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DisAbility Rights Idaho, Comments on proposal for the Partnerships for Innovation, Inclusion and Independence (PIII)

The PIII proposal is one of those concepts that seems like a good idea to people in Washington D.C. examining the various laws and grants, but is obviously a very bad idea to people with disabilities in the states where the councils actually do their work. I do not believe that there is any way to combine the three councils without diminishing their effectiveness. I do not believe that a single council can have effective representation from all of the affected constituencies.

Combining the Councils will destroy their focus and dilute disability representation.

All three councils are concerned with some type of disability, all three councils are required to have some representation of people with disabilities or family members. All three councils have some role in recommending state policies concerning issues involving people with disabilities. Nothing else is the same. Even in these three areas, each council’s mission and makeup are very different. In theory, the councils’ activities could overlap. In practice they never duplicate but sometimes collaborate. In Idaho the DD Council has interacted with the State Independent Living Council (SILC) for thirty five years, complimenting each other’s activities without duplicating or overlapping.

1. The State Independent Living Council (SILC) and Centers for Independent Living (CIL) are cross disability organizations, but they are exclusively focused on independent living in the community. The SILC’s activities are focused on adults and transition age youth, soon to enter adulthood. They are NOT directly concerned with conditions in facilities, early childhood services, family support, K-12 education (except for transition), abuse or neglect in facilities, diagnosis or treatment. By concentrating on independent living, the SILC can work on a wide variety of disabilities, although it is a challenge to maintain a board which fairly represents this variety.
2. The DD Council is focused on people whose disability is severe and occurs at birth or during the developmental period, but mostly addresses people with Intellectual Disability, Autism Spectrum Disorders, and Cerebral Palsy. By keeping a narrower focus in terms of disability, DD Councils can address issues across the lifespan including prevention, infant and toddler, preschool, Education, medical treatment, abuse and neglect in homes and facilities, specialized skill development, job training and placement, benefits policies, rights protections, and community integration. By having a narrower disability focus, DD Councils can assure that they have representation for the variety of disabilities, different ages and issues, and can include parents of children with DD.
3. Congress established the Traumatic Brain Injury (TBI) Programs for the specific reason that the unique problems of people with TBI were not being addressed by the various disability related programs and the medical and rehabilitation establishment. People with TBI found themselves without appropriate treatment, rehabilitation services, education or medical treatment. As the incidence of TBI increased due to combat injuries, and sports injuries, this lack of specialized services was exacerbated. Recombining the TBI program into pre-existing programs would defeat the purpose of the legislation.

There is no way that these councils can be efficiently combined into a single entity. To insure adequate representation of all of the different disability types, ages, and geographic and cultural groups would require a huge and unwieldy council. Maintaining a focus on all of the issues addressed by each of the councils would dilute the targeted efforts and make them less efficient and less effective.

PIII would dismantle a successful program of State and Local innovation, often leveraging private resources to create local solutions.

These Councils have been productive laboratories for state innovation. Congress designed these programs to be focused on specific priorities, but to leave the implementation to the states to find innovative and local solutions. Within each council’s mission they are required to have consumer controlled processes for developing plans and projects. These projects in Idaho have often focused on developing and connecting people with disabilities to local, private or charitable resources to help people integrate more fully into community life, rather than promoting dependence on federal programs. For over 30 years these unique programs have been successful laboratories of innovation, responsive to their constituent communities. In those three plus decades, they have developed cooperative arrangements, collaborating when appropriate, but never duplicating services. In Idaho at least, this process is effective and efficient.

Each Council is an essential part of a State Network.

SILCs have a unique relationship with the state’s Centers for Independent Living (CIL). CILS receive guidance, public policy assistance, coordination and planning assistance from the SILC. CILs are the main focus of the SILC and this very beneficial collaboration could not be sustained at the same level with a broader, less focused, combined council. The SILC also provides a statewide point of contact for broader collaboration with Protection and Advocacy services, and the other two councils.

