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Psychosocial Rehabilitation (PSR) is NOT the same as Developmental Therapy.

By DRI

One of the misguided changes made to Idaho Medicaid benefits in order to cut the budget, is the refusal to allow a person who has both a psychiatric illness and a developmental disability (DD) from receiving both developmental skill building services and psychosocial rehabilitation.  People who have both diagnoses are expected to give up treatment for one or the other. This makes no more sense than asking a person with both diabetes and heart disease to pick which one they want to receive treatment for.
There are about 600 Idahoans on Medicaid who have a developmental disability (such as autism, or intellectual disability) and also have a severe and persistent mental illness, or emotional disturbance.   Dealing with both of these conditions at the same time can be very challenging.  Idaho Medicaid covers both developmental services (like developmental therapy and residential habilitation) and mental health services (like psychosocial rehabilitation, and partial care). However, under a new rule recently enshrined in Idaho Code by H 260, Idaho Medicaid will cover only one of these services even if the person qualifies for both.  The rationale for this approach is that since all of these services include teaching skills, any one of the services can accomplish the same goals.  Unfortunately, the fact that the services all include some type of skill building is the only thing that they have in common. The Department of Health and Welfare’s (H&W) web site offers this one sentence justification: “A participant may obtain all of his specific skill training service needs through one program even when he has dual diagnoses”. But just saying something does not make it so.
The Department’s own rules do not allow Developmental Disability Agencies (DDA) to provide PSR, unless they are also a licensed Mental Health PSR provider. Their rules also require specific credentials and certification of the people who provide PSR which is not required of people who provide DDA services. [i] Agencies which provide developmental therapy and Intensive Behavioral Intervention must be licensed and meet and meet a host of requirements, not required of PSR agencies.[ii] People who provide developmental therapy must be supervised by people with specific credentials and experience in developmental disabilities. [iii] PSR providers are not. Although these services both include skill building, they require radically different capabilities, training, credentials and supervision.  How is it that DDAs are qualified to provide PSR services to people with a dual diagnosis but not to other people with severe and persistent mental illness? Why should we believe that PSR workers are qualified to provide Intensive Behavioral Intervention to people with dual diagnosis but not to other people with developmental disabilities?
Most people with both diagnoses will choose to keep their DD services and abandon their PSR.  This will happen because many of these people need the DD services for day to day maintenance. For many adults their living situation is tied to their DD services, as in Certified Family Homes or in Supported Living apartments.  For these people, giving up DD services means being forced out of their homes.  The overall effect of this policy will be a wholesale loss of PSR services for people with both a developmental disability and a severe and persistent mental illness.  This will result, over time, in increased mental illness symptoms, emergency room admissions, involuntary hospitalizations, arrests and other costly consequences as well as unnecessary increased suffering.  Some of these people are already experiencing these problems.
PSR providers are trained in psychiatric rehabilitation and must be credentialed by the USPRA. The service includes helping clients to recognize emerging symptoms, or changes in symptoms, helping people work through difficulties caused by delusional thinking, general self care for mental illness, monitoring symptoms and medications, insuring that clients participate in ongoing mental health care, maintaining housing and when appropriate employment, and problem solving for other life stressors.  DDA staff simply is not generally qualified to do these things and are not expected to do them based on DDA rules.
PSR providers however are not trained in designing individual developmental plans, intensive behavioral intervention, behavior shaping, reinforcement schedules or many other components of developmental programs. Medicaid requires specific training and certification for DD service providers which are not required for PSR workers.
The idea that DDAs will provide the same mental health symptom management, mental health monitoring, and psychiatric rehabilitation that people with severe and persistent mental illness receive through a qualified and credentialed PSR provider; or that a PSR provider will provide the same intensive behavioral and developmental training that DDAs provide, is a convenient fiction to justify elimination of a service for purely budgetary reasons.  When we make policy decisions based on convenient fictions there are always undesirable consequences.
This policy has been in effect since January 2011. It will take more time for the damage done by this policy to become evident or widespread.  However, there are people who are already experiencing adverse effects such as suicide attempts, hospitalizations and arrests.

[i] IDAPA 16.03.10.130 (PSR agency requirements)
[ii] IDAPA 16.04.11 (Developmental Disability Agency requirements)
[iii] IDAPA 16.04.11.420 (DDA staff qualifications)

“Blended Rates” for Medicaid Developmental Therapy is Very Bad News for People with Disabilities in Idaho.

