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Tag Archives: Senate Bill 7

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 (http://ectacenter.org/~pdfs/partc/part-c_sppapr_13.pdf#page=8) 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: http://wp.me/pZf7K-9h . 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: http://media.kansas.com/smedia/2013/12/27/18/37/Dof5m.So.80.pdf

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: http://www.ncd.gov/publications/2013/12132013/

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 .

With the passage of Senate Bill 7 in the last legislative session, support and services for individuals with intellectual and developmental disabilities is moving over to managed care. Norine Gill forwarded an excellent article to me from Disability Scoop on how Kansas is experiencing this (the full article is here: http://www.disabilityscoop.com/2013/12/06/worries-outsources-disability/18946/ ) and it is worth reading.

The article makes the same points that many of us have been concerned about with regards to SB7:
1. Managed care organizations don’t have experience with the IDD population.
2. The IDD population has specialized and complex needs
3. If a managed care organization makes a mistake with the IDD population, the results can be devastating.

The article also does a good job of showing the perspective from the managed care organization, something a number of us heard during the process leading up to SB7’s passage. Namely, that they say they won’t be cutting services. I always question how that’s possible if one is interested in being profitable – the motivation is different than services. In Kansas they also claim that while they don’t have experience with this population they are hiring experts who do have that experience.

The article talks about medical providers’ experience; namely, increased costs, increased bureaucracy, improper denial of services and reimbursements, etc. The result is that smaller providers and organizations cannot develop the infrastructure to handle this, which results in fewer choices for people with IDD and choices that might be really far away – especially considering the size of Texas.

With SB7 in effect and the various work groups and committees meeting on how to implement it, it’s important to read articles like this and to learn from other people’s experiences. It’s also important to participate, bother your legislatures, and let the policy makers know how you feel.

The system that provides services to individuals with Intellectual and Development Disabilities (IDD) is currently in a state of transition in Texas. With the passing of Senate Bill 7 in the last legislative session, the state is redesigning the system that provides waiver services to individuals with IDD and eventually moving those services to managed care. From conversations that the advocacy groups are having with some of these managed care companies, it’s already clear that there is going to be a large and painful learning curve for them with regards to how Texas operates and with regards to the needs of individuals with IDD.

I’m going to be the Chair of the Arc of Texas’ government affairs committee. When I spoke with the Arc’s leadership about this, I laid out my personal concerns moving into the next two years. As you can see from the list below, there is a lot going on right now:
1. Recap of the Legislative session. What happened, how will this impact families and individuals with IDD?
2. Keeping up with the implementation of SB7. The Devil is in the details.
3. Since SB7 is now a fact, how is managed care working in other states? What can we learn from the experience of other states and how can we apply it to take advantage of what works well and how can we avoid the problems?
4. Keeping up with the state supported living centers and the implementation of the Department of Justice agreement.
5. I’m thinking there was also a Department of Justice settlement about nursing homes…
6. In the spring, the Office of Civil Rights put out a dear colleague letter that potentially radically changes the landscape of kindergarten-university athletics for people with disabilities. This may greatly expand the access of individuals with disabilities to athletics in public schools and may also have some unintended long-term consequences to the Special Olympics.
7. If anyone could point me to some places to begin getting up to speed on education and transition issues I’d really appreciate that.
8. Finally, there are a lot of unintended consequences to legislation. For example, ECI as we know it is going to change over the next few years. By requiring families to pay more of the cost, and by having ECI bill insurance, the result is that families that can will begin going to private providers for ECI services. The current ECI providers are slow to adapt to these changes and may not survive… It would be good to be able to think through and anticipate some of these things.
9. Remaining flexible so we can respond to unanticipated topics as they come up…

For obvious reasons, the big issue is the implementation of SB 7. The question comes up about how to stay informed and how to have an impact on the process. There are a number of ways:

First, realize that much of the details of the implementation of SB7 will be handled by state policymakers and by the managed care organizations. However, there are advisory committees that have been set up to advise the state in these matters. The membership of those committees, along with contact information, can be found:
IDD System Redesign Committee: http://www.hhsc.state.tx.us/about_hhsc/AdvisoryCommittees/iddsrac.shtml
STAR Kids Advisory Committee: http://www.hhsc.state.tx.us/about_hhsc/AdvisoryCommittees/STAR-kac.shtml
State Managed Care Advisory Committee: http://www.hhsc.state.tx.us/about_hhsc/AdvisoryCommittees/smmcac.shtml

