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State agencies in Texas are required to go through a review process (called the Sunset Review) to determine if they are still needed and to look at the agency’s performance. In general this occurs every 12 years. Currently, the Health and Human Services agencies in Texas are undergoing this process. This post deals with the Sunset Review’s report on the Department of Aging and Disability Services (DADS). This is not meant to be a comprehensive summary of the report, in fact you can access the report below:
https://www.sunset.texas.gov/public/uploads/files/reports/DADS%20Staff%20Report.pdf

DADS provides most of the long-term care and support for individuals with intellectual and developmental disabilities.

This post is going to deal with the following recommendations of the report:
• The state supported living centers
• Transitioning from state supported living centers to the community
• Ensuring adequate care in the community
• Enforcing violations
• Contract management

State Supported Living Centers (SSLCs):
SSLC residents account for less than 1% of the agency’s clients but represent 10% of DADS’ budget and 80% of its workforce. As of September 2013 there were 3649 residents and 13,906 staff being funded by almost $563 million. The report reviewed some of the issues with the SSLCs:
• No SSLC is in compliance with the Department of Justice settlement agreements from 2009. The SSLC range from being in compliance with 18% of the requirements (Richmond) to 40% (Lubbock).
• The number of confirmed allegations of abuse, neglect, and exploitation at SSLCs is shocking and in 2013 represented 15% of the population of the SSLCs.
• In 2002, the SSLC population was a little over 5,000 residents with a funding around $300 million. In 2013 that population was 3649 with appropriations coming close to $700 million.
• All of the SSLCS, except one, require infrastructure repairs that will cost more than the SSLCs are valued at. Only Denton is valued at more than the cost of its infrastructure repairs.
• Almost 10% of SSLC employees are injured annually.
• The average monthly cost for serving a resident of an SSLC is approximately $9500 than a community option.

As a result of the above, the Sunset Review report recommends the following:
• Close Austin SSLC by August 31, 2017
• Establish a closure commission to evaluate the SSLCs and determine five more to close
• Close five more SSLCs by August 31, 2022

Transitioning from SSLCs to the community:
The report notes that many individuals in SSLCs have complex behavioral, mental health, and medical issues. With that in mind, certain supports need to be in place to successfully move them from a SSLC to the community. As a result, the report recommends:
• Requiring DADS to establish crisis intervention teams statewide
• Require DADS (and HHSC) to reimburse services appropriately so that providers will open group homes to people with high medical needs
• Allow SSLCs to provide services to community clients

Ensuring adequate care in day habitat facilities:
This recommendation affects almost 35,000 individuals in community settings. The report finds that DADS doesn’t really monitor day habitat facilities and that the agency’s rules vary across program so there are no quality or safety standards. As a result, the report recommends:
• DADS develop basic safety and service requirements for community based programs. The report suggests things like running fire drills, running background checks on employees, following the client’s plan, etc.
• Require that abuse, neglect, and exploitation be tracked.
• Track data on services offered and deficiencies.

Enforce violations:
In fiscal year 2013, DADS took enforcement actions on only 225 out of 38,000 confirmed violations of state regulations, federal regulations, and Medicaid contracts. Among other issues, DADS has inadequate penalties to deter violations, has difficulty collecting them, and has a serious backlog in cases. The report recommends:
• Develop progressive sanctions for serious or repeated violations
• Repeal the “right to correct” provisions for providers and require DADS to define the criteria for their appropriate use.
• Authorize higher financial penalties to incentivize compliance.

Contract management:
DADS’s approach to managing contracts is fragmented which results in a lack of information, accountability, and inefficiency. This also creates cost over runs and project delays. The report recommends:
• Require DADS to consolidate all contract management
• Have the centralized contract management review and approve contract planning during the early stages of the procurement process
• Develop policies for the risk-based monitoring of contracts

Taken together, the findings and recommendations show you just how bad things are for individuals with IDD in Texas. The SSLCs are bad, the community settings are better but are unregulated and have little incentive to prevent/address deficiencies, and the agency has challenges with oversight and protecting/serving individuals with IDD. This report comes out while we’re transitioning people with IDD to managed care and it is chilling to think how much worse things can get under that system if they are already this bad.

The report provides some opportunities, however. First, realize that just because it is in the report does not mean that the state is going to act on it. This means contacting your legislator and dragging them, kicking and screaming, towards supporting its implementation. Second, the advocacy groups should be aligning some of their legislative foci around these recommendations. This way the Legislature hears the same thing from everyone. Third, SB7 (managed care) is only legislation, it is only a law. This means it can be changed via legislation. Maybe it’s time to get the Legislature to revisit it, slow it down even more, or even kill it in the upcoming session.

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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!

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 Legislature has released their budget bills, House Bill 1 and Senate Bill 1.  When passed, these bills will be the funding for state agencies in 2014 and 2015.    This information is important because it has an impact on the various state agencies to provide services.

 

In the current biennium (2012/2013), the Department of Aging and Disability Services is receiving approximately $12.5 billion in funding for providing long-term services and supports to the aging, disabled, and individuals with intellectual and developmental disabilities.  For the upcoming biennium (2014/2015), DADS has asked for $13.5 billion (or an 8% increase).  Both HB1 and SB1 fall well short of DADS’ ask.  HB1 provides for $12.7 billion (or a 1.8% increase over the current biennium), SB1 provides for $12.59 billion, or a .6% increase over the current biennium.

 

There are a number of programs that are seeing reductions in HB1 and SB1.  These include:

  • Primary home care (~50% 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 (~24% 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.
  • State Supported Living Centers (~3% reduction)

 

There are also a number of programs that are seeing increases in HB1 and SB1, these include:

  • Community Attendant Services (11% in HB1, 6% in SB1): Seems to be balancing out the reduction in primary home care.
  • Home Community-Based Services (HCS) (7% increase)
  • Medically Dependent Children (4.6% increase)
  • Nursing Facility Payments (3.4% in HB1, 2.2% increase in SB1)
  • Medicare Skilled Nursing Facility (14% in HB1, 8.7% in SB1)
  • Hospice (7.4% in HB1, 5.5% in SB1)
  • Balancing Incentive Program (140% in both bills)

 

Basically these recommendations reflect a shift to providing services via managed care (see Senate Bill 57 for an example of what this could look like).  For some populations, this may be a good thing.  For individuals with intellectual and developmental disabilities, this may or may not be helpful.  There are several concerns with this.  First, managed care is using a medical model to treat diseases and apportion services accordingly.  People with IDD’s don’t have a medical condition that needs treated, so it’s difficult to fit their long term needs into a managed care setting.  Second, managed care organizations may not have experience with the IDD population, which may profoundly impact services.  Third, it’s unclear if managed care can quickly react to changing situations with people with IDD and provide the fast, flexible services that they sometimes need.

 

While both HB1 and SB1 provide an increase in funding (which is a positive), they do not come near to addressing the needs to the aging and disabled in Texas.  Now, neither budget bill is set in stone.  There will be lots of opportunities for input.  First, you can contact your representative and senator and provide feedback.  Second, there will be plenty of budget hearings over the next few months where written testimony and in-person testimony can be provided.  The budgets will go through a cycle of hearings, adjustments, and both the Senate and House versions will need to be reconciled before it goes to the Governor for his signature.