DD Councils are intimately associated with The University Centers for Excellence in DD (UCEDD), and with the Protection and Advocacy System (P&A). DisAbility Rights Idaho is the P&A system for Idaho. The UCEDD, through research training and dissemination helps to define evidence based “best practices” for people with DD. DD Councils provide planning coordination and public policy guidance to help the state adopt and implement those practices. P&As, in addition to protecting the rights of people with developmental disabilities, monitor the success of those practices and policies and provide important feedback and legal analysis to the Council and the UCEDD (See also NDRN”s comments on this issue, with which we concur). These three entities are required to collaborate on five or more priority issues every year.

TBIACs are integrated with the state TBI program and the Protection and Advocacy for people with TBI (PATBI). This combination of programs provides for collaborative planning and priority selection to help drive state level solutions to the lack of specialized services and treatment for people with TBI.

A combined council could not hope to achieve the level of joint planning and collaboration on the three areas of focus. This would make the process of planning and priority setting cumbersome at best and impractical in general. The focus which Congress placed on particular populations, like TBI, and on particular goals, like independent living, would surely be lost.

Reduced Funding will Reduce Effectiveness.

Since the merger of the councils will not increase efficiency, reduced resources will simply reduce effectiveness. The drastic reduction in overall funding will create destructive competition for shrinking and inadequate resources by diverse and deserving groups of people with disabilities. Making a single council choose between addressing abuse of people with DD in institutions, and finding transportation resources to enable people with disabilities to gain employment, or making web based services accessible for blind people, or improving access to mental health services for people with persistent mental illness, is not productive. These programs are in need of more funding, not less. (See also the comments of NDRN).

Conclusion

The PIII proposal has superficial appeal to people in Washington D.C. reviewing statutes and bureaucracies, but it discounts the collective experience of people with disabilities in the states where these programs have succeeded, and over thirty years, have found effective ways to achieve the Congressional purpose of each program, individually and collaboratively. PIII would destroy the focus of each program and dilute their mission across many dissimilar disabilities and goals. It would make adequate representation of different disabilities, geographic areas, and cultural concerns in a single council impossible. It would disrupt the three networks which improve the effectiveness of the councils. Reduced funding will reduce effectiveness.

Comments of DisAbility Rights Idaho on 

Medicaid Supported Living Rates for People with Developmental Disabilities.

Rate setting assumptions and base wage rate.

The rates appear to be based on an assumption that the appropriate average wage for all of the levels of support should be $10.47/hr. This is based on the mean wage for personal care aide in the Bureau of Labor Statistics (BLS), Occupation Code 39-9021, Personal Care Aide. We think this assumption is flawed and that it will lead to undesirable consequences. Although direct support staff for all levels of support may share the same job title, the level of difficulty, and the level of responsibility, and the level of skill will generally be very different for example in hourly supported living versus intense support. The tasks involved and the qualifications for direct care staff are markedly different from those of a personal care aide. People who are approved for Intense Supports must have either a serious medical condition or a history of dangerous behavior (IDAPA 16.3.10.514.02 (b)). The skill level, training needs, and responsibility level for Intense Level direct care staff are markedly higher than for most participants receiving hourly supports. These disparities will likely impede delivery of high quality services, create perverse financial incentives, and may result problems with access to service for some individuals.

1. Supported Living Direct Care staff have responsibilities beyond those of a personal care aide. While Residential Habilitation- Supported Living (hereafter, SL) includes personal care services, it also includes skill training, and some high levels of supervision and medically related care and monitoring which are not provided by personal care aides (PCA). Teaching independent living skills to people with developmental disabilities requires training and skill beyond those expected of personal care aides. Although there may not be an appropriate BLS category for Supported Living direct care staff, it is clear that the job title selected by Meyers and Stauffer, does not match the skill set for this position. If PCA is used as a basis for salary some premium should be added to account for the higher skill and responsibility level expected in SL.

