February 12, 2015

Psychosocial Rehabilitation and the Idaho Medicaid Managed Care Contract

Implementation of Idaho’s Medicaid Managed Mental Health Contract with Optum Health, Inc. has had a rocky start and has resulted in some major changes in the delivery of Medicaid covered mental health services in Idaho. There have been problems encountered by mental health service providers in processing and obtaining authorizations for services, but this article will not address those issues. I intend to focus on the problems being experienced by Idahoans with serious mental illness (SMI) and children with serious emotional disturbance (SED), in obtaining community based mental health services and supports. Most of the controversy revolves around authorization of Community Based Rehabilitation Services (CBRS).

Confusing Terminology
For many years, Idaho Medicaid provided a service called Psychosocial Rehabilitation (PSR). This service consisted of a mental health worker meeting with a person with SPMI, or SED and teaching them skills related to surviving in the real world while coping with a serious mental illness. PSR workers helped their clients recognize recurring symptoms of their illness, stick to their treatment plans, evaluate the effectiveness of their medications and their side effects, cope with stressors in their lives (family crises, evictions, expulsions, deaths of loved ones, encounters with the police, etc.), and build independent living skills (budgeting, shopping, getting or keeping a job, dealing with chronic health conditions, etc.). The strict rule definition of PSR limits it to skill building activities, but when a PSR worker found a client without food, behind in their rent, out of medications, afraid to leave the house to go to the doctor appointment (or whatever), they often just helped the person deal with the crisis. They might take them to the grocery store to get some staples, coach them through a call to the landlord about the rent, drive them to the doctor appointment, or help them understand their diabetes diet restrictions. If they find them in a crisis, they might take them to the emergency department of the hospital. Bureaucrats may argue about whether all of these activities fall under the definition of PSR, but they are all needed if we hope for people with SPMI/SED to survive in the community and stay out of hospitals, jails, prison, juvenile justice system, or homeless shelters.

Optum doesn’t use the term Psychosocial Rehabilitation. They offer an identical service called Community Based Rehabilitation Services (CBRS). The Psychiatric Rehabilitation Association (PRA) uses the term Psychiatric Rehabilitation to cover this type of service. The American Psychiatric Association includes Psychosocial services in a larger category of "Psychotherapeutic Interventions" which include Psychosocial rehabilitation, and in-home and community based services such as "Psychoeducational services" and others not named in the treatment guidelines (see e.g., APA Treatment Guide –Bipolar Disorder p. 52).

Services for children are equally confusing. In addition to the terms used above, there are a host of packaged services and approaches which may include some or all of the services described as PSR, or CBRS. "Wrap Around Services" and "Intensive In-home services" are two phrases used by the Substance Abuse and Mental Health Services Administration (SAMHSA) of the U. S. Department of Health and Human Services, to describe evidence based approaches which include services that Optum calls CBRS, along with other services. In addition, there is great overlap between other services such as Assertive Community Treatment teams (ACT teams) and CBRS even though it also includes some things that a CBRS client would not receive. While these words and phrases do not always describe exactly the same things, they have many common features and they significantly overlap each other. A person receiving any one of these services might not be able to tell the difference between one and another. In this article, I will use Optum’s term, Community Based Rehabilitation Services (CBRS), unless the context requires something else.

What is Optum doing?

Since the implementation of Optum’s contract some patterns have emerged.

  1. CBRS services to children have been significantly reduced.

  2. CBRS Services to people with both a mental illness and an intellectual disability have been significantly reduced.

  3. CBRS services have been reduced for people with diagnoses other than Schizophrenia (although Dr. Berlant has acknowledged that there is evidence that CBRS is effective for a range of diagnoses).

  4. CBRS services have been reduced in frequency and duration for many recipients and authorizations for CBRS are very short term.

In general the reason for reducing or denying CBRS is that it is not "medically necessary" according to the Optum care levels which are said to be based on the treatment guidelines of the American Psychiatric Association (APA) or the practice parameters of the American Academy of Child and Adolescent Psychiatry(AACAP), or SAMHSA. You will not find "CBRS" in these guides because CBRS is a term invented by Optum to describe psychosocial rehabilitation services (PSR). Due to the confusion over terminology described above, it is more difficult to nail down the evidence for the service.

Children’s Services
Optum medical directors have declared publicly that CBRS is not an evidence based practice for children. The American Academy of Child and Adolescent Psychiatry would seem to disagree.

