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Tag Archives: waivers

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: http://wp.me/pZf7K-9t and here’s one for the Department of Aging and Disability Services: http://wp.me/pZf7K-9p /

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: https://www.sunset.texas.gov/public/uploads/files/reports/HHSC%20and%20System%20Staff%20Report.pdf . 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

Consolidation:
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.

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!

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 1361 is being heard by the Senate Health and Human Services Committee on Tuesday, April 23rd.  This is a bill that seeks to establish a bill of rights for persons receiving long-term services and supports under Medicaid programs.  As we seem to be moving inexorably towards managed care, this is a short, four-page bill that establishes some important principles especially for individuals with intellectual and developmental disabilities (see the text here: http://www.legis.state.tx.us/tlodocs/83R/billtext/pdf/SB01361I.pdf#navpanes=0 ). 

If passed, this legislation puts the following principles into state law:

  • Individuals have the right to live as independently as possible
  • Individuals have the right to control their own lives
  • Individuals have the right to receive services and supports to secure and retain employment
  • Individuals have the right to be able to self-advocate or receive that help from family or guardians
  • Individuals have the right to be involved in system redesign
  • Individuals have the right to receive services and supports that address individualized needs, that close the gaps that exist in current services and supports, that are part of a quality management process, that are overseen by qualified staff with decision making powers, and that are accessible and transparent.
  • Individuals have the right to select their own qualified provider
  • Individuals have the right to have access to both institutional and home/community-based services and supports
  • Individuals have the right to retain existing health care coordinators and physicians
  • Individuals have the right to periodically change health care providers, coordinators, and managed care programs
  • Individuals have the right to be fully informed about their rights and obligations
  • Individuals have the right to have access to grievance procedures

 I realize this is a philosophical document.  However, if passed it provides the foundation behind any system changes to long-term services and supports.  Many people are concerned about their loved ones being swallowed up by soulless managed care programs that are more concerned about efficiency and bottom line than in the people they care for, legislation like this would help to reassure guardians and family members that the state has some compassion and interest in taking care of this vulnerable population.

To contact members of the Senate Health and Human Services committee, click here for a list of members: http://www.legis.state.tx.us/Committees/MembershipCmte.aspx?LegSess=83R&CmteCode=C610 .

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

Today I spent the day in Austin, largely at the state capitol.  This was an interesting day as there were a number of things happening:

  • Task Force for Children with Special Needs meeting
  • Senate Bill 7 hearing
  • Visits with legislators

Task Force for Children with Special Needs:

The Task Force is established by legislative statute and is a state-agency driven entity.  It’s purpose is to develop a strategic plan to meet the needs of children with special needs and is meant to integrate all the Health and Human Services agencies as well as agencies like the Texas Education Agency.  I was appointed by the executive commissioner of the Health and Human Services Commission as a parent member.  As a parent, I don’t get to vote but I do get to offer plenty of input, sometimes more frankly than the agency staffers are used to.

This was a short meeting because of the Senate Bill 7 hearing.  Basically it was to brief us on the Task Force’s two big initiatives.  The first is a comprehensive website, geared towards families, of the services available to children with special needs.  It’s meant to be a parent-friendly umbrella website that is easy to navigate.  More than that, it will have videos, information on developmental milestones as well as programs/services available by age (i.e. help prompt parents for the things they don’t know to think about), location of programs/services, etc.  It is also meant to have a regional component to help direct the parent to resources in their area.  The Task Force implemented a state wide research effort using focus groups, phone calls, and surveys and now the design of the website is in progress (funding for everything has been secured or is in progress with the current Legislature).

The second initiative is a crisis prevention/intervention service that would incorporate multiple agencies.  This is in the beginning stages of planning but it’s very needed and a great idea.

Senate Bill 7 Hearing:

DADS conducted a hearing on Senate Bill 7 this morning that ran at the same time as the Task Force meeting.  I decided ultimately not to attend this as I felt I’d be more impactful visiting legislators at the capitol (more on this later).  I’ve written everybody about my thoughts about this bill and I think the decisions have already been made on this one…

Visits with Legislators:

I spent about four hours visiting legislators, staffers, and committees.  I visited with mine, Sen. Paxton (staff) and Rep. Sanford (both the representative and his staff).  In addition I visited with Rep. Carter (staff) from Dallas, Rep. Raymond (staff), Sen. Nelson (staff), and both the Senate Health and Human Services committee staff as well as the House Human Services staff.

