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Monthly Archives: February 2013

In an earlier posting, I wrote about state Senator Nelson’s Senate Bill 7 (see https://jcissik.wordpress.com/2013/02/07/senate-bill-7-long-term-redesign-an-open-letter/ ) which redesigns long term services and supports for individuals with intellectual and developmental disabilities and seeks to shift all these services over to managed care.  The intent is to improve access to services, eliminate the interest lists, and improve the quality of care.  All this will done in a manner that saves the state of Texas money.

A lot of people are very concerned about this bill.  Many of the advocacy organizations are torn with how to proceed.  Some feel the bill should be opposed; we need a smarter, more person-centered system and not a radical shift to managed care.  Other organizations feel this is inevitable, so the bill should be supported but they should work behind the scenes to get the best “worst” bill that we can.

The bill was heard in committee on the 26th of February.  Senator Nelson discussed the fact that she has received a lot of feedback, very little of it positive.  Her remarks throughout the hearing give me the impression that no matter what the feedback is, she feels this bill is a good idea and it’s going to pass no matter what.

The hearings began with statements by Senator Nelson.  She had prepared a committee substitute to the bill (I’ll talk about this later).  She had a panel of experts testify on the bill, none were parents or spouses of people with intellectual and developmental disabilities and none had IDD themselves.  She then took a break from other testimony on the bill to give people a chance to review the committee substitute and ask the state agencies questions.  After a several hour break, public testimony began.

Some people are supportive of the bill.  This ranges from family members to people that will make money off the bill.  Many people were concerned about the bill.  Their concerns hinged on a few things that the committee heard over and over again:

  • The State Supported Living Centers (SSLC’s) are not included in the bill.  This is a big deal because it is many times more expensive to keep someone in the SSLC’s than to take care of them in the community and the SSLC’s do not provide many times the quality of service.  In other words, huge resources are being taken out of the system to serve a few in the SSLCs and to be unwilling to even discuss this reflects a lack of seriousness for reforming the system.
  • There are real concerns with managed care.  The state uses STAR+PLUS to provide managed care to Medicaid recipients.  Senator Nelson and the members of the committee didn’t actually consult with any STAR+PLUS recipients to see how well this works.  The feedback was not good on this program; lack of access to doctors, lack of consistent case management, long waits for services, that sort of thing.
  • The use of a medical model.  Basically the concern is that IDD is not a disease or medical condition to be treated.  Individuals with IDD need help and support over the course of their lives and the medical model, and managed care, aren’t appropriate ways to provide this.
  • Experience with other states.  This is the interesting point, if I was going to transform long term services and supports I’d find out what other states do and get feedback on how well this works.  Turns out the feedback on using managed care with the IDD population from other states isn’t very positive.
  • Finally, there’s a real concern over stakeholder input.  The people receiving and relying on the services should help to design the system.  This is because while Legislators and agency employees have good intentions, they don’t understand how it works or doesn’t work.

The committee substitute changes some of the language, slows the process down greatly, implements an advisory committee to assist with redesign (this is the key stakeholder input piece), and includes housing, employment, and person centered planning.  All of which are positives.

What can you do?  First, read the bill (the link is here:  http://www.capitol.state.tx.us/BillLookup/history.aspx?LegSess=83R&Bill=SB7 ).  Second, write or call every member of the Senate Health and Human Services committee with your feedback and thoughts (the link to the list of members is here: http://www.capitol.state.tx.us/Committees/MembershipCmte.aspx?LegSess=83R&CmteCode=C610 ).  Third, contact your representative and senator and give them the same feedback.  Finally, share this information with other parents, brothers, and sisters and have them do the same.

I really get the feeling that they are going to ignore feedback and pass this no matter what…

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We’re about two weeks away from one of the filing deadlines for the 83rd Texas Legislature, so it’s a good time to review what’s going on.  We’ll spend the bulk of this blog covering legislation and trends.  Keep in mind that at this point some bills are being heard in committee, but none have been passed.  Just because legislation has been filed does not mean that it will amount to anything. 

 

Budget:

Unlike the 82nd Legislature, both the House and Senate bills provide for an increase in funding to DADS and DARS.  Now, the funding isn’t enough to reverse the cuts from the last session and are never enough, but at least this is going in the right direction.  DADS, DARS, and HHSC all have exceptional items to help improve long term services and supports and those are being heard and considered (some positively) by both the House and Senate. 

 

Regarding legislation, we’ll focus on several areas:

  • Education
  • Medicaid
  • State supported living centers (SSLC’s)
  • Miscellaneous

 

Education:

There are a number of bills that would lower the age where transition services begin to 14 and that would require schools to have a point person for answering transition-related questions.  This type of legislation has been filed in previous sessions.  In addition, there is legislation attempting to establish a school choice program for children in special education, one bill by Sen. Lucio that would require professional development with regards to working with children with special needs, and one concerning one by Rep. Ratliff that would allow for the establishment of disabled charter schools (this would seem to eliminate a child’s ability to receive an education with his/her non-disabled peers).