Second, your Legislators should be accountable to you about this. The major committees in the Senate and House that handle this are linked below:
Senate: Health and Human Services http://www.capitol.state.tx.us/Committees/MembershipCmte.aspx?LegSess=83R&CmteCode=C610
House: Human Services http://www.capitol.state.tx.us/Committees/MembershipCmte.aspx?LegSess=83R&CmteCode=C310

You should contact the membership of both and let them know what you think.

Finally, advocacy groups need your feedback so they understand what your needs are and how they can best be impactful in this time of profound change. The Arc of Texas is currently conducting a survey to get an idea of people’s needs and how they can address them via advocacy and policy efforts. This survey can be found at: http://www.thearcoftexas.org/site/Survey?SURVEY_ID=2602&ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&AddInterest=1044

It’s important to get involved and be heard. As I tell many people, it’s better to drive the bus than have it dropped on you!

In August, the Health and Human Services Commission of Texas published a report on their website. This report is an external quality review that was performed on STAR+PLUS home and community-based services. This is an extremely important and timely report because of the passage of Senate Bill 7 in the 2013 Texas Legislature, which will gradually shift the waiver services for individuals with Intellectual and Developmental Disabilities (IDD) over to managed care (i.e. STAR+PLUS). First, the full report can be accessed at: http://www.hhsc.state.tx.us/reports/2013/EQRO-STAR-PLUS-Waiver.pdf

This report was developed via a combination of surveying individual service plans (ISPs), telephone surveys, and face-to-face interviews. For the telephone surveys and face-to-face interviews, individuals whose ISP was studied were contacted. Of the 1207 people eligible, 202 returned surveys. Of those 202, 23 people from the Harris County area were interviewed in the face-to-face interviews.

The results are interesting:
• Almost 93% receive services at home.
• Almost 68% of members live with their families, almost 20% live alone, 10% live in an assisted living facility.
• The most used services are personal assistant services (95%), emergency response services (90%), and respite care (57%). The least used services are minor home modification (2.6%), meals (almost 4%), and dental services (4%).
• 28% of the members have some college education, a degree, or more than a college degree. 42% have a high school education or lower.
• 91% of the respondents have a caregiver that helps them with daily activities. 16% of those caregivers are unpaid family volunteers.
• The top five reasons for needing a caregiver include health, assistance looking after themselves, assistance with nutrition, assistance getting around, and assistance with daily activities.
• Almost 80% of the respondents identify their health as being fair or poor. Only 6.5% identified excellent or very good for their health.
• 67% of the respondents have moderate-to-high depressive sympotomatology.

The survey also looks at the service coordinators and the ISP:
• 84% of the respondents were satisfied or very satisfied with the help they received from their service coordinator in the past six months.
• Almost three quarters of respondents were included in the decision-making process of their ISP, were included in decisions about services, felt their ISP was respondent to their needs, and felt that their plan included services that were important to them.

In the face-to-face interviews, participants were asked about positive and negative experiences. The following negative experiences were reported by 31-45% of those people interviewed: poor communications, delays in care/services, poor phone experience, red tape, poor quality transportation, poor quality dental care, and poor communication with doctors.

Each service coordinator reported caseloads of 200-500 cases, per coordinator.

The study makes a number of recommendations:
• There should be more stringent standards regarding the frequency and methods of contact between service coordinators and members.
• There should be a reduction in caseloads of service coordinators (which will also allow for more frequent contact).
• Existing protocols for contracting with home health care, transportation, and other types of vendors should be evaluated to ensure high-quality service.
• There should be a vendor certification process to assist with quality.

The population studied includes Medicaid and some Medicare-eligible individuals. They may or may not have IDD. This is, however, very interesting as it may help map out potential concerns for the implementation of SB7. Concerns include service coordinator caseloads, depression, communications, delays in care/services, red tape, and some quality control issues.

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.

