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Category Archives: Disability

Over the past few months, the Texas Sunset Commission has issued reports and recommendations about each of the agencies under the Health and Human Services umbrella. For example, here’s a write up I did about their recommendations for the state supported living centers: and here’s one for the Department of Aging and Disability Services: /

The Texas Sunset Commission has completed its review and recommendations for the Texas Health and Human Services Commission (HHSC). The full report can be found here: . The Sunset Commission issued 15 recommendations pertaining to HHSC, only a few of which will I discuss in detail:
• Health and Human Services agencies should be consolidated
• Medicaid can be administered better
• Participation in Medicaid by providers is being discouraged
• There is a need to improve quality of health care
• There are too many advisory committees

The Health and Human Services system has expenditures of almost $35 billion annually with 54,000 employees. This is spread out across five agencies. It is the Sunset Commission’s opinion in their report that the size and scope of the five agencies creates blurred accountability, fragmentation of programs and services, “organizational misalignment,” ineffective regulatory services, and some real challenges with the current organizational structure of the enterprise. For example, the report mentions that the Department of State Health services has a focus that is too broad, the existence of the Department of Aging and Disability Services is questionable after Senate Bill 7 (managed care), and the Department of Assistive and Rehabilitative Services has too narrow of a focus and some of its programs and services are duplicated by DADS.

As a result of the above, the Sunset Commission recommends:
• All the agencies be consolidated into one.
• Organize the new entity along functional lines:
o Central/support services (i.e. administrative support)
o Medical and social services
o State institutions and facilities
o Family and protective services
o Public health services
o Regulatory services
o Office of inspector general
• Establish a policy and performance office

Medicaid can be administered better:
The Sunset Commission found the Medicaid is fragmented because it is administered by DADS, DSHS, and HHSC. This leads to a lack of communication, a lack of policies and program administration, duplication, and inefficient delivery of services. The recommendation is to consolidate all the Medicaid programs (waivers, entitlement programs, YES waiver, etc.) to HHSC, which falls in line with the consolidation recommendation above.

Participation in Medicaid by providers is being discouraged:
According to the Sunset report, only 31% of physicians are willing to accept new Medicaid clients. The report finds that it is too difficult to enroll (it may take three to twelve months to navigate the state’s system and become enrolled as a provider), there are huge administrative burdens on the part of providers, and the reimbursement rates are low. As a result, the Sunset Commission is recommending that HHSC streamline and centralize the provider enrollment process, streamline the criminal history process and require a fast (10 day) turnaround.

Health care quality:
According to the Sunset report, there are 270 different initiatives to improve the quality and outcomes of Health and Human Services programs and services! This creates a lack of focus, administrative burdens, inefficiencies, and missed opportunities. The Sunset Commission recommends that HHSC develop a comprehensive, coordinated plan to ensure consistent approaches for improving the quality of health care and require HHSC to pilot incentive-based payments by managed care organizations.

Advisory committees:
HHSC has 41 advisory committees. In 2013 this amounted to 189 meetings, 16,700 staff hours, and cost the state $800,000. Most of these committees are established by legislation and have reporting requirements, which adds to HHSC’s administrative burden. There are six managed care advisory committees, four committees dealing with children, five committees dealing with quality matters, etc. Needless to say, there is a lot of duplication with questionable effectiveness. As a disclaimer, I’ve served on two of the children’s committees.

The Sunset Commission recommends that the advisory committees be removed from statutes, allowing HHSC to establish by rule those that are necessary. It recommends combining the four children’s committees into one. It also recommends that HHSC create a master committee calendar, meetings be streamed, and that meeting materials be accessible online.

I’ve only covered five of the recommendations, the Sunset Commission made 15 for HHSC. As you can see from this, though, the recommendations are huge in scope and needed. From here, it gets mired in politics. I have a feeling this is going to be the issue for the Legislature this spring. It is worth reading these reports and contacting your legislators and letting them know if you support these recommendations or not.

The Department of Aging and Disability Services has published its Legislative Appropriations Request (LAR) for the 2016/2017 biennium. The full report can be found here: .

The LAR is the important first step in the state’s budgeting process. This represents the agency’s priorities and wish list. The Legislature will factor some of this in when determining the agency’s budget. This is important because these dollars, while large, represent services to people with intellectual and developmental disabilities. The table below shows what was budgeted for the 2014 and 2015 biennium compared to what the agency is asking for in the 2016/2017 biennium. Keep in mind that Texas budgets according to two year cycles, so 2014/2015 represents the combined budget of both years as does 2016/2017. The column at the end shows you the change. A positive number means that the agency is asking for more, a negative number indicates they are asking for less, and a zero means essentially no change.