By DRI

The Idaho Department of Health and Welfare (IDHW) has implemented the new “blended” reimbursement rates for adult developmental programs. “Blended” rates were suggested by DD service providers and endorsed by the Department as a way to cut costs for Fiscal Year 2012. The suggestion was embraced by the Legislature in H 260 (see the previous post for information on H260).
Developmental therapy is teaching new skills and behavior patterns to people with developmental disabilities, such as, intellectual disabilities, autism or cerebral palsy.  This might be basic self care skills like dressing, grooming, bathing or going to the bathroom, or independence skills like shopping for food, cooking, managing money, using public transportation and house cleaning.    Until recently, Developmental Disability Agencies (DDAs) have been paid four different rates for providing the therapy based on whether it was provided on a one to one basis, or in groups and whether it was provided in the community or in a facility.  A distinction is no longer made between individuals or groups – there is one rate for serving people in the community ($13.36/hour/person) and one for providing developmental therapy in a center ($12.08/hour/person).   
 Some skills can be taught to some people very well in groups. Some skills cannot realistically be taught in groups at all. Teaching a person to use the bathroom, bathe or shower, dress, or take care of personal hygiene in a group is patently impossible or inappropriate. Most self-care and independent living skills are best taught one to one.
Whether skills can be taught in a group often depends greatly on the level of learning difficulty experienced by the learner. People who can learn on an abstract level and can generalize a skill to be used in different circumstances may be able to benefit from group instruction. But many people with intellectual disabilities, brain injuries, or severe autism simply cannot do this. People in these circumstances cannot learn “how to use the bus” but with good individual instruction can learn how to take a particular bus route every day to a particular destination. They may not be able to learn “how to use a stove” but can learn how to make a particular set of meals on a particular stove, with markers on their stove and pictures geared to their own adapted stove in their apartment. I could go on to list hundreds of examples, but these illustrate the principle well enough.  Indeed, the development of adapted tools and environments and individualized learning strategies in the 1970’s made it possible for hundreds of thousands of people with disabilities to move out of state institutions and to live in the communities with some supports and assistance. 
Idaho’s implementation of “blended rates” threatens to virtually eliminate individual therapy by making group therapy much more profitable and making individual therapy a money losing proposition. The rate that Idaho Medicaid has set for home and community based  therapy ($13.36/hour) will not cover the cost of a minimally qualified staff person and their payroll taxes, and certainly will not  pay for supervision by a professional, training, travel to client’s homes, insurance, etc. In most cases the total cost of providing the service will exceed the new rate. Groups of three, however, will have about the same cost but will be reimbursed at $40.00/hour. This is potentially quite profitable. Medicaid’s hope that agencies will continue to provide individual services at a loss and be satisfied with making it up on a smaller number of group therapy hours has not been fulfilled. Most agencies are virtually eliminating individual therapy and converting almost everyone’s programs to group therapy.  Skills that must be taught one to one are not being addressed. Individual learning capabilities are being ignored. Agency employees are being laid off.  The system grinds on using state and federal funding, but it will no longer serve its intended purpose which is teaching people with significant disabilities the skills they need to live their lives in the community. 
Imagine that you go to a language instructor and ask to learn Spanish.  They tell you they can provide really effective instruction but it will cost you $5,000.00.  You tell them that you can’t afford that. Well for $4,500.00 they say they can give you an English Spanish Dictionary and a recording of the pronunciation of the 500 most commonly used words. You’re pretty sure that you’re not going to be able to figure out how to speak Spanish from that, but then, hey, you saved $500! 
Medicaid will report to the legislature that the change is working because they are spending a small fraction less in state funds. Provider agencies will breathe a sigh of relief because they avoided some cuts that may have put them out of business and now have a way to stay in business and perhaps increase their profits. But in reality, we all lose with this short sighted change because it has virtually eliminated the most effective tool we had for building community survival skills for people with developmental disabilities, individualized instruction.  The government will now pay a little less for a service, but will receive far less value for their expenditure. When it becomes apparent that group instruction is not meeting people’s needs, developmental therapy will lose its credibility. Over time we will pay more for the many different problems that will arise from the lack of effective skill building and behavior training. But, as usual, the biggest price will be paid by people who need one to one instruction to get by in the community.  For some of them they could lose everything, their opportunity, their independence, their home, their freedom.

Community Based Disability Services Will Be Seriously Hurt by H 260.