Recommendation: Set a higher base wage for Supported living direct care staff

2. Intense Supports will likely involve much higher levels of skill and responsibility than most Hourly Supports. Once an appropriate salary level is determined for basic SL direct care, a higher base rate should be used in Intense Supports. A reading of the standard used for approving intense support level will quickly reveal that the skill and responsibility of providing care and supervision for this population is on a much higher level than standard hourly supports. We do not consider the cost of drugs. Idaho is unusual (possibly unique) in having developed a system for SL which serves the most complex participants in the DD System. Idaho has for decades utilized SL to serve the people previously served in the Idaho State School and Hospital/Southwest Idaho Treatment Center (SWITC). While in state custody Idaho spent over $900/day to care for these individuals. The most medically involved participants would qualify for placement in Long Term Acute Care Facilities at a similar or greater daily cost. In either case the individuals involved in their care are paid at much higher rates than PCAs. The work involved for some staff includes risk to personal safety. For others, it requires high levels of responsibility in the face of unpredictable and complex medical conditions. These are not job conditions faced by PCAs or by most hourly SL providers. In early meetings with M&S, and H&W representatives, I provided rationale for why direct care staff in intense supports, although having the same job title, needed a much higher level of training, responsibility, and reliability than in hourly SL. At that time, I was assured that this would be taken into consideration. That does not appear to have been the case. The effect of basing the Intense Supports level rates on the same base pay, will be to create a perverse incentive to avoid accepting people in this level of care.

Recommendation: Set a higher base wage for Intense support staff than for Hourly support staff

3. High supports is set at exactly one half of the Intense Supports rate which will discourage any individual activities. “High Supports” allows for some of the billable hours for people in that level to be provided in groups of two or three. However, the service, and in particular the new HCBS rules, require that at least some of the hours are available to allow people to engage in individual activities with the help of staff. By setting the rate at half of the 1:1 rate, the department virtually guarantees that the HCBS rules will not be implemented. If two participants ever want to do different things, like attend different churches, the agency needs to have flexibility to staff some 1:1 time for both participants. An arbitrary ½ of the 1:1 rate makes this impossible without significant financial penalty to the provider. This is one more case of the Department creating perverse incentives by expecting providers to honor participant choice, and financially penalizing them each time they do so.

Recommendation: Create a rate that allows providers to provide 1:1 staffing for part of each day to allow for personal choice of participants in compliance with CMS/ HCBS regulations.

Submitted by DisAbility Rights Idaho

James R. Baugh, Executive Director

Article_Supported Decision-Making**

**An edited version of this article will be published in The Advocate

 

Idaho’s Office of Performance Evaluation (OPE) just released its report on the Idaho Medicaid managed care contract with Optum Idaho, the Idaho Behavioral Health Plan. (to view full report click here). The report examines some important issues and makes some worthwhile points, but it completely fails to answer the questions that are most important to Idahoans with mental illness and their families. We were hoping that the report would focus on access to treatment and impact on the lives of Idahoans with mental illness, but these outcomes were not addressed. However, if you read carefully, the report contains some serious findings which deserve everyone’s attention.

Optum Radically Reduced Psychiatric Rehabilitation

The most salient finding of the report is the reduction in Psychiatric Rehabilitation (called Community Based Rehabilitation Services or CBRS by Optum, and very similar to Psycho-social Rehabilitation or PSR). For more information on Psychiatric Rehabilitation in Idaho, see previous articles on this site. (For 1st article click here. For 2nd article click here). The summary of the OPE report features a graph of expenditures on PSR/CBRS trending steeply upward until the Optum contract is implemented when the trend is abruptly reversed. Optum has cut community mental health services overall by about $28,000,000 per year in spite of increases totaling about $1,000,000/year in family counseling and psychotherapy. Almost all of this reduction was in CBRS.

What Happens to the “Savings”?