Senate Bill 7, which shifts the Medicaid waiver services for individuals with intellectual and developmental disabilities over to managed care organizations, has passed the Senate is has passed the House as of May 21. However, while in the House one of the representatives amended the bill in a major way. Representative Turner amended the bill by eliminating the redesign advisory committee, which would have been the mechanism for stakeholder input into what they new system will look like. Below is a copy of the letter that I sent to my representative about this as well as Representative Raymond, who oversees the House Human Services committee. Feel free to cut and paste and share with your elected leaders.

“I hope that this finds you both well.

As you are both aware, the House has been voting on SB7. Yesterday Representative Turner amended the bill by striking the IDD redesign advisory committee. This is a huge concern and without that committee I as a parent am unable to support this bill.

As you both know from my previous communications and visits with you, I feel that stakeholder input is absolutely critical to the long-term success of this bill for the state and for the people that will be receiving services. Without that stakeholder input, the state does now know what this population needs or how it experiences services. Without this input, the state does not know if managed care organizations are providing the services and the environment that this population needs. The redesign advisory committee provided an accountable mechanism to providing and receiving stakeholder input. Sweeping this into another committee that is not designed for this purpose is criminal.

Many parents like myself and many advocacy groups supported SB7 only because of the presence of that advisory committee. If that has been eliminated, then I can no longer support that bill and I strongly urge that Representatives Sanford and Raymond both withdraw their support of the bill.

Thank you for your time.”

Today I spent the day in Austin, largely at the state capitol.  This was an interesting day as there were a number of things happening:

  • Task Force for Children with Special Needs meeting
  • Senate Bill 7 hearing
  • Visits with legislators

Task Force for Children with Special Needs:

The Task Force is established by legislative statute and is a state-agency driven entity.  It’s purpose is to develop a strategic plan to meet the needs of children with special needs and is meant to integrate all the Health and Human Services agencies as well as agencies like the Texas Education Agency.  I was appointed by the executive commissioner of the Health and Human Services Commission as a parent member.  As a parent, I don’t get to vote but I do get to offer plenty of input, sometimes more frankly than the agency staffers are used to.

This was a short meeting because of the Senate Bill 7 hearing.  Basically it was to brief us on the Task Force’s two big initiatives.  The first is a comprehensive website, geared towards families, of the services available to children with special needs.  It’s meant to be a parent-friendly umbrella website that is easy to navigate.  More than that, it will have videos, information on developmental milestones as well as programs/services available by age (i.e. help prompt parents for the things they don’t know to think about), location of programs/services, etc.  It is also meant to have a regional component to help direct the parent to resources in their area.  The Task Force implemented a state wide research effort using focus groups, phone calls, and surveys and now the design of the website is in progress (funding for everything has been secured or is in progress with the current Legislature).

The second initiative is a crisis prevention/intervention service that would incorporate multiple agencies.  This is in the beginning stages of planning but it’s very needed and a great idea.

Senate Bill 7 Hearing:

DADS conducted a hearing on Senate Bill 7 this morning that ran at the same time as the Task Force meeting.  I decided ultimately not to attend this as I felt I’d be more impactful visiting legislators at the capitol (more on this later).  I’ve written everybody about my thoughts about this bill and I think the decisions have already been made on this one…

Visits with Legislators:

I spent about four hours visiting legislators, staffers, and committees.  I visited with mine, Sen. Paxton (staff) and Rep. Sanford (both the representative and his staff).  In addition I visited with Rep. Carter (staff) from Dallas, Rep. Raymond (staff), Sen. Nelson (staff), and both the Senate Health and Human Services committee staff as well as the House Human Services staff.

Let me begin by stating that I didn’t make any appointments with anyone ahead of time.  While this is courteous, I did not want anyone to have a chance to prepare.  I also, intentionally, came dressed as a parent of a child with special needs as opposed to a lobbyist.  So I showed up in khakis with a tie, but no expensive suits.  In each office, I walked in and announced that I am the parent of a child with Down Syndrome and I’d like to talk to someone about legislation and appropriations.