By DRI

My last blog was posted in the middle of the Idaho legislative session and chronicled the terrible effects  H221 would have on Medicaid services for people with disabilities.  I am pleased to report that H221 was held in committee and did not pass.  Unfortunately, it was replaced H260 which dropped some of the worst parts of the first bill, but still has enough harmful features to qualify as a disaster. H260 passed easily, was signed by the Governor and is now law.
Fortunately, H260 does not include the elimination of developmental therapy for some adults.  It does not include the section forcing people with developmental disabilities over the age of 45 to switch to the nursing home based waiver. But, it still has a lot of sections that will degrade services for people with disabilities and threaten the welfare of many.
Some of the changes made by H260:
1.       Change adult developmental disability (DD) services budgets to tiered budget levels “similar to children’s services”.  This could result in large reductions in the amount of services for many adults. The Department expects this change to reduce adult DD services by $2,000,000 per year in state funds or $6,667,000 in total funds. The tiers will likely be based mostly on scores obtained on the Scales of Independent Behavior –Revised (SIB-R). Although the SIB-R claims to yield a score for level of support needed, the assessment instrument only asks about the person’s level of skills, not their individual needs. There is probably a statistical correlation between these two levels, individual circumstances can result in huge differences in the cost of needed services between two people with the same score.  Grouping people into tiers will result in some people getting less than they need and some getting more than they need.  Even if this works out on average, individual people could be harmed by the system.  In any case, the only way that budget tiers can save $6.6 million, is by cutting a lot of peoples’ basic supports.
2.       Prohibits a person from receiving both psycho social rehabilitation (PSR) and developmental Services, even if they have both a developmental disability and a mental health diagnosis and qualify for both services. Although both services involve “skill training” they are not the same. The people providing the services have radically different training and qualifications, the types of issues addressed are different and the linkage to the rest of the service system is different. Some of the 600 people who have both conditions will face serious consequences by having to choose only one service.
3.       Requires Health and Welfare (H&W) to develop a “blended rate” for developmental disability services. Medicaid currently pays a higher rate for individual compared to group DD therapy. This will result in the same rate for both types of supports. .  This means that it will twice as profitable to do therapy for two people at the same time and three times as profitable for three people. In fact it will probably be cost prohibitive to provide individual therapy. This will be a powerful incentive to DDAs to make all of their services group services. Unfortunately group services may not be appropriate in many cases and integration will be more difficult.
4.       Repealed all automatic Medicaid rate adjustments in Idaho Code. This includes the rate formula for personal assistance services (PAS). The rates were previously based on a formula tied to the average wages paid to nursing assistants in nursing homes. This formula has saved PAS from the stagnant rates that have plagued other services like DD therapy. Under H260, all rate increases have to go through a specific legislative authorization and appropriation process.
5.       Limited physical, occupational and speech to the Medicare caps, except for children who can prove that they have a medical necessity for more.
6.       Adult dental services will be limited to adult coverage shall be limited to medically necessary oral surgery and palliative services.
7.    Mandates the Department to impose co-pays on some services, not yet identified.
8.       Mandates the use of managed care “approaches that provide case management for high-risk, high-cost disabled adults and children that reduce costs and improve health outcomes, including mandatory enrollment in special needs plans. Managed care contracts to pay for behavioral health benefits as described in executive order number 2011-01 and in any implementing legislation. At a minimum, the system should include independent, standardized, statewide assessment and evidence-based benefits provided by businesses that meet national accreditation standards. The elimination of duplicative practices that result in unnecessary utilization and costs. Contracts based on gain sharing, risk-sharing or a capitated basis” (sic).
9.       Eliminates all payments for “collateral contact”.
10.   Eliminates service coordination for people getting PAS waiver services.
11.   Cuts the amount of time reimbursed for assessments and evaluations from 12 hours to 4 hours.
12.   Changes Certification criteria for Certified Family Homes and add licensing fees
All of these changes deserve an entire blog post to themselves and I will be addressing some of them in future posts.  People concerned for the welfare of people with disabilities in Idaho should get detailed information on programs that are likely to affect them and be watching for publication of new rules for public comments.  Watch this site for future posts.

H221 violates federal law and deprives vulnerable adults of essential safety net services.