Under the terms of the contract, Optum is allowed to keep the first 15% of total reductions in expenditures as an “administrative” fee. This creates a potent incentive for Optum to cut services without realizing any savings to the State of Idaho or the taxpayers. If Optum cuts services beyond the 15%, federal rules require them to reinvest the savings in additional Medicaid services. So far, there has been very little reinvestment of the annualized $28,000,000 in savings. At this point, no one has benefitted from the CBRS reductions except Optum. There has been no savings for the state, few service improvements for Medicaid recipients, big losses for providers, and a lot of mental health crises for people with mental illness. To be fair, some improvements are in the works. Peer Supports and Family Supports (evidence based practices using people in recovery and parents of children with mental illness) are becoming available in some areas. They are still far from full implementation, and not able to fill the void created by the CBRS cuts. Other enhancements to the service array, like partial hospitalization, Medicaid covered Assertive Community Treatment (ACT teams), or intensive home based services for children, are not even on the horizon. From the participant’s perspective, the greatest failure of the contract is the intense emphasis on immediately reducing CBRS without even having a plan for replacing it with other community services. The report claims that “Investment of savings has proved more difficult than the department originally anticipated because of the restrictive nature of federal regulations.” It does not elaborate on what federal regulations have prevented the Department or Optum from developing Medicaid approved services like those mentioned above.

The Report Says Nothing About the Effect of the Plan on People with Mental Illness

OPE evaluators report at length on the effect of this reduction on providers (and the Department’s failures in communication and planning for this effect), but nothing is said about the outcomes for participants’ mental health. At page 15, the report says “We cannot comment on the appropriateness of Optum’s criteria for clinical review…” From our perspective, this is the biggest issue with the OPE report. Idaho Medicaid covers treatment for mental health and substance use disorders, in order to prevent the suffering and death they cause and the huge social costs associated with these illnesses. The point of “Managed Care” is to increase effective treatments and practices which improve health outcomes. The Idaho Behavioral Health Plan is sadly deficient in measuring the mental health outcomes for participants. Reducing payments for CBRS is only beneficial if the mental health needs of Idahoans are still met, and the devastating consequences of mental illness are avoided at least as much as they were before. There is a lot of piecemeal and anecdotal evidence suggesting that the reduction of CBRS, without introducing replacement services, has had terrible results for people with mental illness and their families and has created greater burdens on counties, hospitals, law enforcement, jails and juvenile justice systems. However, there is no comprehensive source of reliable data to measure the relationship between the Behavioral Health Plan and these outcomes.

What is the Goal of the Behavioral Health Plan?

It would appear from the report that the Department’s primary goal for the Optum contract was to reduce the amount of CBRS paid for by Medicaid. “Overreliance on or misuse of psychosocial rehabilitation (PSR) was a major concern of the department and a strong influence on the department’s decision to incorporate managed care into its behavioral health system.” (Report, p. 6). It was apparently more important to them than reducing hospitalization. “The department explained that the primary reason it excluded inpatient services was because it worried that managed care contractors might choose the standard approach of focusing on the hospital [inpatient services] rather than on the issues with PSR.” This single minded focus on cutting CBRS led to a contract that did not emphasize good mental health outcomes, or effective preventive and community based services, or even prevention of hospitalization. In fact, the report suggests that two years into the three year contract, neither the Department nor the contractor knows how to incorporate more effective services to replace the lost CBRS. “The Governor’s work group envisioned 20 services that would comprise the core of its continuum of care—to be available to anyone who needs it regardless of their geographic location or enrollment in Medicaid. Only 9 of the 20 services were part of the state’s Medicaid plan.” (Report, p. 33) But they are only now developing a plan to achieve this. “The Department and Optum are working together to create a plan to spend savings within the limitations of federal regulations,” (Report p. 37).

Meanwhile the Department Has Not Measured The Effect on Participants’ Mental Health.