American Academy of Child and Adolescent Psychiatry (AACAP) Practice Parameters – Schizophrenia:
Although further studies are needed, youth with EOS (Early Onset Schizophrenia) should benefit from adjunctive psychotherapies designed to remediate morbidity and promote treatment adherence. Strategies for the patient include psychoeducation regarding the illness and treatment options, social skills training, relapse prevention, basic life skills training, and problem solving skills or strategies. Psychoeducation for the family is also indicated to increase their understanding of the illness, treatment options, and prognosis and to develop strategies to cope with the patient’s symptoms.( Journal of the American Academy of Child & Adolescent Psychiatry, Volume 52, Number 9- September 2013. p. 986, note: this parameter is being revised)

AACAP – Treatment Guidelines – Bipolar

Bipolar disorder significantly affects social, family, academic, and developmental functioning. Therefore, in addition to efforts directed at reducing further episodes, psychosocial interventions are needed to address the myriad of disruptions that emerge in the wake of the disorder. Efforts to enhance family and social relationships, including therapies directed at communication and problem-solving skills, are likely to be helpful.(p.120)

Therefore, a comprehensive, multimodal treatment approach that combines psychopharmacology with adjunctive psychosocial therapies is almost always indicated for early onset bipolar disorder. Although medications help with the core symptoms of the illness, they do not necessarily address the associated functional and developmental impairments and the frequent need for support and skills building.(p.120)

The Substance Abuse and Mental Health Services Administration (SAMHSA) and the Center for Medicaid Services (CMS) in the U.S. Department of Health and Human Services have issued a joint information bulletin with a list of evidence based psychosocial service models for children with SED. The bulletin concludes:
While the core benefit package for children and youth with significant mental health conditions offered by these two programs included traditional services, such as individual therapy, family therapy, and medication management, the experience of the CMHI and the PRTF demonstration showed that including a number of other home and community-based services significantly enhanced the positive outcomes for children and youth. These services include intensive care coordination (often called wraparound service planning/facilitation), family and youth peer support services, intensive in-home services, respite care, mobile crisis response and stabilization.

The only service in the Optum array which approaches or incorporates elements of these SAMHSA/CMS recommended services is CBRS.

The Psychiatric Rehabilitation Association (PRA) is the national group which Optum and Idaho Medicaid use to certify CBRS providers in Idaho. PRA offers a specialized certificate in Psychiatric Rehabilitation for Children (http://www.psychrehabassociation.org/practitioner-training-continuing-education/children%E2%80%99s-certificate-psychiatric-rehabilitation-courses ). It would seem clear that these recognized experts consider CBRS for children to be evidence based practice also. And if there is any lingering doubt that Children’s Psychosocial Rehabilitation as practiced under Idaho Medicaid is evidence based and provides an objective and measurable benefit, it has been dispelled by the research published in the peer reviewed journal article "Preliminary Evaluation of Children’s Psychosocial Rehabilitation for Youth With Serious Emotional Disturbance" Research on Social Work Practice, Vol. 19 No. 1, January 2009 p.5-18. A study conducted in Idaho by Nathaniel J. Williams. The study showed "Participants improved significantly in psychosocial functioning and psychological symptoms, with effect sizes ranging from large to small. Improvements were clinically significant for 78% of participants" (p.1) and "Of the participants, 78% exhibited clinically significant improvement in their overall functioning across an average treatment time of 13 months. Participants’ improvement on the CAFAS/PECFAS was statistically significant and reflected a large effect size. Reductions in the number of severe subscales were similarly robust. Finer grained analyses of the CAFAS/PECFAS subscales revealed that participants experienced statistically significant improvements in functioning and psychological symptoms."

Mental Illness and Intellectual Disability
Mental Health diagnoses are often ignored in people who have an intellectual disability (ID, formerly called mental retardation, MR) and as a result they do not receive appropriate mental health services. Nevertheless, studies show that mental illness is very common in people with ID. This applies to both children and adults. The AACAP practice parameters say:
Mental disorders occur more commonly in persons with MR than in the general population. However, the disorders themselves are essentially the same. Clinical presentations can be modified by poor language skills and by life circumstances, so a diagnosis might hinge more heavily on observable behavioral symptoms. (p.1)… The principles of psychiatric treatment are the same as for persons without MR, but modification of techniques may be necessary according to the individual patient's developmental level, especially communication skills. Medical, habilitative, and educational interventions should be coordinated within an overall treatment program.(p.8S)

Robert Lieberman in "Recovery from Disability: the Manual for Psychiatric Rehabilitation" explicitly includes Intellectual disabilities among those who will benefit from PSR/CBRS. (p.12). I have found nothing in the literature which says that CBRS is ineffective with people who have an intellectual disability. Many dually diagnosed Idahoans can attest to the benefits they received from PSR/CBRS and to the harm suffered when it was withdrawn too early. I have found many sources which say that PSR/CBRS providers need additional training and expertise to properly provide mental health services to people with ID, and sources which say that mental health systems improperly exclude people with ID from mental health services. However, such exclusion would be impermissible under the Americans with Disabilities Act and other anti-discrimination laws.

