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Monthly Archives: March 2013

Below is from a letter that I wrote to me state representative and senator about legislation moving through the Texas 83rd Legislature. All these bills deal with education and potentially impact parents and students with special needs, some in good ways and some in concerning ways.

The first bill is HB 617 by Rep. Rodriguez. This bill has been voted out of committee and is currently awaiting movement through Calendars. This bill deals with transition for individuals with special needs from public school to life after and as such is a really important bill. This bill would require each school district to designate at least one employee to be the transition point-of-contact to provide information and resources. The bill would also require a transition guide that would be posted electronically. HB 617 makes a lot of sense and is something that is needed. It makes logical sense to have a point-of-contact who is knowledgeable and accountable for helping parents and students to wade through the maze that is transitioning from public school to life after.

The second is SB 710 by Sen. Lucio. This bill has been referred to the Senate’s Education committee but does not have a hearing date yet. This bill would establish professional development institutes for education public school teachers and paraprofessionals on research-based instructional services for students with disabilities. This is another potentially very important bill. With the exception of special education teachers, most public school teachers and paraprofessionals are not trained to work with children with special needs, which makes mainstreaming and effective instruction very difficult. An institute that would help to train teachers and paraprofessionals would potentially increase the quality of the services that children with special needs receive in public schools.

Both HB 617 and SB 710 potentially provide important services for parents and public school students, but both come with price tags. HB 617 would probably require school districts to hire additional staff. SB 710 would also have significant cost implications. Nevertheless, their potential positive impact would seem to outweigh any fiscal concerns.

The third and fourth bills are identical bills, SB 816/HB 1802 by Sen. Hegar and Rep. Huberty. SB816 has been referred to the Senate’s Education committee, but does not have a hearing date yet. HB 1802 has been referred to the House’s Public Education committee, but does not have a hearing date yet. These are extremely concerning bills. These bills change the timing of an evaluation for special education services from 60 calendar days after receiving consent for an evaluation to 60 school days. This is actually a big deal as it means there is the potential for a three to four month gap between the consent for an evaluation and the evaluation. Potentially this means there may be a three to four month gap where there is no evaluation to drive a child’s individualized education plan. In other words, the educational services they are receiving may not be meeting their needs as there is no assessment to document what their needs are.

Three to four months is a huge chunk of the school year and a missed opportunity for the child, they will not be able to get this time back. I understand that the motivation behind these bills is to make life easier for the school districts, I don’t feel that my child’s education and future potential should suffer in order to make the lives of the school districts easier.


Two identical bills have been filed in the Texas Legislature relating to Early Childhood Intervention (ECI).  The first is HB 1098 by Rep. Zerwas, the second is SB 1060 by Sen. Nelson.  These bills read like it is their desire to make ECI profitable.  As I read them, these bills have two parts. The first part (section 117.077) requires the Department of Assistive and Rehabilitative Servcies (DARS) to study the cost-effectiveness of the family cost share system of ECI.

As background, after the budget cuts in the last legislative session, DARS adopted a sliding family cost share for ECI based on family income.  This was one of their strategies to continue prvoding services in the face of the budget cuts.  The first part of this bill reads like it’s attempting to make ECI profitable (cost-effective means that family cost share revenue is greater than total administrative costs):
• DARS is required to collect data which lets them determine this information and evaluate the cost-effectiveness of the program.
• DARS is required to consider changes to make the program more cost-effective but may decline to make them if DARS does not feel that these changes will make the program more cost-effective.
• DARS is required to report on this by December 2014.

Now, this section gives DARS some wiggle room:
• “Total administrative costs” is not defined in the legislation. For example, is that the cost of DARS oversight? Or is it ECI provider expenses for providing the service (therapists, front office staff, case supervision, etc)? Or just partial expenses of providing the service (for example, only office staff but not therapists)? Etc.
• If DARS does not judge it possible to make the program profitable they do not have to implement the changes.

The second part (section 117.078) is a little more concerning and instructs DARS to consider implementing family cost share provisions based upon the family’s size and adjusted gross income with families in higher income brackets being required to pay more that those same families paid before this bill’s implementation. This family cost share is already in progress based upon family income, but I’m reading this as a requirement to increase those amounts. Now, the legislation instructs DARS “to consider” doing this, as opposed to saying that DARS must do this, so there’s some wiggle room. But the legislation represents the Legislature’s philosophy that families should be paying for more of these types of services.