The Department acknowledges that one reason that PSR/CBRS was heavily used was that it was often the only tool in the tool box. With only nine of twenty recommended services covered by Medicaid, people used PSR as a substitute for unavailable services. A person who needed ACT, or Partial Hospitalization, intensive in-home services, or even community supports, often had to make do with PSR/CBRS. It is no surprise that, cutting off PSR/CBRS before more appropriate services are available, is causing increased mental health crises and all of the suffering and expense that entails. However, it seems that neither the Department nor Optum is tasked with monitoring the actual mental well being of the participants. No one is keeping track of the actual results of the plan in terms of mental health outcomes for people. The tools for tracking mental health outcomes have been available all along. This is not even a new idea. In 1998 the American Academy of Child and Adolescent Psychiatry (AACAP) published a Guide for tracking outcomes in Medicaid managed care contracts (to view the full guide click here) Here is one of several sets of measurable indicators recommended by AACAP:

Performance Category EFFECTIVENESS

Domain Functional Status — Quality Indicator
* Percentage of children per year placed outside the home due to emotional or behavioral problems.
• Number of days per year spent in hospital or residential settings as a ratio over days in all services.
• Number of arrests/legal referrals per year in population compared with community rates.
• Number of children in restrictive school settings (including in-home tutoring) due to emotional or behavioral problems.
• Improvement of impairment scores for a sample of patients in the program population (See Appendix B for examples of currently available instruments).
• Number of days of school attended per year.
• Rates of graduation from middle and high school.
• Number of suicides and attempts per year compared with national and regional prevalence rates.
• Number of days in detention/incarceration per year.
• Number of child abuse reports and infanticides.
• Number of youth homicides.
• Number of teen pregnancies.

Clinical Symptoms
• Decrease in symptom level for a sample of patients in the population.

It isn’t hard to come up with an equivalent list of outcomes for adults such as substituting evictions and homelessness for “out of home” placements, and adding employment or job loss instead of school outcomes. You can’t manage what you don’t measure.

Currently, Optum is required to measure very little other than money spent on claims, number of grievances and appeals, and some provider satisfaction surveys. The Department relies almost entirely on Medicaid claims data to evaluate the system. The OPE report acknowledges that they did not have adequate data to measure whether costs were shifted to agencies other than the Department. “We did not complete a comprehensive investigation of every place a member could go if they were denied services under the Idaho Behavioral Health Plan and subsequently experienced a mental health crisis. However, we examined data provided by the Division of Medicaid and the Division of Behavioral Health which did not show unexplained increases above historical trends” (p. 32). In other words they did not look at arrests, jails, juvenile detentions, runaways, suicides, expulsions, evictions, job loss, out of home placements, symptom increases, etc. Optum does not collect this information, and neither does the Department.

Psychiatric Rehabilitation is an Important Component of a Mental Health Program

The report does not question the department’s assumption that PSR/CBRS is overused. Although it has sometimes been used as a substitute for other more appropriate services which are not available in Idaho, it is also often the right service for the person in question. Optum has reduced CBRS for children so drastically that is well on its way to eliminating the service. This policy ignores the treatment authority on which Optum relies for its clinical decisions, the AACAP. Since 1996 the AACAP has had standards for developing managed care contracts. For children with high level needs they conclude: “Criteria for access to the “high utilizer” track should be well-defined and based at least on functional impairment as influenced by support systems and risk factors. Such criteria should be independent of assigned diagnosis… Rehabilitative services are an integral component of this track, maximizing utilization of available educational and vocational services offered through public agencies, as well as other supplements dictated by the child’s and family’s needs. Such services should address practical daily living, employment, and social skills” (emphasis added). (To see the AACAP Managed Care Principles click here). Rather than trying to eliminate CBRS for children, the AACAP, evidence based guidelines suggest that all children with more severe conditions should have access to rehabilitative services. CBRS for adults is also included in American Psychiatric Association Guidelines.

Conclusion:

The OPE Report has valuable information, and it highlights serious mistakes in planning, and preparation. However, the report does not even consider whether the contract served people with serious mental illness well, or whether it has started an ongoing crisis in mental health. When it is read carefully, the report reveals that the department was so focused on cutting PSR/CBRS that they failed to plan for the services needed to replace it. So now we are sitting on money for services but we are not providing the services, and we are paying for it with people’s mental health and possibly with their lives.