By DRI

The most egregious problems with H221 are the elimination of developmental services for people who are not eligible for waiver services and for all people over the age of 45 (p. 10 lines 43-46).
1.       People with developmental disabilities who do not meet institutional level of care will lose all developmental supports and services. 
a.       Who are these Idahoans? -They are 524 people who have a severe, lifelong disability occurring at birth or in childhood.  The disability must cause significant limitations in at least three major areas of life activity, and it must, by definition, require lifelong services and supports which are planned and supervised (see definition from Idaho Code, attached).  People with developmental disabilities (DD) who do not meet the Idaho standard for institutional care can have a measured level of independence skills as low as a child who has just turned eight (8) years old, a second grader. They may also have other conditions such as epilepsy, cerebral palsy or autism. They can function slightly above the 8 year level if they have severe and frequent maladaptive behavior like violence or tantrums.
b.      What services are left for them? -They may receive medical services like physical therapy if they have physical illnesses, but they will not have any other service designed to help them live safely or independently at home.
If a parent were to abandon an eight year old without any supervision or supports, they would be liable for child neglect. Yet the state is abandoning these vulnerable adults by removing their only safety net service. Some of these adults have some support from families but for many, their parents are dead or elderly, and they may not have any siblings available for support. H221 would eliminate their services regardless of the lack of family or community supports.
2.       People Over 45 who do meet the level of care provided in an institution for people with Intellectual impairments (ICF/ID) will be transferred to a waiver for people with physical disabilities, if they need nursing home care.  Otherwise they lose all in home supports.
a.       Who are these Idahoans? – These are people who have an evaluated independence level of less than eight (8) years, or slightly more than eight years with severe behavior problems.
b.      What services are left for them? –
                                                              i.      Some will be transferred to the Aged and Disabled (A&D) waiver if they can prove that they need nursing home care.  They must be evaluated by a nurse using an assessment instrument, for medically related personal care needs such as assistance with bathing or eating and chore services if they cannot do things like cook or clean house, do to physical limitations. But under the A&D waiver limits, no one can receive more than 8 hours per day of personal assistance under the A&D waiver. Even people who qualify for the A&D waiver may need 24 hour supervision, since all of them function at less than an 8 year level of independence. This will not be available in their current placements forcing them into institutional care.
                                                            ii.      Since the A&D waiver has completely different eligibility criteria from the DD waiver, some people on the DD waiver will not meet the nursing home level of care requirements. People who do not have physical limitations, but do have severe intellectual impairments and behavioral problems, may not qualify for the A&D waiver at all.  After H221, their only option will be institutional placement. 
These sections violate Federal Medicaid laws and the Americans with Disabilities Act.
1.       Federal Medicaid laws require people who need “active treatment” to receive it in either the ICF/ID level of care or in the Skilled Nursing level of care. The federal definition of who needs “active treatment” is attached. It would include every person currently on the DD waiver and many of the people who currently do not receive DD waiver services. The federal laws and regulations do not make any arbitrary age cutoff much less one as early as 45. The Centers for Medicaid and Medicare Services (CMS) have also required states to show that their HCBS Waivers provide an equivalent for active treatment.  By prohibiting active treatment for people over 45, H221 places Idaho in immediate violation of federal Medicaid standards. 
2.       The Americans with Disabilities Act as applied by the Supreme Court in Olmstead v. L.C. and E.W. requires state Medicaid programs to insure that people with disabilities are not forced to accept institutional care when community based services could meet their needs. H221 prohibits people with developmental disabilities from receiving active treatment in Idaho’s community based waivers, leaving the ICF/ID facilities as the only place where active treatment can be provided.  This is a violation of the ADA integration mandate on its face and puts Idaho in direct conflict with the ADA, and the Olmstead decision. (See attachment on the ADA).
Statutory reductions in psycho-social rehabilitation (PSR) impose needlessly rigid and inadequate limits which will force many people with severe and persistent mental illness into higher cost services or into the criminal justice system.
1.       Allocating the caps by the week, instead of the month or the year robs people of flexibility needed to respond to crises. At the same time it induces people to use the maximum number of hours each week to keep their allocation.  Authorizing PSR hours by the month would allow a person to reduce hours when they are doing well and have hours available when they need them for a crisis. Establishing a weekly limit in statute prevents people from budgeting their services in the most efficient way and insures that they will not have enough hours to deal with a crisis when one occurs. This is another example of why most of these changes should be made in rules and not imposed as inflexible statutory requirements.
2.       Four hours is not enough time to deal with a person who is decompensating or dealing with a personal crisis. When a person begins to be overwhelmed by symptoms of increasing severity they need intensive supports to avoid hospitalization. With a limit of four hours per week PSR workers are forced to simply send the person to the emergency room or call law enforcement when the hours run out.  This is already happening under the current five hour cap.
Imposing Medicaid caps on physical therapy, occupational therapy and speech therapy will be inadequate for people with lifelong disabilities. Medicare caps are devised for the purpose of addressing an injury or trauma caused need for these therapies. People with cerebral palsy, for example, need a lifetime of therapeutic interventions to maintain their level of functioning, and they may need many sessions to adapt to new augmentative communications devices. By putting these limits in statute, H221 ignores the unique needs of people with disabilities. These issues should be addressed in negotiated rules, not statutes.
H221 prohibits people with dual diagnoses of mental illness and developmental disability from receiving appropriate services.  About 600 people in Idaho have the great misfortune of having both a serious mental illness and a developmental disability. About 300 of these people are children. Very few professionals are trained or qualified to treat both conditions. Making a person choose between treatment for one or the other is like asking a person with both diabetes and heart disease to choose which condition can be treated. H221 does this on page 15 lines 41-45 and again on page 16 lines 25-27.  This was suggested as a short term limitation to get through temporary budget crisis. As a permanent change it will have serious consequences. Developmental specialists are not trained to recognize psychiatric symptoms and PSR workers are not trained in behavioral management techniques for people with autism, for example. These services are not duplications but separate and necessary interventions designed to keep people safe in the community. In some cases the Medicaid rules for one service would exclude dealing with the problems addressed by the other. This provision also violates the Americans with Disabilities Act by denying access to one service based on a person’s need for another service caused by their specific disability.