The Legislature is seeking new ways to provide these services as well as the Medicaid services.  The idea being to control expenses and provide more services to more people.  In this legislation, the intent is to use the profits of the family cost share to provide more services to more children.  HB 1098 is being heard in the Human Services committee of the House on Tuesday, 3/12/13.

The filing deadline for legislation in the 83rd Texas Legislature is coming up fast. There are two new bills that have been filed that have implications for the intellectual and developmental disability community. The first is a relatively short bill by state Senator Rodriguez, the second is a very long bill by state Representative Raymond.

Senator Rodriguez has previously filed two important bills on the state supported living centers. One, SB 729, would establish a realignment commission for the centers. Another, SB 1045, would allow for the system to be evaluated. Both bills are important bills. On the 7th, Senator Rodriguez filed SB 1361, which is a bill of rights for people receiving Medicaid long-term services and supports. This bill is important especially in regard to the changes to the system that are in progress via legislation. The bill begins with the statement that: “It is the policy of this state that, to the extent provided by state or federal law or policy, each recipient of Medicaid long-term services and supports under a state benefits program has the right…” It goes on the list things like living independently, control the recipient’s own life, receive the supports necessary for competitive employment, be a participant in designing/implementing/monitoring the outcomes and effectiveness of delivery systems, receive services that are based on their individualized needs, receive services that are monitored for quality, to receive services that are effectively coordinated, and that allow individuals to retain their existing providers. Some of this bill is philosophy, which is fine, but some of it would provide some safeguards especially in light of the possible shift over to managed care.

Representative Raymond, who is the chair of the House’s Human Services committee, filed HB 2721. Essentially this is the House’s version of Senate Bill 7, which would shift the acute and long-term services and supports for the waiver recipients (HCS, CLASS, TxHmL, and DBMD waivers) over to managed care. Like SB7, the bill has great intentions. The goals include provide services to more individuals in a cost-effective manner, improve access to services, promote person-centered planning, integrate service coordination, promote high-quality care, etc. Like SB7, this is a huge bill and will have a major impact on people with IDD and their families.

Let me begin with the things that I like about this bill. First, there are extensive stakeholder input requirements in the bill:
• Like SB7, it would establish a system redesign advisory committee that would include stakeholders. This committee has an important role all through the process, basically up until 2024.
• Like SB7, the state will roll out pilot programs to test the concept. Stakeholder input is required on the pilot programs.
• HHSC is required to receive and evaluate stakeholder input when transitioning each of the waivers over to managed care.
• Stakeholder input is required for developing a quality-based payment plan to providers.

Second, the bill emphasizes the need to ensure there is continuity of care when transitioning from the old waiver programs to the new managed care approach. Third, when discussing acute services, the bill states that HHSC will use STAR+PLUS “or the most appropriate integrated capitated managed care program delivery model.” So there is some wiggle room on using STAR+PLUS. Fourth, the bill mentions implementing basic attendant and habilitation services. Fifth, and this is needed, the bill will establish specialized training for family members/caregivers/providers of people with IDD that are at risk of institutionalization and behavioral intervention teams to help prevent institutionalization. Finally, the bill provides for a wellness screening program to help prevent diseases.

So there are some things to like about HB 2721. There are also concerns. It’s a huge bill and a sweeping change and the Devil is always in the details. People with IDD have complex, varied needs. No two are the same, it’s more complicated than breaking a leg. It’s also something that cannot be fixed or treated, it requires a life-long, continuous approach to services. It’s unclear how effective any managed care organization is going to be. The current system is incredibly complex to navigate, add transition and having to learn a new system on top of that and family members will be confused and overwhelmed.

Some version of this bill or SB 7 will probably pass and become the future. With that in mind, input is critical at every step of the process. That starts now by contacting your legislators. That continues by having strong advocates on the system redesign committee and by providing input in every way possible about concerns and experiences. It must be kept in mind that the people drafting the legislation and eventually the rules and procedures don’t have first-hand experience with this system and don’t understand how complex the services are for individuals with IDD. As a result it’s very important to educate them about this.

Regarding Senator Rodriguez’s bills, they will have to pass through the Senate Health and Human Services committee. Below is the link to that committee, listing every member of the committee. Contact them about your thoughts on these bills:

Regarding HB 2721, this will pass through the House Human Services committee. The link is below, again contact each member about your thoughts:

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!