Let me begin by stating that I didn’t make any appointments with anyone ahead of time.  While this is courteous, I did not want anyone to have a chance to prepare.  I also, intentionally, came dressed as a parent of a child with special needs as opposed to a lobbyist.  So I showed up in khakis with a tie, but no expensive suits.  In each office, I walked in and announced that I am the parent of a child with Down Syndrome and I’d like to talk to someone about legislation and appropriations.

To start with my legislators, I spent a great deal more time with them and their staff than anyone else.  I focused my discussions with them around the following:

  • Senate Bill 7
  • State Supported Living Centers
  • Balancing Incentive funds

I think SB7 is going to pass.  So I had several talking points on this bill.  It has great intentions – more services to more people at reduced cost to the state.    Having said that, the devil is in the details and the people pushing the bill don’t understand the details, which is critical in this circumstance.  First, there needs to be significant stakeholder support at all stages.  That means as invited testimony (after all, the parents and family members – not the state agencies, are the experts on this topic), voting members of system redesign committees, and at each stage of legislation and rulemaking.  Second, there needs to be an understanding that this is an incredibly complicated population and service delivery driven by assessments is going to miss a lot.  I made the point that this population requires medical care, dental care, many types of therapies, 24/7 care, employment care, housing, etc.  To illustrate the complexity, I used an example from the state supported living centers.  Back when the Department of Justice issued its findings about the old state schools, it used two specific examples as examples of a lack of oversight by the schools.  In one example, a state school resident had been eating latex gloves.  In another, a different resident was eating the stuffing from a chair.  I used these examples and explained that they are examples of how profoundly some individuals with intellectual and developmental disabilities are affected and how difficult it’s going to be to assess this and come up with services to prevent it.  I made these SB7 point with everyone and every committee that I visited with, with two exceptions that I’ll talk about in a minute.  In each case, the people I talked to had no idea it was like this.

Regarding the state supported living centers, I focused on two things.  First, if we are going to have them we should do it right – which means strong funding and appropriate staffing for fewer of them.  Second, Sen. Rodriguez has filled two bills (one is SB 729) on evaluating the SSLC’s and establishing a realignment commission for them.  I wanted my legislators to know that I support both bills.

The Federal Government is making available ‘Balancing Incentive” (BIP) funds for Medicaid programs.  My understanding is that this is intended to be seed money to kick start efficiencies and better service delivery.  So, for example, the website I spoke about earlier is going to be funded by BIP funding.  The problem is that both the House and Senate appropriations committees are sweeping more programs into this funding (because the state doesn’t have to pay for it).  This is a problem because the funds will go away, so any on-going program will lose funding once that happens.  This happened two sessions ago with Federal stimulus funding and ECI – ECI was ramped up and expanded with that funding, but after it went away it had to be cut back because the state would not make up the difference.  This is a concern with BIP funding.

I visited with Rep. Carter’s staff.  She is on the House’s appropriation’s committee for Article II (health and human services).  I had written each of them about the need to fully fund ECI, which they did.  She wrote me back, so I visited to say thank you.  I also put in my $0.02 about the BIP funding that I mentioned above with her staff.

Rep. Raymond is the chair of the House Human Services committee.  His office will either craft its own version of SB7 or receive the Senate version once the Senate passes it.  I spoke with his staff about the points I described above.  After meeting with me, they asked me to go talk to the Human Services committee staff about this, which I did.  This (the committee meeting) was one of the longer meetings that I was in today.

As the author of SB 7, I dropped by Sen. Nelson’s office.  Her office made it clear that they are not the ones listening to feedback about this bill and that I should go speak with the Senate Health and Human Services committee staff (which is located in another building).  I did this, and they let me know that the only person qualified to listen to feedback isn’t available – but I’m welcome to email (which I will).  I think it’s evident that the good senator is no longer desiring to hear feedback about what she set in motion from normal people.

I appreciate the time that everyone (with one exception) gave me.  I think I was able to make the points about the need for significant stakeholder involvement combined with an appreciation for how complex these matters are, while everyone has great intentions there’s a real lack of understanding about the things they are trying to change.  I’m also very happy because I have lots of contacts, who will be receiving my thoughts on these matters as the session progresses!