Liberty and Disability

By DRI

Liberty and Disability
The preamble to the Constitution of the United States says “We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defence, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.”(spelling and capitalizations are in the original, emphasis is added). 
The framers and drafters of our Constitution clearly intended that the national government should be committed to protecting the liberty of its citizens and actively securing the blessings which liberty has to bestow.  It has taken over 230 years to understand what that commitment means. At the time, the blessings of liberty were not secured for slaves, or for women. But America eventually found ways to secure the blessings of liberty for both groups. No thought was given to how the nation would secure the blessings of liberty for people with disabilities until recently.
In the 1960s tens of thousands of people with mental illness or intellectual disabilities were incarcerated in shocking human warehouses without having committed a crime and often without the benefit of a trial or a hearing.  People with physical disabilities were also given no choice but life in restrictive nursing homes where their lives were short and devoid of the freedoms that the rest of us take for granted.  There were no armies of volunteers or charitable organizations to assist these Americans.  The blessings of liberty were no more than a forgotten dream. It seems that securing the blessings of liberty for people with disabilities requires more than just leaving them alone or releasing them from institutions to die on the streets.   If a person is not capable of moving their arms or legs, of getting out of bed, of eating, or using the bathroom, they cannot experience liberty until they have assistance. To really experience the basic freedoms of choice, of action, of association and of movement, some people with disabilities need the regular assistance of another human being.  In order to be free of the incarceration of institutions, some people with mental or cognitive disabilities need specialized training and supports in their homes and communities. In the last forty years we have learned how to secure the blessings of liberty for people with disabilities through government sponsored community based services, primarily through the Medicaid program. With these services people with disabilities have moved into homes and apartments of their choice, when they could afford it. They have directed the people who provide the supports they need and they have experienced real liberty for the first time. If the mission of government is to spread freedom and to promote liberty, there is no finer example of that mission than community based services for people with disabilities.  People deprived of freedom of movement and choice through no fault or action of their own, were finally liberated by redirecting government resources away from efforts to segregate and confine them, and into programs that liberate and free them.  We should not be surprised that this is less expensive than the institutional model.  In this case, freedom isn’t free, but it is a lot less expensive than the alternative. 
If we truly value freedom, if we truly want to “secure the blessings of liberty” for our citizens, we must preserve the programs that make that liberty possible.

Medicaid- When Are Cuts NOT Savings?

By DRI

Of course the Idaho Legislature faces some tough decisions.  The projected revenue (whether accurate or not) is far short of the cost of running the state government for 2012. Medicaid is a very large part of the cost and so it is a natural target for cuts.  But, like any enterprise, you can’t always balance the budget by cutting the largest cost centers. A retailer can’t recover by closing its most profitable stores. A family can’t make ends meet by eliminating food from the budget, or selling the car that takes them to work.  Medicaid is the largest single source of federal revenue to the state of Idaho. It is our best opportunity for bringing back into the Idaho economy the hard earned tax dollars Idahoans have sent to Washington D.C. For every three dollars of State funds spent on Medicaid we bring back to Idaho seven dollars of federal funds. If we cut 3 dollars, we leave the 7 dollars in Washington.
Where do Medicaid dollars go? Medicaid is extremely labor intensive. Almost all of the money funds jobs for hard working Idahoans. When they get paid they buy food, shelter, clothing, and other Idaho products, and they pay taxes. Then the businesses they support pay wages for other people’s jobs and they also pay taxes. So what is the effect of cutting $50,000,000 in state funds from Medicaid?  We suck $166,000,000 out of Idaho’s economy. We kill about $208,000,000 in total economic activity. We eliminate about 4,000 Idaho jobs. Based on economic studies in other states we lose about $30 to $50 million in tax revenues wiping out the “savings”.  We cause untold suffering and some deaths.  We force people into poverty and unemployment. We shift Medicaid recipients into state funded programs like county indigent services and the catastrophic health care fund. We shift people with severe mental illness into Hospitals, courts systems, jails creating a huge burden on local taxpayers.  Even if only 10 percent of the cost is shifted, the added state tax burden is estimated to be about $16.7 million in the first year and more after that. There is every reason to believe that the shift would be far higher than that.  This does not even count the cost shifts that will take place within Medicaid from lower cost optional services to higher cost mandatory services. This does not count the costs of increased psychiatric hospitalization, emergency room visits.
 Does anyone still think we can solve our budget problem by cutting Medicaid?
Like any business or family in economic trouble, we need to cut out waste, but preserve and increase our ability to bring in income.  You cannot balance the budget by destroying jobs, eliminating essential public health services and shifting costs to local government while leaving $116,000,000 of our federal tax dollars in Washington D.C. 
 A little effort on the revenue side, whether it is tobacco, alcohol, or sales taxes will prevent a lot of suffering, save lives, and might actually balance the budget.  Cutting $50,000,000 out of Medicaid will do just the opposite.