The breakdown of the LAR can be found here: dadslar

As requested by DADS, there are major changes to the funding of community based alternatives, primary home care, and SSLC capital repairs/renovations. DADS is requesting increases in hospice, guardianship, community attendant services, CLASS, DBMD, regulation, administration, and IT program support.

In addition to the LAR, DADS is also requesting several exceptional items. Frequently the LAR requests by strategy represents no change to services. In other words, this is the cost for the status quo. The exceptional items represents new things the agency would like to do.

The first exception item is funding to maintain the current caseload for many of the waiver programs (HCS, CLASS, DBMD, MDCP, Texas Home Living Waiver, non-Medicaid services, and PACE). This exceptional item is asking for approximately 111 million dollars over the biennium. In their justification, DADs mentions that the current biennium (FY 2014 and 2015) had the funding to expand waiver slots, particularly in HCS, but a failure to continue funding those into the next biennium (i.e. a failure to grant this exception item) will result in people losing care.

The third exception item deals with funding to reduce waiver interest lists. If funded, this exception item would add 15,145 slots for community-based services and cost approximately 724 million dollars over the biennium. It would fully fund the STAR+PLUS community-based alternatives, the deaf-blind multiple disability lists, would serve about 20% of the people on the interest lists for HCS, MDCP, TxHmL, and CLASS. For In Home and Family Support and IDD Community services, it would serve about 10% of the people on those interest lists.

The fourth exceptional item deals with promoting independence for individuals with intellectual and developmental disabilities (IDD). This represents a little over 85 million dollars to either move people from facilities or keep people from having to go there. If funded, it would move 500 individuals from large or medium-sized intermediate care facilities, 216 children aging out of foster care, 400 crisis slots for individuals for individuals at imminent risk of entering a large/intermediate care facility, 120 individuals with IDD in the state hospitals, and 25 for children transitioning from a general residence facility.

The fifth exceptional items seeks to enhance community IDD services for individuals with complex medical and/or behavioral needs. This is an exceptional item that is meant to address things that the Sunset Commission noted. DADS is requesting approximately 57 million dollars over the biennium to the fund new crisis respite and behavioral intervention programs, and increase the ICF and HCS rates to encourage treatment.

The seventh exceptional item relates to protecting vulnerable Texans. This item requests approximately 41 million dollars over the biennium to hire new guardianship supervisors, expand the Lifespan Respite Care program, increase the HCS cap on dental expenses to $2000 per individual per year, to provide assistance to small HCS facilities for required fire sprinkler systems, and would increase regulatory tools.

The either exception item deals with the state supported living centers. This one asks for approximately 112 million over the biennium to finance repairs and renovations, to finance a replacement plan for vehicles, and to reclassify some positions.

In my last post ( ), I wrote about the Texas Sunset Advisory Commission’s recommendations for the Department of Aging and Disability Resources (DADS) with regards to the state supported living centers. While important, these are not the only recommendations that the Commission had for DADS. In this post, I’m going to cover some of the other recommendations (and you can see the full report here: ).

The issues covered in this blog are related to the idea of eventually closing down several of the state supported living centers. All of these are issues that should be thought about and addressed if the closure of those facilities is going to work.

People with greater needs need more support
If people are going to be transitioned from the SSLCs to the community, they may require more support. The report notes that two thirds of local authorities do not have crisis intervention teams for people with intellectual and developmental disabilities (IDD), and those that do will run out of funding in 2016 unless the 1115 demonstration waiver is renewed.

The report notes that it is challenging for individuals to move from the SSLC to the community due to a lack of providers that can meet their needs. One reason for this is that reimbursement levels are so low that it creates “a disincentive to care for the medically fragile population in the community” (Sunset report, page 32).

With the above in mind, the Commission made a number of recommendations (all of which they ultimately passed):
1. Require DADS to expand crisis intervention teams to provide increased supports to people with IDD in the community.
2. Require DADS and the Health and Human Services Commission (HHSC), in rule, to add a reimbursement level that incentivizes providers to open small and specialized group homes to people with high medical needs.
3. Allow SSLCs to leverage their experience and knowledge and provide services to community clients for a fee

People in day habilitation facilities should be able to expect adequate care
This issue deals with day habilitation facilities, which provide services during weekday work hours. The Commission notes that day habilitation facilities are not licensed by anyone, so the quality of the care and services varies greatly from good to very poor. In addition, DADS does not require any safety or quality measures in contracts with day habilitation facilities.