In an earlier posting, I wrote about state Senator Nelson’s Senate Bill 7 (see https://jcissik.wordpress.com/2013/02/07/senate-bill-7-long-term-redesign-an-open-letter/ ) which redesigns long term services and supports for individuals with intellectual and developmental disabilities and seeks to shift all these services over to managed care.  The intent is to improve access to services, eliminate the interest lists, and improve the quality of care.  All this will done in a manner that saves the state of Texas money.

A lot of people are very concerned about this bill.  Many of the advocacy organizations are torn with how to proceed.  Some feel the bill should be opposed; we need a smarter, more person-centered system and not a radical shift to managed care.  Other organizations feel this is inevitable, so the bill should be supported but they should work behind the scenes to get the best “worst” bill that we can.

The bill was heard in committee on the 26th of February.  Senator Nelson discussed the fact that she has received a lot of feedback, very little of it positive.  Her remarks throughout the hearing give me the impression that no matter what the feedback is, she feels this bill is a good idea and it’s going to pass no matter what.

The hearings began with statements by Senator Nelson.  She had prepared a committee substitute to the bill (I’ll talk about this later).  She had a panel of experts testify on the bill, none were parents or spouses of people with intellectual and developmental disabilities and none had IDD themselves.  She then took a break from other testimony on the bill to give people a chance to review the committee substitute and ask the state agencies questions.  After a several hour break, public testimony began.

Some people are supportive of the bill.  This ranges from family members to people that will make money off the bill.  Many people were concerned about the bill.  Their concerns hinged on a few things that the committee heard over and over again:

  • The State Supported Living Centers (SSLC’s) are not included in the bill.  This is a big deal because it is many times more expensive to keep someone in the SSLC’s than to take care of them in the community and the SSLC’s do not provide many times the quality of service.  In other words, huge resources are being taken out of the system to serve a few in the SSLCs and to be unwilling to even discuss this reflects a lack of seriousness for reforming the system.
  • There are real concerns with managed care.  The state uses STAR+PLUS to provide managed care to Medicaid recipients.  Senator Nelson and the members of the committee didn’t actually consult with any STAR+PLUS recipients to see how well this works.  The feedback was not good on this program; lack of access to doctors, lack of consistent case management, long waits for services, that sort of thing.
  • The use of a medical model.  Basically the concern is that IDD is not a disease or medical condition to be treated.  Individuals with IDD need help and support over the course of their lives and the medical model, and managed care, aren’t appropriate ways to provide this.
  • Experience with other states.  This is the interesting point, if I was going to transform long term services and supports I’d find out what other states do and get feedback on how well this works.  Turns out the feedback on using managed care with the IDD population from other states isn’t very positive.
  • Finally, there’s a real concern over stakeholder input.  The people receiving and relying on the services should help to design the system.  This is because while Legislators and agency employees have good intentions, they don’t understand how it works or doesn’t work.

The committee substitute changes some of the language, slows the process down greatly, implements an advisory committee to assist with redesign (this is the key stakeholder input piece), and includes housing, employment, and person centered planning.  All of which are positives.

What can you do?  First, read the bill (the link is here:  http://www.capitol.state.tx.us/BillLookup/history.aspx?LegSess=83R&Bill=SB7 ).  Second, write or call every member of the Senate Health and Human Services committee with your feedback and thoughts (the link to the list of members is here: http://www.capitol.state.tx.us/Committees/MembershipCmte.aspx?LegSess=83R&CmteCode=C610 ).  Third, contact your representative and senator and give them the same feedback.  Finally, share this information with other parents, brothers, and sisters and have them do the same.

I really get the feeling that they are going to ignore feedback and pass this no matter what…

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

 

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

 

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

  • Primary home care (~50% reduction): Provides non-skilled personal care services.  Reduction is due to STAR+PLUS and this service will eventually be eliminated.
  • Day Activity and Health Services (~67% reduction): Another casualty to STAR+PLUS.
  • Community-Based Alternatives (~24% reduction): due to STAR+PLUS.
  • ID Community Services (~7% reduction): Administrative expenses are being transferred elsewhere and some of the individuals receiving services are being transferred to the Texas Home Living Waiver.
  • Promoting Independence Services (~5% reduction): Another casualty due to STAR+PLUS.
  • State Supported Living Centers (~3% reduction)

 

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

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

 

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

 

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