Diagnoses Other Than Schizophrenia
The APA guidelines for Bipolar Disorder say:
"When the functional impairments of bipolar disorder are severe and persistent, other services may be necessary, such as case management, assertive community treatment, psychosocial rehabilitation, and supported employment. These approaches, which have traditionally been studied in patients with schizophrenia, also show effectiveness for certain individuals with bipolar disorder…Nevertheless, the weight of the evidence suggests that patients with bipolar disorder are likely to gain some additional benefit during the maintenance phase from a concomitant psychosocial intervention",(APA Treatment Guidelines, p.52)"

It is important to note that the APA does not have guidelines for all major mental illness diagnoses. Therefore, it would be wrong to assume that the APA has any position on the appropriateness of CBRS for other diagnostic categories. Indeed, the guidelines themselves state:
These parameters of practice should be considered guidelines only. Adherence to them will not ensure a successful outcome for every individual, nor should they be interpreted as including all proper methods of care or excluding other acceptable methods of care aimed at the same results. The ultimate recommendation regarding a particular clinical procedure or treatment plan must be made by the psychiatrist in light of the clinical data, the psychiatric evaluation, and the diagnostic and treatment options available. (emphasis added, p.iv).

The Performance Standards for Psychiatric Rehabilitation of the Community Care Behavioral Health Organization , (2008 revision) use this standard:
General Description of Psychiatric Rehabilitation
Psychiatric Rehabilitation services are designed to address the needs of individuals with a history of severe mental illness as evidenced by a diagnosis of schizophrenia, major mood disorder, psychotic disorder not otherwise specified, schizoaffective disorder or borderline personality disorder of the DSM IV classification. The person receiving services must also have a moderate to severe functional impairment as a result of mental illness.(p.2)

Robert Paul Lieberman, M.D., Professor of Psychiatry UCLA Medical School (the founder of the field of evidence based psychiatric rehabilitation and the author of Recovery from Disability: the Manual for Psychiatric Rehabilitation) says:

The term "mental disability" is preferentially used to delineate the disorders afflicting patients who are appropriate recipients of rehabilitation… Psychiatric rehabilitation can benefit all those whose psychiatric disabilities endure beyond a relatively brief treatment of symptoms…Several terms have been used in the literature to delimit the population of the mentally disabled. The most frequent are terms such as "severely mentally ill", "chronic mental patients", and "seriously and persistently mentally ill"… A large number of individuals with disparate mental disorders listed here are often deemed disabled by the various criteria delineated above:
      • Schizophrenia

      • Bipolar disorder

      • Major Depression and disthymia

      • Obsessive-compulsive disorder

      • Social phobia

      • Panic and agoraphobia

      • Posttraumatic stress disorder

      • Some personality disorders such as borderline, schizotypal and schizoid

      • Developmental disorders such as pervasive developmental disorder or Down Syndrome (Recovery from Disability, p.9-11)

In my own search, I did not find any source which suggested that PSR/CBRS is only effective for people with schizophrenia. Dr. Berlant has acknowledged that CBRS may be appropriate for many people with Intellectual Disabilities depending on the nature and extent of the functional limitations involved. Optum spokespersons have publicly stated that there is no I.Q. cutoff for CBRS. In any case, the broad consensus is that psychiatric rehabilitation by whatever name, is generally indicated for anyone with a severe and persistent mental illness resulting in disability which persists beyond the period of acute treatment. CBRS is the only service in the Optum plan which can provide "psychosocial rehabilitation" or other ongoing psychosocial services. In fact, Optum does not offer any other psychosocial services which are evidence based such as, assertive community treatment, psycho-educational services, "wrap around" services or intensive in-home services. With the exception of case management, there is nothing to fill the gap between clinic services and hospitalization. For people who have severe and persistent mental illness, this is a serious shortcoming.


Proper use of Treatment Guides and Evidence Based practices
It is important to note that the APA practice guidelines do not cover all evidence based practices and are not properly used to refuse coverage for a treatment or service which is recommended by a treatment team for a particular person. The APA only has practice guidelines for 12 mental health diagnoses. They don’t include Shizoaffective, or Schizotypal disorders, for example. It would be wrong to assume that the lack of an APA guideline constitutes a basis for finding that CBRS is not evidence based for diagnoses which do not have guidelines. The APA says of the guidelines:
The guidelines linked on this page, excluding Major Depressive Disorder, are more than 5 years old and have not yet been updated to ensure that they reflect current knowledge and practice. In accordance with national standards, including those of the Agency for Healthcare Research and Quality's National Guideline Clearinghouse, these guidelines can no longer be assumed to be current.