Families and Volunteers Cannot Replace Developmental Disability Agency Services or Psycho-social Rehabilitation

By DRI

Few, if any, volunteers have the training or skills to provide Developmental Therapy.  According to the Idaho Administrative Rules (IDAPA 16.04.11.10.14) “Developmental therapy is the use of therapeutic intervention and positive behavioral techniques that result in measurable skill acquisition or prevent regression …”  
Most volunteers from the community have no training or education in “therapeutic intervention” or “positive behavioral techniques” and volunteers will not have professional supervision. Currently, developmental therapy (DT) requires supervision by a “developmental specialist” with specific qualifications and experience, on a weekly basis. Without this supervision and training the therapy is unlikely to have the desired outcomes. DT should never consist of merely taking a person to the store.  It should include teaching the person how to behave in the store or managing tantrums or inappropriate behavior in the store. It may also include providing first aid for seizures in the event that one occurs. Injecting an untrained, unsupervised volunteer into some situations could be risky for the volunteer, the person with a disability or others.
PSR also requires trained and qualified professionals.  PSR professionals go into the homes of people with severe and persistent mental illness (SPMI).  They assess the person’s status and symptoms and evaluate their surroundings for health and safety concerns.  They monitor and assist when necessary with getting people to their medical and mental health treatment appointments. They provide 24 hour on-call response to emergency situations and, when needed, they help people in crises to get to hospitals, emergency rooms or crisis centers. They also guide people through other personal crises which the person may find overwhelming such as evictions or family deaths. People with severe and persistent mental illness may or may not have complete medical control of their symptoms such as hallucinations or delusions, panic attacks or suicidal depression.  The severity of these symptoms may wax or wane depending on their circumstances and the need for changes to medications. The proper supports for people with SPMI can be the difference between life and death as well as the difference between home and hospital.  There are few volunteers who are capable of performing this work. 
There is no current infrastructure to provide training, supervision, insurance and liability protection for volunteers to perform these tasks.  The PSR worker is exposed to risks for themselves and for the people they serve.  They need to be a part of a network that includes ready access to supervisors, clinicians and consultants.  They need to be familiar and connected with other agencies and know how to efficiently access community resources for their clients.  Someone needs to follow up and provide coverage when they are sick or unavailable. They need to be replaced when they stop volunteering. They need insurance protection from liability and injury.  These things are not readily available from local churches or families.
A large contingent of qualified and willing volunteers will not spontaneously arise from the elimination of DD and PSR services.  If we are confident that volunteer assistance could replace these services we should be willing to guarantee that a person’s services will continue until adequately trained volunteers are obtained to replace them, and that the services will be restored if the volunteers are no longer available.
There may be a few examples of people whose disabilities fall on the milder end of the spectrum who would get by for a while with volunteer services, if they could be found.  However if services are eliminated or severely reduced we must also consider the people who have the most severe symptoms, or the highest levels of need for these supports.  If volunteers cannot meet these needs, we must accept serious consequences and greater cost burdens shifted to other areas.  Our expectations for families and volunteers to step up to meet these needs should be realistic. Historically, these services have never been provided by volunteers or family members to any significant degree.  If we look to a period of time before Medicaid funding for these services, Idaho operated Adult and Child Development Centers (ACDC) with general funds and state employees. This program was privatized through Medicaid saving the state large sums of money.  Before ACDCs people with intellectual disabilities were believed to be incapable of learning and were generally institutionalized in state funded facilities (In the 60’s ISSH had 1,100 residents) or kept in large shelter homes in poor conditions without training.
Medicaid’s scenario for eliminating these services applies to adults.  Adults receiving these services may or may not have living family members. Just as baby boomers make up the largest group in the general population, they also make up the largest group of people with disabilities. Their parents are now either deceased or of advanced age.  Few can offer any more support for their adult children than they already do. If these people have siblings, they may not live in the same area and they have primary responsibility for their own children and spouses. Families that can and will provide some support to people with disabilities are often already doing so, and are stretched to the limit.  In these cases, they cannot make up for services lost by elimination of the programs.
Conclusion: Untrained and unsupervised volunteers will not have the skills, the support or the resources to replace Medicaid services. If volunteers can be found, they will need training, supervision, liability and insurance coverage. We should continue providing services for people with disabilities until the volunteer services are available and after they stop.