The Commission made the following recommendations (all of which they ultimately passed):
1. Require DADS to develop contract provisions regarding basic safety and service requirements for day habilitation facilities (things like run background checks, conduct fire drills, etc.).
2. Require DFPS to track data on abuse, neglect, and exploitation in day habilitation facilities.
3. Track and report violations at day habilitation facilities.

In addition, the Commission will require DADS to create an advisory committee on the redesign and potential licensure of all day habilitation facilities.

Long-term care providers should provide safe and quality services

According to the report, DADS oversees over 10,000 providers serving over 1.3 million Texans. The report notes that DADS issues few sanctions for violations. In fact the report found that in 2013, DADS took enforcement actions on 225 out of 38,000 confirmed violations. This is influenced by several things including providers having the right to “correct” their violations without penalty, a lack of teeth in penalties, and an appeal backlog.

The Commission recommended that (all of which they passed):
1. DADS develop progressive sanctions for serious or repeated violations
2. DADS repeal the “right to correct” provision
3. Make the penalties more expensive

DADS needs to do a better job managing contracts
DADS oversees about 4300 contracts worth about 2.3 billion dollars. The Commission’s report notes that DADS has a fragmented and inefficient approach to managing contracts. For example, DADS has 11 agency divisions that oversee contracts. This disorganization leads to delays and cost overruns that could have been prevented. The Commission basically directed DADS to restructure its contract management to centralize it, standardize it, and become more intentional about monitoring contracts (all of which were ultimately passed by the Commission).

All of the above issues relate back to the idea of ultimately closing the SSLCs. If the SSLCs are closed down, or if some are closed, then the people residing there (or the people who may reside there one day) need to go somewhere to have their needs met. These places need to be able to provide the services they need, in a safe environment. All of this is going to require some pretty serious changes on DADS’ part.

The Texas Sunset Advisory Commission is looking at the Health and Human Services agencies in Texas. In their report for the Department of Aging and Disability Services (DADS), the Commission made several recommendations that have the potential to have implications in the lives of those with intellectual and developmental disabilities (IDDs). The full report can be found here: .

One of their recommendations deals with the state supported living centers (SSLCs). With this blog I’ll discuss the background in the report, the committee’s recommendation, and its final decision and the politics associated with that.

According to the report, the SSLCs consume about 10% of DADS’ budget, account for 80% of its workforce, yet serve less than 1% of its clients. The operation of the SSLCs requires almost 14,000 employees, almost $563 million dollars, and this serves about 3650 individuals. The report notes several things:
• Texas, by operating 13 SSLCs, is out of step with the rest of the country. In 2011, Ohio and New York were both operating 10 institutions, this represented 36% and 43% of the institutions they had operated in 1960. Texas on the other hand is still operating 87% of the institutions it had in 1960.
• Texas, rather than incentivizing the shifting of resources and individuals to community settings, is incentivizing the closing of community settings.
• As of April 2014, the SSLCs were in compliance with 18-40% of the Department of Justice settlement requirements. Recall that in 2009, the DOJ entered into a settlement agreement with the State of Texas over abuse, neglect, and deaths in the SSLCs (see that agreement here: ).
• The number of confirmed abuse, neglect, and exploitation allegations at the SSLCs is equal to approximately 15% of the population of the SSLCs, this compares to 6-10% in group homes.
• As has been mentioned by others (see the Legislative Budget Board report here: the cost to operate the SSLCs is unsustainable. This is due to a combination of aging infrastructure, costs of compliance with the DOJ agreement, and injuries to employees (i.e. workers compensation claims).
• The average monthly cost to support a resident of the SSLC is almost three times the cost in a residential community home.

The report makes the following recommendations:
1. Close the Austin SSLC by August 31, 2017. The rationale is that this is the worst of the SSLCs in terms of abuse/neglect, employee injuries, difficulty meeting DOJ settlement, etc.
2. Establish the SSLC closure commission to determine an additional five centers to close.
3. Require those closures by August 31, 2022.
4. Direct DADS to improve the quality of life for residents in the remaining seven SSLCs.

