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Tag Archives: long term services and supports

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 .


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: ) 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.

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:

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.

There are several important bills that have on the state supported living centers (SSLC’s) that have been filed in the Legislature this session.  All of these bills have been filed and referred to committee, but all the bills are just sitting there waiting for a committee hearing.  These bills deal with the following topics:

  • Creating a SSLC realignment commission
  • Evaluating the SSLC system
  • Developing criteria for the closure or consolidation of the SSLCs


Creating a SSLC realignment commission:

In the Senate, SB 729 by Rodriguez seeks to create a SSLC realignment commission. In the house it is HB 3528 by Klick.  These bills would establish a realignment commission to evaluate and make recommendations regarding the operation and management of the SSLCs, would make recommendations on the consolidation or closure of SSLCs based upon criteria established in the bill, and oversee the implementation of its recommendations.  Members would be appointed by the Governor.


Evaluating the SSLC system:

In the Senate, SB 1045 by Rodriguez and in the House HB 3312 by Collier seek to direct the Health and Human Services Commission to contract with an outside entity to evaluate the SSLC system.  This evaluation would include examining the proximity of SSLCs to community service providers, administrative costs of operating SSLCs, availability of employment opportunities for SSLC employees should a SSLC close down, conditions of both the SSLCs and community service providers, capacities of other SSLCs and community service providers should a given SSLC be closed, examining whether specialized services and programs at a given SSLC can be conducted in the community, support needs of residents in a SSLC and whether those are available in the community, etc.  In other words, these bills seek to give decision makers the information that they need to make unemotional decisions about the future of the SSLCs.


Developing SSLC closure criteria:

In the Senate, SB 1766 by Rodriguez and HB 3527 by Klick in the House seek to direct the Health and Human Services Commission to develop a formula-based approach to determining when a SSLC should be closed or consolidated with another SSLC.   These bills also include instructions on how to consolidate the SSLCs provided that seven of the thirteen are closed down.


All three of these bills are important.  The realignment commission develops an independent group to make the decisions.  The evaluation bills provide the information that is needed to make objective decisions about this emotional topic.  The criteria allows the comparison of apples to apples.  None of these bills requires that SSLCs be closed or consolidated, but they do lay the groundwork for this to occur and could perhaps incentivize and improvement in services and supports.

None of these bills are currently scheduled to be heard in their committees.  If this is something that you feel strongly about, contact the members of both committee about this.  To find the members of the committees, click on the following:

Senate Health and Human Services Committee membership:

House Human Services Committee membership:


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:

In an earlier posting, I wrote about state Senator Nelson’s Senate Bill 7 (see ) 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: ).  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: ).  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…

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. 



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



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).



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).



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.

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.