Medicaid Budget Threatens Developmental Disability and Mental Health Services

By DRI

On January 17th, The Idaho Department of Health and Welfare (DHW) presented their budget to the huge joint meeting of the Finance, Appropriations, and Senate and House Health and Welfare committees.  It is not a pretty picture.  Based on the Governor’s proposed budget, DHW is expected to cut $25,000,000 in state funds from the amount they need to maintain services at the current level. This will result in the loss of about $59,000,000 in Federal matching funds, for a total cut in services of about $84,000,000 for 2012.DHW Director, Dick Armstrong, said that he believed that we could replace current Medicaid services for people with mental illness and developmental disabilities (DD) by relying on family members and volunteers from the community.  Medicaid Director, Leslie Clement presented two scenarios to cut the budget.  One involved completely eliminating adult Developmental Disability Agency (DDA) Services and Psycho-social Rehabilitation (PSR) for adults with mental illness. This scenario would preserve some Home and Community Based Services (HCBS) for people with developmental disabilities provided in Medicaid waivers. The only other scenario she presented, involves a range of serious cuts to a whole spectrum of community services for people with disabilities, including cuts to HCBS waiver services.
DDA services for adults include developmental therapy, adult day care, and some assessment services. These services have been the core of community supports for people with developmental disabilities for decades.  Developmental therapy involves individual assessment and plan development and training programs designed to teach people with DD self care and independent living skills and to decrease problem behaviors.  It requires the skillful use of applied behavior analysis and careful data recording, as well as professional review of the data to determine if the strategies being used are effective.  It must be provided by agencies with qualified professionals supervising trained staff.  It has never been provided by unsupervised volunteers even if volunteers were available.
PSR is a service which includes trained professionals visiting people with severe and persistent mental illness and insuring that they have what they need to stay safe in the community. This may include monitoring symptoms, monitoring compliance with medications, helping them through crises, helping them get to their medical and mental health appointments, and taking them to emergency rooms or hospitals when necessary. PSR is an evidence based practice which has been shown to help keep people with serious mental illness from relapses and re-hospitalizations. PSR providers are trained and certified professionals who deal with serious problems. It is not a service which can be provided by volunteers.
Each of these services plays a crucial role in the system of supports for people with disabilities in Idaho.  Neither of these services has ever been provided on any regular basis by volunteers. While some family members have been devoted enough to gain these skills and provide some of the tasks associated with the services, most families are already doing what they can to support their family member with a disability. Most other family members cannot possibly step in to the role played by these services for their loved ones. The idea that families and volunteers will somehow develop the huge amount of resources, training, time and expertise to replace these services is sheer fantasy. Uncertified and unlicensed volunteers risk doing more harm than good. The use of untrained and unsupervised volunteers raises issues of liability, licensure and certification.  Proper training, certification and professional supervision of volunteers would cost just as much as the Medicaid program which currently provides the services. 
There are alternatives to these cuts.
A Cancer Society proposal to increase the tobacco tax would raise about $50,000,000 per year for the Medicaid budget. This would more than make up for the $25,000,000 shortfall produced by the Governor’s budget. A range of other possible revenue raising taxes would also eliminate the need for these devastating cuts. These include, a temporary sales tax increase, removing some tax incentives which have not produced the results they were supposed to produce, collecting taxes owed on internet purchase and reducing the number of sales tax exceptions. 
In addition, the Governor’s budget is based on a prediction that revenue will rise 4.2% in fiscal year 2011, but will rise only 3% in 2012. This estimate is in direct contradiction of the state economists in the division of financial management who are predicting revenue growth of 6.9%.  Accepting a revenue projection closer to the one supplied by the experts would also remove the need for cuts to Medicaid programs to balance the budget. Although a revenue projection which is too high would result in holdbacks, a revenue projection which is too low can force changes which cause unnecessary hardship and damage the infrastructure of community services for people with disabilities.
The Governor’s budget singles out Medicaid for the largest cut to any state agency in his budget (5% compared to an average of 2.2%).  A more equitable distribution of cuts would relieve some of the shortfall in Medicaid.

