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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 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: http://www.hhsc.state.tx.us/reports/2013/EQRO-STAR-PLUS-Waiver.pdf

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.

The Texas Comptroller has certified that the funds are available for the appropriations bills that came out of the 2013 Legislature. There is mixed news for people with intellectual and developmental disabilities and their families.
With regards to the Department of Assistive and Rehabilitative Services (DARS) and Early Childhood Intervention, there is good news and bad news for Early Childhood Intervention (ECI):
 ECI is seeing an almost 18% increase in its funding, from ~$270 million for the current biennium to ~$318 million for the upcoming one. Both respite and the administrative oversight of ECI are being funded at the same amounts as in the current biennium. In addition, the Legislature wants to see the number of hours of services per child per month to increase from an average of 2 hours to an average of 2.9 hours.
 The bad news is that the ECI appropriation has a rider. The rider says that anyone receiving ECI services who has a family income greater than 400% of the federal poverty level must pay 100% of the cost of the services.
It’s great that ECI funding is expanding and that the Legislature wants to see more hours of services per month per child. It will be interesting to hear DARS’ forecasts on how this will impact the number of children served. The rider is concerning and has significant long-term implications for both providers and the people that will be receiving ECI services. This will mean that some families will opt not to receive the services because they cannot afford it and others may be driven to private providers, which means that current ECI providers will have to learn how to be competitive with private providers.
With regards to the Department of Aging and Disability Services (DADS) and their long term services and supports appropriation, there is mixed news that reflects the shift to managed care that is being driven by Senate Bill 7. First, some programs are seeing a reduction in funding:
 Primary home care (~42% 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 (~22% 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.
 Hospice (~5% reduction)
There are a number of programs seeing an increase in funding, including several waiver programs that are seeing a large increase in funding:
 Community Attendant Services (11% increase): Seems to be balancing out the reduction in primary home care.
 Home Community-Based Services (HCS) (15% increase)
 CLASS (10% increase)
 Deaf Blind Multiple Disabilities (38% increase)
 Medically Dependent Children (6% increase)
 Texas Home Living Waiver (63% increase)
 Nursing Facility Payments (4% increase)
 Medicare Skilled Nursing Facility (6.5% increase)
 Balancing Incentive Program: 14.7 million
 State Supported Living Centers (~2% increase)
It should be noted that none of the bills that sought to establish realignment committees for the State Supported Living Centers (SSLC), closure of the SSLCs, or bills of rights for people with intellectual and developmental disabilities passed. There are no riders directing DADS to close SSLCs, or explore closing SSLCs, only a rider to develop a ten year plan for the SSLCs.
The expansion of the waiver programs is great news. But the reality is that managed care is coming as a result of Senate Bill 7, so we’re going to be in uncharted territory soon. The fact that the Legislature will not move on the SSLCs is interesting.

Senate Bill 7, which shifts the Medicaid waiver services for individuals with intellectual and developmental disabilities over to managed care organizations, has passed the Senate is has passed the House as of May 21. However, while in the House one of the representatives amended the bill in a major way. Representative Turner amended the bill by eliminating the redesign advisory committee, which would have been the mechanism for stakeholder input into what they new system will look like. Below is a copy of the letter that I sent to my representative about this as well as Representative Raymond, who oversees the House Human Services committee. Feel free to cut and paste and share with your elected leaders.

“I hope that this finds you both well.

As you are both aware, the House has been voting on SB7. Yesterday Representative Turner amended the bill by striking the IDD redesign advisory committee. This is a huge concern and without that committee I as a parent am unable to support this bill.

As you both know from my previous communications and visits with you, I feel that stakeholder input is absolutely critical to the long-term success of this bill for the state and for the people that will be receiving services. Without that stakeholder input, the state does now know what this population needs or how it experiences services. Without this input, the state does not know if managed care organizations are providing the services and the environment that this population needs. The redesign advisory committee provided an accountable mechanism to providing and receiving stakeholder input. Sweeping this into another committee that is not designed for this purpose is criminal.

Many parents like myself and many advocacy groups supported SB7 only because of the presence of that advisory committee. If that has been eliminated, then I can no longer support that bill and I strongly urge that Representatives Sanford and Raymond both withdraw their support of the bill.

Thank you for your time.”

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:
http://www.capitol.state.tx.us/Committees/MembershipCmte.aspx?LegSess=83R&CmteCode=C610

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

http://www.capitol.state.tx.us/Committees/MembershipCmte.aspx?LegSess=83R&CmteCode=C310