Since only one guideline is current, the failure of the guidelines to take PSR/CBRS into account should not be determinative of whether it is medically necessary or evidence based. Perhaps more importantly the APA says of each guideline:
The American Psychiatric Association (APA) Practice Guidelines are not intended to be construed or to serve as a standard of medical care. Standards of medical care are determined on the basis of all clinical data available for an individual patient and are subject to change as scientific knowledge and technology advance and practice patterns evolve. These parameters of practice should be considered guidelines only. Adherence to them will not ensure a successful outcome for every individual, nor should they be interpreted as including all proper methods of care or excluding other acceptable methods of care aimed at the same results. The ultimate judgment regarding a particular clinical procedure or treatment plan must be made by the psychiatrist in light of the clinical data presented by the patient and the diagnostic and treatment options available.

Similarly the AACAP declares:"These parameters are not intended to define the standard of care, nor should they be deemed inclusive of all proper methods of care or exclusive of other methods of care directed at obtaining the desired results."

It is simply improper to use the guidelines as a basis to deny a treatment when the treatment is benefitting a patient based on the assessment of the treating psychiatrist and other treating clinicians.

Idaho has a long history of providing psychiatric rehabilitation services to children, people with intellectual disabilities, and people with a variety of psychiatric diagnoses. Although these services have occasionally been of poor quality, overall Idahoans have benefitted greatly from them and many have suffered from their loss. Close individual review of the actual benefits of CBRS to any individual and professional scrutiny of the value of the service are desirable and responsible. Categorical denial of services to individuals who benefit from the service and who will be harmed by the loss of the service, serves no purpose and can cause great harm.

Jim Baugh

December 8, 2014

Idaho Medicaid Redesign and People with Disabilities: "Option 3.5"

The Governor’s Work Group on Medicaid Redesign made a new recommendation on November 14th, 2014 to support a “hybrid” version of Medicaid expansion. They called this recommendation “Option 3.5”. It provides Medicaid eligibility for qualifying families below the Federal Poverty Level (FPL), and uses Medicaid funding to purchase coverage on the state insurance exchange for qualifying families between 100% and 138% of the FPL. Implementing this recommendation, or any other option for Medicaid expansion, will be of significant benefit to many Idahoans with disabilities.

Contrary to popular opinion, not all Idahoans with disabilities, who are living in poverty, are eligible for Medicaid. Two large groups are currently excluded. Of the roughly 41,000 Idahoans who have a serious and persistent mental illness (SPMI), only about 9,000 adults are currently eligible for Medicaid. About 10,000 more get 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 those people whose mental illness is disabling and recurring. Providing access to health care coverage for families up to 138% of FPL would include almost all of these people. Medicaid redesign would provide federal funding for the care and treatment they need and relieve the burden on county indigent funds and state general funds for both the Catastrophic Health Care Fund, and the Division of Behavioral Health programs. Currently, most Idahoans with SPMI have no coverage for mental health treatment, or for the very expensive prescription drugs needed to control their symptoms.

People who acquire disabilities after a period of employment, and are unable to work can qualify for Social Security Disability benefits. However, federal law prevents these people from obtaining Medicare coverage for two years after the onset of their disability. If their Social Security benefits exceed $721/month, they are also excluded from Medicaid coverage. At any given time, there are tens of thousands of Idahoans with disabilities in this waiting period. A recent study of Idaho county indigent program claims conducted by Dr. Douglas Dammrose, revealed that 42% of the claimants fell into this category (http://www.healthandwelfare.idaho.gov/Portals/0/Medical/MoreInformation/08-14-2014%20Medicaid%20Redesign-Idaho%20Doug%20Dammrose.pdf ). 

There are other people with disabilities, including many veterans, who fall into this coverage gap due to individual circumstances. All of them would benefit from access to affordable health care coverage. Option 3.5” could have different effects depending on its implementation. Some plans on the exchange have very little coverage for mental health treatment. Some of the most effective treatments for many people with severe and persistent mental illness are not included in exchange based plans. People with SPMI need a robust benefits package to get adequate coverage and to maximize savings from state general fund programs. This can be provided through Medicaid or through “wrap around” coverage, but it is necessary to address the needs of people with SPMI. 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. These services are typically covered under Medicaid but not under exchange policies. Idaho must insure that people with particular health care issues caused by disabilities, have access to regular Medicaid coverage or robust “wrap around” supplemental policies, to meet these needs and prevent higher cost services.