Idahoans with Disabilities in the Health Insurance Gap: The Healthy Idaho Plan

Contrary to popular opinion, not all Idahoans with disabilities, living in poverty, are eligible for Medicaid, Medicare or any other health insurance program. Many low income Idahoans with serious disabilities fall into the health insurance gap (for information on the gap, http://closethegapidaho.org).

Governor Otter’s work group on Medicaid Redesign* recommended that Idaho create our own solution to the health insurance gap by requesting a waiver of federal Medicaid rules. State and private stakeholders designed a plan which could solve the problem. It is called the “Healthy Idaho Plan”. The plan uses federal Medicaid funding to buy health coverage on the state insurance exchange for eligible families between 100% and 138% of the federal poverty level**, and extends Medicaid to eligible families below the poverty level. The plan would also extend Medicaid coverage to low income people with disabilities, and chronic health conditions, who are not currently covered. The Healthy Idaho Plan will be a great benefit to many Idahoans with disabilities.

Two large groups of people with disabilities are currently excluded from coverage. Of the roughly 41,000 Idahoans who have a serious and persistent mental illness (SPMI), only about 10,000 are currently eligible for Medicaid. About 12,000 more get some level of treatment each year from the Department of Health and Welfare, but only if their illness becomes so severe that that they pose a serious risk to themselves or others, or if services are ordered by a court. This group (SPMI) includes only people whose mental illness is disabling and recurring. The Healthy Idaho Plan would cover almost all of these people. The plan would provide federal funding for the care they need and relieve the burden on county indigent funds, and state general funds for catastrophic health care, and the Division of Behavioral Health programs. Currently, most Idahoans with SPMI have no coverage for mental health treatment, or for the expensive prescription drugs needed to control their symptoms.

People, who acquire disabilities after a period of employment, and are unable to work, often qualify for Social Security Disability benefits. Federal law, however, prevents these people from obtaining Medicare coverage for two years after the onset of their disability. If their Social Security benefits exceed $734/month, they are also excluded from Medicaid coverage, unless they are in need of nursing home care. There are always thousands of Idahoans with disabilities in this waiting period. A recent study of a random sample of county indigent program claims conducted by Dr. Douglas Dammrose revealed that 42% of the claimants are in this category***.

There are other people with disabilities, including many veterans, who are in this coverage gap due to individual circumstances. All of them need affordable health care coverage. People with SPMI need a robust benefits package to get adequate care and to maximize savings from state general fund programs. Many people in the Medicare waiting period may need long term in-home supports and services to keep them out of expensive nursing home placements. Idaho must insure that people with particular health care issues caused by disabilities, have access to regular Medicaid coverage to meet their needs and prevent higher cost services.

Conclusion:
The Healthy Idaho Plan would provide health care coverage for tens of thousands of low income Idahoans with disabilities. This would replace state and county tax dollars being spent in county indigent and state catastrophic health care and state mental health programs, with 90% federal Medicaid funds. This saves Idaho taxpayers tens of millions per year. It would provide access to mental health care and prescription drugs for people with serious and persistent mental illness. It would provide ongoing medical care for people with disabilities who are waiting for Medicare coverage. It would also make health care coverage affordable for the rest of the 78,000 Idahoans in the health care coverage gap.

* http://www.gov.idaho.gov/pdf/1204%20Medicaid%20Workgroup%20Report.pdf
** https://www.healthcare.gov/glossary/federal-poverty-level-FPL
*** http://www.healthandwelfare.idaho.gov/Portals/0/Medical/MoreInformation/08-14-2014%20Medicaid%20Redesign-Idaho%20Doug%20Dammrose.pdf

DRI was asked to provide testimony to the Idaho Advisory Committee of the U.S. Commission on Civil Rights concerning Idaho’s mental health system and compliance with the U.S. Supreme Court Decision in Olmstead v. L.C. This is what I submitted.

Testimony of DisAbility Rights Idaho.