To start with my legislators, I spent a great deal more time with them and their staff than anyone else.  I focused my discussions with them around the following:

  • Senate Bill 7
  • State Supported Living Centers
  • Balancing Incentive funds

I think SB7 is going to pass.  So I had several talking points on this bill.  It has great intentions – more services to more people at reduced cost to the state.    Having said that, the devil is in the details and the people pushing the bill don’t understand the details, which is critical in this circumstance.  First, there needs to be significant stakeholder support at all stages.  That means as invited testimony (after all, the parents and family members – not the state agencies, are the experts on this topic), voting members of system redesign committees, and at each stage of legislation and rulemaking.  Second, there needs to be an understanding that this is an incredibly complicated population and service delivery driven by assessments is going to miss a lot.  I made the point that this population requires medical care, dental care, many types of therapies, 24/7 care, employment care, housing, etc.  To illustrate the complexity, I used an example from the state supported living centers.  Back when the Department of Justice issued its findings about the old state schools, it used two specific examples as examples of a lack of oversight by the schools.  In one example, a state school resident had been eating latex gloves.  In another, a different resident was eating the stuffing from a chair.  I used these examples and explained that they are examples of how profoundly some individuals with intellectual and developmental disabilities are affected and how difficult it’s going to be to assess this and come up with services to prevent it.  I made these SB7 point with everyone and every committee that I visited with, with two exceptions that I’ll talk about in a minute.  In each case, the people I talked to had no idea it was like this.

Regarding the state supported living centers, I focused on two things.  First, if we are going to have them we should do it right – which means strong funding and appropriate staffing for fewer of them.  Second, Sen. Rodriguez has filled two bills (one is SB 729) on evaluating the SSLC’s and establishing a realignment commission for them.  I wanted my legislators to know that I support both bills.

The Federal Government is making available ‘Balancing Incentive” (BIP) funds for Medicaid programs.  My understanding is that this is intended to be seed money to kick start efficiencies and better service delivery.  So, for example, the website I spoke about earlier is going to be funded by BIP funding.  The problem is that both the House and Senate appropriations committees are sweeping more programs into this funding (because the state doesn’t have to pay for it).  This is a problem because the funds will go away, so any on-going program will lose funding once that happens.  This happened two sessions ago with Federal stimulus funding and ECI – ECI was ramped up and expanded with that funding, but after it went away it had to be cut back because the state would not make up the difference.  This is a concern with BIP funding.

I visited with Rep. Carter’s staff.  She is on the House’s appropriation’s committee for Article II (health and human services).  I had written each of them about the need to fully fund ECI, which they did.  She wrote me back, so I visited to say thank you.  I also put in my $0.02 about the BIP funding that I mentioned above with her staff.

Rep. Raymond is the chair of the House Human Services committee.  His office will either craft its own version of SB7 or receive the Senate version once the Senate passes it.  I spoke with his staff about the points I described above.  After meeting with me, they asked me to go talk to the Human Services committee staff about this, which I did.  This (the committee meeting) was one of the longer meetings that I was in today.

As the author of SB 7, I dropped by Sen. Nelson’s office.  Her office made it clear that they are not the ones listening to feedback about this bill and that I should go speak with the Senate Health and Human Services committee staff (which is located in another building).  I did this, and they let me know that the only person qualified to listen to feedback isn’t available – but I’m welcome to email (which I will).  I think it’s evident that the good senator is no longer desiring to hear feedback about what she set in motion from normal people.

I appreciate the time that everyone (with one exception) gave me.  I think I was able to make the points about the need for significant stakeholder involvement combined with an appreciation for how complex these matters are, while everyone has great intentions there’s a real lack of understanding about the things they are trying to change.  I’m also very happy because I have lots of contacts, who will be receiving my thoughts on these matters as the session progresses!

Below is from a letter that I sent to a number of Texas legislators concerning Medicaid reform in Texas:

Between the passage of Senate Bill 7 in the last special session, federal and state budget challenges, and the many hearings that are currently taking place in the Legislature, there are significant changes to health care as it impacts children with special needs in Texas. I am writing this letter because I have concerns that the Legislature, while having good intentions, is missing several important opportunities in their current efforts to combat inefficiency, rein in costs, and still provide services to children with special needs.