Any Medicaid redesign option, which provides access to affordable health care for people in the “coverage gap”, will benefit Idahoans with disabilities and state and county budgets. Option 3.5 will be most effective for people with serious and persistent mental illness and other disabilities if it includes regular Medicaid coverage for those who need services that are not covered by state insurance exchange policies.

November 3, 2014

DRI Comments on Home and Community Based Services Transition Plan


Comments of DisAbility Rights Idaho

Idaho Medicaid Transition Plan for Compliance with CMS/HCBS Community Integration Regulations




DisAbility Rights Idaho (DRI) is the Protection and Advocacy Agency for the State of Idaho under 42 USC §§ 15041-15045, 42 U.S.C.A. §§ 10801-10807, 10821-10827, and 29 USC § 794e. We are deeply concerned with the implementation of these Federal regulations and with the rights of people with disabilities generally.

Insuring that Idahoans with disabilities have full access to their communities, and control over their lives and homes, is a high priority for DRI. We believe that the approach to this transition should be much broader than the review of current state facility rules. Many Medicaid rules, practices and payment rates have a profound effect on whether people receiving HCBS services can achieve community integration and self determination within their own homes.


Recommendation 1.      The comment process being used by the Department of Health and Welfare (IDHW) is very technical and generally inaccessible to many consumers and stakeholders. The series of webinars have consisted of a recitation of the departments conclusions that certain rules either do or do not have provisions which relate to the new federal regulations. Without finding and reviewing the rules involved, commenters cannot determine whether they agree with the findings or not. The plan consists only of statements to address in some unspecified way the areas of current rules identified as “gaps”. Consumers, family members and even some providers cannot make meaningful comments on such a plan. DRI concurs with the recommendation of the Idaho Council on Developmental Disabilities (ICDD) on improving the comment process.


Recommendation 2.      The transition plan should contain more than a statement of identified gaps in Idaho Medicaid rules, and the process should include more than a review of the rules’ text. Determining whether Idaho Medicaid complies with the community integration mandate must explore actual conditions and experience of participants in HCBS settings. It must also review rate structures to determine whether they encourage or prevent integrated settings and practices, and how other factors such as cost sharing may impede access to community activities compared to people who are not HCBS recipients.


Recommendation 3.      CMS has not required states to submit a transition plan on how the state conducts “Person Centered Planning” (PCP). However, the PCP process is a key part of the community integration process and the new CMS regulations include changes to the language describing requirements for PCP. It will not be possible for Idaho to comply with the HCBS rules without proper implementation of changes to PCP processes. In order to be in compliance with the CMS regulations Idaho will need to change the person centered planning process in several HCBS programs. This issue is not addressed in the plan.


Recommendation 4.      Idaho Medicaid imposes limits on the cost of services for each individual in HCBS waivers and in Adult DD services under section 1915(i) of the Social Security Act. These limits are called individual budgets. The budgets set upper limits on the total cost of services for each individual. The budgets are determined differently in each waiver. However, in every case the budgets are set in a process which is prior to, and independent of, the person centered planning process. CMS rules address individual budgets only in the context of self directed services, but the budgets have the potential to affect each person’s ability to participate in community integrated activities. People whose budgets force them to access only center based or group services do not have the ability to choose individual or community integrated activities to the same degree as people who are not dependent on HCBS services. This issue is not addressed by the transition plan.


Recommendation 5.      Reimbursement rates for services can create unintended barriers to community integration.  “Blended rates” for Section 1915(i) services which pay the same rate for individual and group services creates a strong incentive to provide services in groups or in segregated centers. Center based and group services can have the effect of limiting individual choices and preventing participation in community integrated settings. For some individuals, the combination of individual budgets and rate incentives can effectively require them to spend all or most of their day in segregated, or disability group activities. The same effect can be seen in HCBS DD waiver models when individual budget limitations force a person to utilize mostly or only group based services. The transition plan does not address these issues.


Recommendation 6.      Medicaid Transportation can have a huge affect on a person’s ability to make personal choices about the services they receive. The current contract with AMR and its implementation restrict a participant’s choice of provider and the place where the service is received by limiting transportation to the closest Medicaid provider site to offer the service. This may pose another hidden barrier to participant choice and community integration, in violation of the CMS regulations. The issue is not addressed in the plan.