How Optional Medicaid Services Save Idaho Taxpayers Money

By DRI

How Optional Medicaid Services Save Idaho Taxpayers Money.
Medicaid is a state and federal program created in 1965 which provides federal funding for medical care for people who cannot afford it, and a range of services for poor people with disabilities which allow them to live safely in their homes. The State of Idaho provides about 30% of the cost of this care and the federal government provides about 70% of the cost. For the last three fiscal years the federal share was increased to about 80% due to a provision in the American Recovery and Reinvestment Act (ARRA).  In FY 2012 the federal share will gradually return to about 70%.
To participate in Medicaid, Idaho must provide certain covered services which are federally mandated. Another set of services are “optional” under the federal statute.  These “optional” services were added to the federal program, mostly, as ways to save the states money and to provide federal financial assistance for services which states were providing without federal matching funds. Whenever Idaho has chosen to cover optional Medicaid services, it has been done for the purpose of reducing costs in mandatory services or to obtain federal matching funds for services previously paid for with state dollars. 
“Optional Services” include lower cost alternatives to mandatory services.
 Many optional services are lower cost services which reduce the use of higher cost, mandatory services. For example nurse practitioner services and licensed professional services such as podiatrists, psychologists, and nurse anesthetists are “optional” but reduce the use of higher cost, mandatory physician services.  Similarly, optional Home and Community Based Services (HCBS) replace more expensive mandatory nursing home services.
 Community based mental health rehabilitation services, like psychosocial rehabilitation (PSR), have been proven to reduce the frequency of involuntary hospitalization in state hospitals which, for most adults, is paid for with 100% state funds and costs the state about $530.00 per person per day. However two of the units at Idaho State Hospital South (the elderly and adolescent units) are funded by 70% federal matching funds because they come under “optional” Medicaid services.
Intermediate Care Facilities for people with Intellectual Disabilities (ICF/ID, formerly ICF/MR) services are optional, but through this Medicaid service the federal government pays for 70% of the $22,000,000 per year cost of Idaho State School and Hospital (ISSH) including the payments on the bond issued to build the new buildings on campus.  In addition to the Federal funding for ISSH, the existence of private ICFs/ID, and Home and Community Based Waiver Services for people with developmental disabilities (HCBS/DD) has allowed Idaho to reduce the average population at the state institution from about 1,000 people  in 1960 to about 68 today. The average cost of care at ISSH is now about $700 per person per day while the cost in community ICF/IDs is about $240 per day, and the cost of care in the community with HCBS is about $129 per day.  Since the introduction of HCBS/DD, the population at ISSH has decreased significantly and the population in private ICF/IDs has been held steady in spite of a significant increase in the number of people with developmental disabilities who are eligible for institutional care in Idaho.  By serving these people in the HCBS/DD waiver, Idaho has saved huge sums of money over the years. 
HCBS services for people who would otherwise need mandatory nursing home services (the HCBS/A&D waiver) is an even bigger savings. This waiver saves Idaho taxpayers money in two ways. First it saves millions by providing less expensive home based care.  Currently, there are 7,813 adults on the HCBS/ A&D waiver with an average per person, per month cost of $1,561 while the average per person per month cost for nursing facility care was $5,349, saving Idaho about $29,600,000 per month or about $355, 000,000 per year if all eligible people moved to nursing facilities.  Of course some people would try to get by as long as possible without entering nursing homes.  For some of these people that attempt would end in an illness or injury, an expensive hospitalization, or an earlier admission to a nursing home.  HCBS/A&D services prevent these events and keep people out of nursing homes entirely or at least for a much longer period of time. In addition to keeping people in their homes, HCBS/A&D services have saved the state millions in reduced Aid to the Aged Blind and Disabled (AABD) payments. Prior to the HCBS/A&D waiver Idaho paid the cost of residential and assisted living homes for people without the financial resources to support themselves. The AABD program is mandated for states participating in Medicaid. People without income who lived in group residential care facilities, now mostly called assisted living facilities, paid their bill with the state AABD payments they received.  These payments come directly from the state general fund without federal match.  With the HCBS/A&D waiver, much of the cost of care for these people is now shared by the federal government.
The Americans with Disabilities Act mandates community services.
Even though many community based services for people with disabilities are considered optional under the federal Medicaid statute, compliance with the Americans with Disabilities Act (42 USC §12101-12103) is not optional.  Since the U. S. Supreme Court decision in Olmstead v. L.C. and E.W., 527 U.S. 581 (1999),it has been clear that state’s cannot design their Medicaid programs in a manner which unnecessarily forces people with disabilities into institutional settings in order to receive Medicaid services. The Supreme Court specifically mentioned the HCBS waivers as the method for insuring that n the state’s Medicaid system has adequate alternatives to institutional services.  While states have considerable flexibility in how they configure their HCBS services, elimination of community based alternatives violates the requirements of the Americans with Disabilities Act. Many states have faced Olmstead based lawsuits when they have tried to cut back their community based services. These states have been forced to maintain the services and pay for the costs of the lawsuits.
Children’s services are mandated by EPSDT.
Although the federal Medicaid statutes label some services “optional” they are not optional for children who have a medical need for the services. Under the federal Medicaid law, “Early and Periodic Screening, Diagnosis and Treatment” for children is a mandatory service.  The federal law requires states to cover any “treatments” identified in an EPSDT appointment.  Under this provision, any “optional” Medicaid service becomes mandatory for a child when it is considered “medically necessary”.  Idaho Medicaid is mandated to provide the whole range of optional services to qualifying children under the age of 21.
Summary
Eliminating “optional” Medicaid services will increase Medicaid costs by driving people to higher cost mandatory services or by losing federal matching funds for services the state would need to provide with general fund dollars.

Children’s DD Services II-School Services

By DRI


Public Policy Watch
Children’s DD Services II-School Services
The recently proposed Medicaid rules for Children’s Developmental Disability (DD) services will apparently have very serious consequences for schools and students who have been receiving developmental therapy through their school districts. My understanding from the Department of Health and Welfare is that Medicaid will no longer allow schools to bill Medicaid for developmental therapy or the new “intervention” service, if the rules are adopted.
When Schools bill Idaho Medicaid for developmental therapy, the school district pays the state’s share of the costs (typically about 30%, though it has been higher for the last two years because of federal stimulus money). The federal share of the cost is about 70%, which is of course, a significant benefit for the schools. The rule change will shut off this federal funding stream without any benefit to the schools or to the state Medicaid costs. I do not believe that Medicaid payment for physical, occupational or speech therapy in schools will be affected. Schools in their current financial situation will not be enthusiastic about stepping up and using their own funds to provide these services. This will likely lead to conflicts with parents, increased administrative hearings and reduced services for children in special education. I do not believe that schools are fully aware of the impact this change will have on their programs and on their staffing levels. I will acknowledge that school based Medicaid services have not always been used in a way that is most beneficial to the children. However, this unplanned (on the part of schools) loss of federal funds will surely do more harm than good, and as usual children with disabilities will suffer the consequences.