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

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

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

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

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

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

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

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

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

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

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

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

The breakdown of the LAR can be found here: dadslar

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Long-term care providers should provide safe and quality services

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In an earlier post I discussed how Kansas is rolling out managed care (called KanCare) for individuals with Intellectual and Developmental Disabilities (IDD). For that post, see here: . This is extremely relevant for Texans because, thanks to Senate Bill 7 that was passed in the 2013 Texas Legislature, we’re beginning this process.

For the state of Kansas, this was going to go into effect on January 1. The state of Kansas has been forced to delay this implementation. The Federal Centers for Medicare and Medicaid Services (CMS) sent the state of Kansas a letter essentially forcing them to delay this process. In their letter, CMS expresses several concerns:
• They would like to know how managed care is going to identify an individual’s current needs and how managed care will address those needs (i.e. what are the procedures?).
• They would like to know how managed care will address the following:
o Ensuring that each individual receives annual assessments and that each individual receives the services identified by the assessment.
o Ensuring that assessments are timely and that changes in an individual’s condition that prompt changes in services are completed in a timely manner
o Describe the tool that will evaluate need and demonstrate that it is adequate to do so
o Describe the process for developing new assessment tools include stakeholder engagement and training
o Describe how individuals are provided due process when requested services are denied
• They want Kansas to assure them that the providers exist to meet identified needs
• Kansas must implement a corrective action plan, and report on it weekly, regarding the existing underserved wait list

The full letter can be found here:

If this isn’t interesting enough, the National Council on Disability sent a letter to CMS requesting that KanCare be delayed. NCD’s concerns are the following:
• Kansas didn’t provide much opportunity or consideration of stakeholder concerns
• Kansas and managed care organizations need to include stakeholders in the design of the system
• NCD is concerned that KanCare will have a negative impact on the quality and outcomes of services
• Kansas needs to address the people on their waiting lists
• NCD is concerned about the delays in payments from the managed care organizations to providers

NCD further makes recommendations that essentially provide checks, balances, and oversights to the KanCare system.

The full letter can be found:

This is important because many of these same challenges exist in Texas. In Texas budgetary cuts, a failure to adequately fund a system that is expanding as the population expands, political pressure not to increase state revenues via taxes, politicians that want to “help” but don’t understand any of this, and policy makers that don’t understand how decisions impact real people have created a potentially very scary situation with Senate Bill 7 .

With the passage of Senate Bill 7 in the last legislative session, support and services for individuals with intellectual and developmental disabilities is moving over to managed care. Norine Gill forwarded an excellent article to me from Disability Scoop on how Kansas is experiencing this (the full article is here: ) and it is worth reading.

The article makes the same points that many of us have been concerned about with regards to SB7:
1. Managed care organizations don’t have experience with the IDD population.
2. The IDD population has specialized and complex needs
3. If a managed care organization makes a mistake with the IDD population, the results can be devastating.

The article also does a good job of showing the perspective from the managed care organization, something a number of us heard during the process leading up to SB7’s passage. Namely, that they say they won’t be cutting services. I always question how that’s possible if one is interested in being profitable – the motivation is different than services. In Kansas they also claim that while they don’t have experience with this population they are hiring experts who do have that experience.

The article talks about medical providers’ experience; namely, increased costs, increased bureaucracy, improper denial of services and reimbursements, etc. The result is that smaller providers and organizations cannot develop the infrastructure to handle this, which results in fewer choices for people with IDD and choices that might be really far away – especially considering the size of Texas.

With SB7 in effect and the various work groups and committees meeting on how to implement it, it’s important to read articles like this and to learn from other people’s experiences. It’s also important to participate, bother your legislatures, and let the policy makers know how you feel.

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:
STAR Kids Advisory Committee:
State Managed Care Advisory Committee:

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
House: Human Services

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:

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:

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.

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: ). 

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: .