Recommendation 7.      Recent activities of the ICDD in surveying people receiving HCBS/DD services have revealed widespread practices by Medicaid providers which restrict individual choice and freedom. These include restrictions on access to food, and allowing participants to receive phone calls or respond to surveys. Even when current Medicaid rules might prohibit the restrictions, such practices persist and may be commonplace. The transition plan should include a plan to investigate the prevalence of such practices and the development of proper oversight and enforcement. (see also comments by ICDD)


Recommendation 8.      The CMS rules allow person centered planning processes to authorize exceptions to the new rules in settings which are provider owned or controlled, such as Certified Family Homes and Residential and Assisted Living facilities. The rules do not allow for a similar exception in non-provider owned settings such as Supported Living or My Voice My Choice. Idaho has made good use of these community integrated models for people with significant disabilities and significant behavioral issues. In Idaho’s system these HCBS models serve participants who could not be served well in congregate care settings. The success of these placements sometimes depends on the ability of the provider to restrict certain activities, and choices, when those choices pose a significant threat to the safety of the participant, their roommates, or members of the public. The effect of these CMS rules could be to force these participants into less integrated and less appropriate congregate care facilities. Idaho needs to explore the creation of one or more care models which can recreate the advantageous community integration of the current supported living model, while allowing for legitimate safety based concerns. These settings could include allowing provider leasing or ownership of a residence in a 2 or 3 bed community residence which can restrict unsafe activities, or application for a “Community Safety” waiver model under a non-HCBS authority such as section 1115 of the Social Security Act. Safeguards must be developed to insure that these models are not used to restrict the choices of people who do not pose a legitimate and significant safety risk.


Recommendation 9.      Cost sharing provisions of the HCBS/A&D waiver can also seriously impair the choices of participants as expressed in this comment we received from one of our clients:

Under current law the home that I live in and the lift equipped van I own are not considered a resource for Medicaid. The problem with Idaho's personal needs allowance (PNA) is that it does not allow a participant to use his own income to repair, maintain, insure or even sometimes use the home or vehicle.

I live in my own home but do not drive and require a caregiver to drive me to church, the movies, my son's band concert, and other activities in the greater community. I was told by a previous home healthcare provider that these type caregiver hours were not included in my UAI. I was required to private pay for these caregiver hours. I think I should have the same rights as a Medicaid participant living in a certified family home or a residential assisted living facility.

I don't believe I'm allowed control over how my resources are spent to the same extent that a non-HCBS person living in the greater community has over their resources.

I feel like I am being institutionalized in my own home.


Some of these recommendations will also apply to non-residential settings and service design should consider both residential and non-residential services.


Submitted by DisAbility Rights Idaho

Contact: James R. Baugh, Executive Director

4477 Emerald St., Ste. B-100   Boise, ID 83706

Ph: 208-336-5353,  e-mail:  jbaugh@disabilityrightsidaho.org

May 19, 2014

Supported Employment Opportunities Open Up for People with Disabilities in Idaho: A Court Decision, a State Law Change, and a Little Known Opportunity

Opportunities for Medicaid funded job training and support services are opening up in the next few weeks. It is important for people to know how to get access to them. Community Supported Employment (CSE) is a Medicaid Home and Community Based Waiver service (HCBS). Adults who qualify for either the Developmental Disability (DD) waiver or the “Aged and Disabled” (A&D) waiver may be able to benefit from the service. CSE provides intense, usually one to one, on the job training and support from a “job coach”.

1.   The Court Decision:
The Idaho Federal District Court has certified a class action lawsuit and extended the benefits of a court order in that lawsuit to all adults on the Medicaid DD waiver. The order restores each person’s DD services budget to the highest level it has been since July 1, 2011. The Department of Health and Welfare has sent letters to everyone letting them know what their budget is for this year under the court order. For many people this budget is considerably higher than it was before the decision. People with higher budgets can now change their service plans to add services, including CSE. Because many people’s budgets were cut in 2011 and later years, some people lost CSE services or had to cut their hours of work. Some people may now have enough room in their budgets to access CSE for the first time. The restored budgets will allow them to use CSE services to get a job or increase the hours they are currently working. Participants, Service Coordinators, and Plan Developers should consider whether to take advantage of this opportunity.
2.   The State Law Change:
The Idaho Legislature passed a bill (H476) which will permit people with developmental disabilities to request an increase in their services budget if it is needed to obtain or retain employment. It has always been difficult to include CSE services in a DD services budget because the hourly cost of CSE is higher than many other DD services, and employment services have been left out of people’s plans to leave money for services more directly related to health or safety. Starting on July 1, 2014, participants can request an increase in their budget, if it is needed to pay for CSE. This is done through the “exception review process”. The new CSE rules will be available for public comment in June, 2014.  This exception review process is not necessary if your current DD service budget (which might be higher now due to the court decision) is large enough to pay for the CSE services you need. To take advantage of this opportunity, you will need to modify your plan to add the CSE service and to make adjustments to your other DD services, if needed.
3.   CSE services in the A&D Waiver:
Although very few people have used them, CSE services are also offered under the “Aged and Disabled” (A&D) waiver. CSE services are usually thought of as a service for people with developmental disabilities (DD). However, job coaching may be needed and helpful for people with other types of disabilities. If you participate in the A&D waiver and you want to get a job, consider whether CSE might be just what you need.
Waiver participants who want to add CSE services to their individual service plans should contact their Targeted Service Coordinator, or a CSE provider to start the process.