Final Decisions:
1. Close the Austin SSLC: 105 people testified to close, 190 testified to keep open including Representative Myra Crownover, Represntative Lois Kolhorst, and Senator Robert Nichols.
2. Closure commission: 105 people testified for, 266 against including the above named legislators and Representative Susan King
3. Close five SSLCs: same results as in recommendation 2 above

As a result of the above, the committee’s decisions are:
1. Close the Austin SSLC, all proceeds go to services for people with IDD
2. Establish a SSLC restructuring commission to make recommendations to the Legislature by December 1, 2016
3. Require DADS to close any SSLCs recommended by restructuring commission by 2025
4. DADS must submit a plan to improve the quality of care in all SSLCs by December 2014

The Texas Department of Assistive and Rehabilitative Services (DARS) has released their Legislative Appropriations Request (LAR). The full document can be found here: . This document represents the agency’s budget request for fiscal years 2016 and 2017 (taken together these are a biennium). This is the first step in the budget process, where the agency identifies what it needs and what special requests that it has. This will be matched in the beginning of the Legislative session in the spring of 2015 with a document by the Legislative Budget Board, which will be their view of what the agency needs. The agency will then spend the spring testifying before the Texas Legislature to secure its appropriations.

This is an extremely important document because there may very well be more significant changes on the horizon for the Early Childhood Intervention (ECI) program. Reading through the document, DARS tells us that in fiscal year (FY) 2013, ECI served approximately 25,000 children per month. In their LAR, they are projecting to serve a little over 22,800 by FY2017. This represents an almost 9 percent decrease. During this time, the average monthly number of hours of service per child per month is projected to increase from 2.61 hours/month to 2.93.

In their LAR, DARS is projecting that ECI will essentially maintain its budget in FY 2016, but will see a reduction of more than 15% during FY2017. In other words, in their baseline budget request DARS is telling us that they are projecting a decrease in funding and are projecting that they will need to serve fewer Texans between the ages of birth and three years old.

As a result of this, DARS is making two special requests for funding in their LAR on behalf of the ECI program. The first is a request of over $25,000,000 over the biennium just to maintain the projected FY2015 case levels. From page 189 of the LAR: “Federal IDEA Part C funding available to fund the ECI system in Texas has remained flat in recent history. However, ECI program costs associated with federal
requirements and not reimbursed by Medicaid has resulted in the agency using more federal IDEA Part C funding for allowable program expenses than projected. As DARS uses more IDEA Part C funding in fiscal years 2014-2016 to support ECI program costs, the result is less IDEA Part C funding available to maintain base funding levels and serve eligible children in fiscal year 2017. Funding for this exceptional item is to maintain the number of children served in fiscal year 2016 in fiscal year 2017 in the ECI

What does this mean? It means that Texas has consistently underfunded the ECI program, relying on a finite amount of Federal funding instead. That funding is running out, creating a shortfall. If that shortfall is not covered, Texas will have to provide ECI services to fewer children.

The second special request is an additional $25,000,000 over the biennium to increase monthly caseload to over 30,000 by FY2017. DARS is projecting that even with their more stringent eligibility criteria the number of young Texans who qualify for ECI is going to increase pretty dramatically by FY17.

My take on the bottom line, DARS needs an almost fifty million additional dollars over the biennium to continue to offer services to young Texans who qualify under the current eligibility criteria. If they can’t get that through the Legislature, there will be another difficult round of system changes that involve a combination of more stringent eligibility criteria (so fewer children are being served) combined with more family cost share.

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:

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.

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 ( 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: . 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.

Yesterday I attended the Early Childhood Intervention (ECI) Advisory Committee meeting in Austin. These meetings are always informative and important because ECI has experienced huge, fundamental changes over the last four years and it is not done. Over the last four years, ECI has narrowed its eligibility which has changed the population of children receiving ECI services, it has required ECI providers to directly bill Medicaid and insurance companies to get reimbursed for services which has required them to develop new skill sets, and it has begun requiring families to pick up some of the costs of the ECI services which has some far-reaching effects.

I’m going to use this post to talk about several things:
• Senate Bill 1060
• Annual performance report data
• Senate Bill 7

Senate Bill 1060
Senate bill 1060 requires the Department of Assistive and Rehabilitative Services (DARS) to study the cost effectiveness of the family cost share system in ECI. Now, the bill is a little more than a study. The bill directs DARS to study the cost-effectiveness of the system and also to evaluate the changes necessary to improve the cost-effectiveness of the family cost share part of ECI. DARS will also implement those changes if they improve the cost-effectiveness and if they don’t hurt access to the services. This will all be done by December 1, 2014. So part of the meeting yesterday dealt with the fact that this study is going to begin soon.

