Skip navigation

Tag Archives: IDD

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: http://cfoweb.dads.state.tx.us/lar/default.asp .

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 (https://jcissik.wordpress.com/2014/09/11/texas-state-supported-living-centers-mixed-signals/ ), 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: https://www.sunset.texas.gov/public/uploads/files/reports/DADS%20Commission%20Decisions_0.pdf ).

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: https://www.sunset.texas.gov/public/uploads/files/reports/DADS%20Commission%20Decisions_0.pdf .

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.

Background:
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: http://www.justice.gov/crt/about/spl/documents/TexasStateSchools_settle_06-26-09.pdf ).
• 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: http://www.lbb.state.tx.us/Documents/Publications/Policy_Report/Transform%20State%20Residential%20Services%20for%20Persons%20with%20Intellectual%20and%20Developmental%20Disabilities.) 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.

Recommendations:
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

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.

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!

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!

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.”