Most people with disabilities would welcome the opportunity to be employed, if only they could get the supports, specialized training and job accommodations they need. In the next few weeks there will be some new opportunities for people to get that kind of help.

April 22, 2014

Shocking Behavioral Therapy - The Safety and Effectiveness of Using Electric Shock Devices for Behavior Management

  I am including the Comments form The National Disability Rights Network on the safety and effectiveness of electroshock devices as a supposed "treatment" for autism and other developmental disabilities.  Please submit a comment if you have experience with this awful practice.

April 14, 2014  

Avena Russell
Center for Devices and Radiological Health
Food and Drug Administration
10903 New Hampshire Ave., Bldg. 66, Rm. 1535
Silver Spring MD 20993-0002
Re: Written Testimony for Neurological Devices Panel of the FDA Medical Devices Advisory Committee, Docket No. FDA-2014-N-0238, Schedule for public meeting on April 24, 2014 
Dear Ms. Russell,
The National Disability Rights Network (NDRN) appreciates having the opportunity to comment in advance of the Neurological Devices Panel of the Medical Devices Advisory Committee meeting later this month to examine the safety and effectiveness of aversive conditioning devices that use a noxious electrical stimulus.  

NDRN is the national membership association for the Protection & Advocacy (P&A) agencies / Client Assistance Programs (CAP) that provide legally-based advocacy services to persons with disabilities in every state, the District of Columbia, and U.S. territories. NDRN promotes a society where people with disabilities have equality of opportunity and are able to participate fully in community life by exercising informed choice and self-determination. For over 30 years, the P&A / CAP Network has been mandated by Congress, to protect the civil rights of individuals with disabilities of any age and in any setting including schools and other types of programs providing education services and supports.  

In January 2009, NDRN documented the horrific abuses of students in our report "School is Not Supposed to Hurt: Investigative Report on Abusive Restraint and Seclusion in Schools”  (http://ndrn.org/sr/SR-Report.pdf). In two subsequent reports, and through the Protection and Advocacy agencies, NDRN continues to hear of stories across the country where children have been injured and in some cases killed as a result of restraint, seclusion and aversive interventions. 

NDRN believes the FDA should ban the use of aversive conditioning devices that are intended to administer noxious electrical stimuli to the body to modify behavior.  

Based on the available research, and the work of the P&A / CAP Network with individuals with all types of disabilities, NDRN believes that the devices are both unsafe and ineffective in meeting their intended purpose. NDRN’s position is supported by the federal government, and other non-governmental organizations, as well as the professional academic literature. From a national perspective, it is important to note the substantial evidence, that is available that shows that evidence-based positive alternatives to behavior modification, such as the use of positive behavioral interventions and supports are safe, and effective for use with students with the most significant behavioral needs.

 Furthermore, NDRN fully supports the testimony submitted by the designated Protection and Advocacy agency in the state of Massachusetts, Disability Law Center, Inc. (DLC). DLC has directly worked with individuals who have been exposed to aversive behavioral interventions, such as the aversive conditioning device used by the Judge Rotenberg Center (JRC) in Massachusetts. DLC’s testimony submitted in response to the same federal register notice clearly articulates the safety issues based on the pain inflicted by the device, the misfirings of the device, and the long-term traumatic effects.  

The only school known to use an aversive conditioning device that delivers a noxious electrical stimulus, is the device called the Graduated Electronic Decelerator (GED) used with students at the Judge Rotenberg Center (JRC) in Massachusetts. While NDRN recognizes that the focus of the FDA is on all devices, it is important to note that JRC is the only known entity known to use such a device. As stated in DLC’s testimony, the device was both developed by and is manufactured by JRC.[1] As discussed in the written testimony of DLC, at any given time, residents may be wearing up to five GEDs simultaneously, so JRC residents are unaware of when, where, why and how many times they will be shocked. Furthermore, the GED has undergone many changes, and the current device used at JRC is unapproved despite JRC representing the GED was approved and warnings from the FDA to seek either clearance or approval of the devices. 