The family cost share idea sounds really good on the surface. Those families that are able to pay for the services should. However, when families are asked to do either pay out-of-pocket or to use their insurance to cover ECI services, it introduces something unexpected – competition. Those families with the means may begin going to private providers for speech therapy, occupational therapy, and physical therapy as opposed to an ECI provider. This has a number of interesting potential impacts. First, private providers aren’t providing services in the child’s natural environment which is a huge advantage that traditional ECI has. Second, private providers are “fixing” the delay as opposed to coaching the family to help the family be successful, which is another huge advantage that traditional ECI has. Finally, if this happens on a large enough scale it is unclear if traditional providers can adjust to this change.

Annual Performance Report (APR) data
DARS is required to submit an APR to the federal government each year as a condition to renew the federal funding for ECI. There are a lot of measures in this report and I’m usually the one that does the most arguing over the statistics and their meaning. Anticipating this, DARS reported on the data at a meeting that was earlier than usual. While there are a lot of measures, the focus is usually around the impact of ECI on children and the impact on families.

The data looking at the impact of ECI on children shows that more children than ever make improvements as a result of the ECI program, but we’re losing ground in terms of how many of these children are reaching an age-appropriate level as a result of the ECI intervention. The DARS staff felt there were two major reasons for this. First, the quality of the data is improving. In other words, this might be a more accurate reflection. I’ve actually heard that the data is improving for several years now. At some point we have to quit using this one.

Second, because eligibility was narrowed this changes the children in the program so that they have more complex needs. I asked the staff when the eligibility was narrowed, because this actually happened two and a half years ago – in other words, last year to this year might be looking at apples to apples. The staff felt that there was a transition period during which you had children under the old eligibility requirements comingled with the new requirements, so you are looking at different populations. The chair of the committee had a great suggestion about running the historical data incorporating the current eligibility requirements to see where we are compared to where we were.

The family outcome data is based upon a survey and shows overwhelmingly that ECI is a valuable service for families. The challenge with this is always that there are approximately 25,000 children in ECI and the data is based upon something like 600 surveys, which is about 2.5% of the population. I don’t have any issues (and am glad) that the surveys are extremely positive about the impact of ECI on families, I just always wonder how representative the sample is of the entire population. The DARS staff assured me that this was a representative sample size.

Senate Bill 7
Senate bill 7 passed in the last legislative session and is slowly moving individuals with intellectual and developmental disabilities away from the Medicaid waivers and to managed care. This impacts ECI because SB7 establishes Star Kids, which is the form of managed care for children. At the meeting yesterday we had a presentation from the Health and Human Services Commission (HHSC) staffer that is coordinating this. And she got an earful. Essentially HHSC will develop the broad guidelines, services, etc. and will then request that managed care organizations submit proposals on piloting this program. During what was meant as a high-level presentation on Star Kids, parents and one school district staffer submitted feedback about SB7 and Star Kids:
• Managed care organizations are used to treating medical problems. For example, if you break your leg it is generally treated in a certain way and generally takes a certain amount of time to heal. If it’s bad enough, based upon an assessment, you may require some physical therapy to become stronger/regain your balance/etc. All this is measurable. People with IDD don’t necessarily have medical conditions. They are complex, have changing needs, and this model won’t work with them – they aren’t being treated.
• Managed care organizations that ultimately end up providing these services are clearly not doing this out of the goodness of their heart, they are seeking to make money. There’s nothing wrong with this, unless it’s your loved one who isn’t receiving services in the interest of the company’s profit.
• Any managed care organization(s) selected should have experience working with people with IDD.
• It needs to be recognized that if there are a handful of managed care organizations providing services in Texas ultimately, each will be offering slightly different services and have slightly different ways of doing things which parents and caregivers aren’t going to understand.
• Finally, there was a discussion about why didn’t SB7 and Star Kids think about the services the children are receiving in the school system? This actually has some implications. Some kids in this population may be receiving speech therapy, physical therapy, occupational therapy, have an assistant, communication/mobility aides, transition, even specialized nutrition through the school system. How does this link up with the services that Star Kids provides? What about case management? What about transition?