chapters and stakeholders for their input.
• After everyone’s input has been received, the GA committee will be developing a legislative platform for the Arc of Texas’ board of directors to vote on and then implement.

In other words, there is a lot of work to be done in a short period of time!

In an earlier post I discussed how Kansas is rolling out managed care (called KanCare) for individuals with Intellectual and Developmental Disabilities (IDD). For that post, see here: . This is extremely relevant for Texans because, thanks to Senate Bill 7 that was passed in the 2013 Texas Legislature, we’re beginning this process.

For the state of Kansas, this was going to go into effect on January 1. The state of Kansas has been forced to delay this implementation. The Federal Centers for Medicare and Medicaid Services (CMS) sent the state of Kansas a letter essentially forcing them to delay this process. In their letter, CMS expresses several concerns:
• They would like to know how managed care is going to identify an individual’s current needs and how managed care will address those needs (i.e. what are the procedures?).
• They would like to know how managed care will address the following:
o Ensuring that each individual receives annual assessments and that each individual receives the services identified by the assessment.
o Ensuring that assessments are timely and that changes in an individual’s condition that prompt changes in services are completed in a timely manner
o Describe the tool that will evaluate need and demonstrate that it is adequate to do so
o Describe the process for developing new assessment tools include stakeholder engagement and training
o Describe how individuals are provided due process when requested services are denied
• They want Kansas to assure them that the providers exist to meet identified needs
• Kansas must implement a corrective action plan, and report on it weekly, regarding the existing underserved wait list

The full letter can be found here:

If this isn’t interesting enough, the National Council on Disability sent a letter to CMS requesting that KanCare be delayed. NCD’s concerns are the following:
• Kansas didn’t provide much opportunity or consideration of stakeholder concerns
• Kansas and managed care organizations need to include stakeholders in the design of the system
• NCD is concerned that KanCare will have a negative impact on the quality and outcomes of services
• Kansas needs to address the people on their waiting lists
• NCD is concerned about the delays in payments from the managed care organizations to providers

NCD further makes recommendations that essentially provide checks, balances, and oversights to the KanCare system.

The full letter can be found:

This is important because many of these same challenges exist in Texas. In Texas budgetary cuts, a failure to adequately fund a system that is expanding as the population expands, political pressure not to increase state revenues via taxes, politicians that want to “help” but don’t understand any of this, and policy makers that don’t understand how decisions impact real people have created a potentially very scary situation with Senate Bill 7 .