 

Medicaid:

If half of this legislation passes, this session will see a major change in Medicaid programs and long-term services and supports.  First, I’ve already blogged about Senate Bill 7 which would eventually transfer all the waiver programs over to managed care.  This looks like it is going to happen and the advocacy groups are torn between opposing it and recognizing its inevitability and seeking to get the best worst bill that they can.  Other bills address Medicaid fraud, requiring STAR+PLUS and managed care organizations to be subject to differing levels of review, some address long term services and supports, and others would tinker with the coverage that people receive.  As the parent of a child with a disability, I’m really concerned about this entire section and everyone else should be as well.

 

State Supported Living Centers:

By and large there are no major changes based upon legislation.  The Legislature has historically been reluctant to even address closing or consolidating the centers, as a result there is frequently legislation to provide band aid fixes.  Now, there’s one exception that really stands out.  Sen. Rodriguez filed SB729, which would seek to establish a SSLC closure and realignment commission (think about what happened to military bases in the 90’s).

 

Misc:

There are sunset review bills for health and human services agencies, bills that would seek to outsource the functions of those agencies, a lot of bills that deal with long-term service and support allowances, therapies, prescription drug benefits, licenses for facilities, and personal needs allowances.

 

I think a good summary of this session to date is that there is an intent to really change the waiver programs and shift them over to managed care.  The intent is to reduce/eliminate interest lists and strive for efficiency.

 

 

Below is a letter that I sent to each member of the Texas Senate’s Health and Human Services Committee about Senate Bill 7, which seeks to shift care for individuals with intellectual and developmental disabilities over to managed care companies.

I am writing about Senate Bill 7.  Your office has heard from me in the past about matters relating to appropriations and policy.   I am writing to you as the parent of a five-year old with Down Syndrome.  As such, this bill has a great many implications for the future of my child.

Let me begin by saying that I applaud the intent behind the bill and I think that it is necessary.  Eliminating the waiting lists, improving access to needed services, and making the system more efficient are all needed goals.  Having said that, there are several areas of concern which I feel that Legislators should keep in mind as they move forward with this reform of the long-term services and support system:

  • The need for stakeholder input
  • The complexity of the cases
  • The size and diversity of Texas

The need for stakeholder input:

There is a disconnect between the good intentions of legislation, how state agency implement those intentions, and how parents and individuals with intellectual and developmental disabilities experience those intentions at the hands of providers.  Legislators need to understand and hear this in order to craft better legislation and to provide better instructions to state agencies.  This can only be done via stakeholder input, by this I mean input from the parents of individuals with intellectual and developmental disabilities.  This can and should be done a number of ways; first, parents with experience in STAR+PLUS and that have children with IDDs should be invited to testify as experts in front of the Health and Human Services Committee.  This is essential so that the committee hear the strengths and shortcomings of the current system from the experts.  This also gives parents a chance to explain their experiences and provides a stronger question and answer format from policymakers.  Second, the state agencies should be required to have parents serving on all the task forces and oversight boards that will be par of implementing SB7.  This will give the agencies a perspective that they often lack.  Third, the state agencies should be required to implement these changes via changes in rules that require public comment.  The combination of these steps will give stakeholders a chance to have input throughout the process and will result in a stronger long-term care system being developed.

The complexity of the cases:

Managed care is designed around the law of averages.  For example, if you break your leg then on average it will require certain treatments and take a certain amount of time to heal.  If, after the healing process, you have challenges with strength or range or motion then there are tests to be performed and rehab can be prescribed based upon the law of averages (X deficiency requires Y number of rehab sessions).  If you situation is outside the norm, then there are procedures to request additional treatments.

Individuals with IDD are all different.  They are all over the spectrum in terms of how their disability impacts them, how receptive they are to therapy, and what their needs are.  IDDs do not lend themselves to “treatment” based upon the law of averages.  As a result of this, any system that is designed is going to have to be incredibly flexible.  This can be accomplished by getting stakeholder input in the design so that policy makers and implementers understand what is needed and by carefully screening potential managed care organizations to ensure they have experience with this type of population.

Texas is a big state:

Legislators don’t need me to remind them of the size of Texas.  But it’s important to understand that there are still a large number of small towns and rural areas that do not have the same access to services as large urban areas like Dallas.  A managed care system has the potential to work fine in a large city, but be a disaster in west Texas or east Texas due to a lack of access to providers.  It also must be understand that the huge cultural and language diversity of Texans has the potential to complicate managed care and this must be taken into account when designing the system.

Thank you for your time and efforts on behalf of Texans.  I appreciate your desire to help increase my son’s access to services and the quality of his life, but I want to ensure that the new system is designed in a way that understands that he is not a number that needs to be treated.