I am a parent of an almost five-year old with Down Syndrome. I have also been appointed as a parent member to the Children’s Policy Council (established by HB 1478 of the 77th Legislature), the Task Force for Children with Special Needs (established by SB 1824 of the 81st Legislature), and the Early Childhood Intervention Advisory Committee. Not only am I living this as a parent, but I’m also involved in attempting to change things to provide better services to children like my son.

Senate Bill 7, passed by the 2011 Legislature in special session, serves as an example of increasing government waste and inefficiency while attempting to reduce it. The bill seeks to reduce Medicaid and health care issues impacting children with disabilities to a handful of outcome measures in order to simplify an enormously complex problem. In so doing, it requires no less than 14 different reports, studies, and assessments and sets up new government entities that will require ongoing funding diverted from areas that could be providing direct services to children with disabilities.

Each of the reports that SB7 requires (some are for the Legislature, some for the Governor, most are for both) will require staff time to collect data, analyze data, compile reports, brief agency officials, and prepare agency officials for Legislative testimony. Each of these reports will lead to situations where state agencies will seek new streams of information from health care providers in order to satisfy the needs of the reports for data. The combination of all of these efforts will mean that more resources are being devoted to collecting, analyzing, and reporting data rather than providing services to children with special needs. While the Legislature’s desire for knowledge is admirable, I question how influential this data will ultimately be in the decision-making process.

SB7 also requires a number of studies by HHSC and DADS. These are described in sections 1.02 (patient centered medical homes, external quality reviews, payment incentives), 1.09 (physicians incentives), 1.12 (performance incentives based upon outcome and process measures), 3.01 (outcome measures of quality and efficiency), 6.05 (preventable events for hospitals/long-term care facilities), 6.07 (data by facility), and 6.08 (study on incentives and recognition of health care quality). While the intent behind these studies is admirable, they will result in health care providers spending more time and resources on these and less on direct services and it is unclear that these studies will uncover any information that is not already known.

Given the budget situation in the state of Texas I am concerned that by establishing the Texas Institute of Health Care Quality and Efficiency, SB7 will be diverting funding from state agencies that provide services to children with disabilities and using it to fund a new entity that does not provide any services.

As the members of the Legislature know, Early Childhood Intervention (ECI) due to funding challenges, moved to a model of shared costs and personal accountability similar to what is described under Article 13 of SB7 for Medicaid reform. This is having a damaging effect on providers of ECI services and access to ECI services.

It is critical that as the state of Texas moves forward with changes to Medicaid and health care, that stakeholder input be sought early enough that stakeholders can impact the process. Frequently stakeholder input is sought at the end of the process, once the state agencies have developed the final product. At this point, input is too late and important things will be missed. For example:
• On March 1, HHSC changed the dental Medicaid program to a managed care model. But in so doing, did not account for the fact that many children with special needs have to be treated in a hospital setting because there is a shortage of dentists who are wiling to accept and treat children with special needs. In addition, there are serious complications that involve balancing between the Medicaid model (which can often be a secondary insurer) and a primary insurer. Had stakeholder input been sought early in the process these issues could have been anticipated and addressed.
• On March 1, HHSC changed the model for providing pharmacy services to children enrolled in STAR, STAR+PLUS, and CHIP. This model failed to account for the fact that children with special needs may require medically necessary drugs not on the preferred drug list, may need compounded drugs, may need home delivery of prescription drugs, may need specialty pharmacies, may need medical equipment through their pharmacy, etc. Had stakeholder input been sought early in the process, these issues could have been anticipated and addressed.

This should also be done in terms of any strategic plans and Legislative Appropriation Requests. I urge the Legislature to require the health and human services agencies to solicit and incorporate stakeholder input early and often in their planning process, well before any finished product is rolled out.

Finally, it is important that future planning with regards to health care, Medicaid, and the improvement of services for children with special needs must be integrated. Often, these planning efforts are disconnected or driven by whim and this ensures that they will fail. Committees can draft reports, they can develop plans, but if they are not integrated and supported by the state agency strategic plan and the Legislative Appropriation Request then they are doomed to failure.

Thank you for your time, thank you for your service to Texas in undertaking this complex and difficult matter.