As a national organization whose members provide legally-based advocacy services to persons with disabilities across the United States, NDRN believes it is critical that the Panel both review the expertise of medical and industry professionals on safety and effectiveness but also take into account the lived experience of students who have been subjected to the use of aversive conditioning devices, such as the GED, and the experience of former teachers who have administered the electric stimuli. DLC’s testimony chronicles the physical harm to one student:


…the burns and scars from being repeatedly shocked on her stomach. Electrodes had actually burned into her skin, and she experienced long-term loss of sensation, and numbness in the lower left leg after being shocked there. She describes feeling “searing pain all the way down to the bottom of her foot” and how she was “left with no feeling in her skin from the knee down for a year.” When electrodes were accidentally placed on students’ spines, she witnessed others being violently bent backwards.”

Also, the Panel should take into serious account the video shown in the courtroom of Andre McCollins, a JRC resident from New York who was shocked 31 times, using the weaker GED, for failure to take off his coat. The video is available at http://www.myfoxboston.com/story/17409093/graphic-video-of-teen-being-restrained-shocked-played-in-court. As the video clearly demonstrates, the use of restraints and the aversive

[1] BRI News, Winter 1991, Behavioral Research Institute, RI. (Note: The Behavioral Research Institute (BRI) changed its name to the Judge Rotenberg Center (“JRC”) in 1994.  JRC is designated by the FDA as the manufacturer of the GED.  See http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRL/rl.cfm?lid=147131&lpcd=HCB.  JRC/BRI refers to itself as the manufacturer of the GED. See “A Comparison of Long Term Decelerative Effects”, JRC Pub. No. 93-2, available at http://www.effectivetreatment.org/comp.html, noting (at p. 3) that it manufactured 100 GED units from 12/90 and 3/93.  DLC maintains that JRC engages in interstate commerce through the manufacturing process, and through the movement of students across interstate lines to attend JRC, and the use of the GED across state lines, when students are off-site.  See Barnes v. U.S., 142 F. 2d 648, 651 (9th Cir. 1944) (“Commerce so used in the statute is not confined in meaning to the actual transportation of articles across state lines, but includes the whole transaction of which such transporting is a part.”) (citations omitted).  JRC previously maintained that it was exempt from FDA jurisdiction as engaging in the “practice of medicine,” it is no longer asserting this argument or contesting FDA jurisdiction.

February 20, 2014

Community Supported Employment - H476

For Most of the twentieth century it was assumed that people with significant developmental disabilities could not be employed in regular jobs at reasonable wages. In recent decades, we have demonstrated that people with developmental disabilities can be productive and valuable employees if they have specialized training and workplace supports. Community Supported Employment (CSE) services are intense, often one to one, on the job training and workplace assistance that can create real employment opportunities. CSE is the only Medicaid funded service that promotes employment for people with disabilities. It is available to people who qualify for the Developmental Disabilities Home and Community Based Services waiver.

In Idaho, Medicaid services for adults with developmental disabilities are allocated according to individual services budgets. The amount of a person’s budget is determined by a formula. The formula uses assessment scores, medical diagnoses and other factors to predict the cost of the services a person needs.  The participant decides the types and amounts of each Medicaid service they want within the formula based budget. However, the formula does not always work. Individual circumstances and issues sometimes require that the budget be modified to meet the person’s basic needs.

In 2011 the legislature passed H260 to implement $113,000,000 in Medicaid cuts ($34,000,000 General Fund).   One of the changes limited a person’s ability to modify the budget to changes necessary to protect the person’s health or safety. Employment is not a health or safety issue. This had the unintended consequence of seriously reducing access to community supported employment (CSE). From 2011 to 2013, the number of people getting or maintaining jobs through CSE dropped from 275 to 182. I believe that the trend is continuing and there are fewer people receiving these services today.

H476 would allow people to request modification of their individual service budget if the modification is needed to obtain or maintain employment. It does not restore the statute to the language before 2011. Employment is merely added to health and safety as a basis for requesting a budget Modification. Any modification requested would still have to be reviewed and granted or denied by Medicaid case managers.

If we could instantly develop a hundred jobs for people with developmental disabilities and return the program to 2010 levels, the impact to the state general fund would be about $235,000 (see Fiscal Note). It will probably take several years to return to that level of participation.

Passing H476 will open the door to real world work opportunities for hundreds people who have no other way to experience the benefits of employment. It is also an opportunity to demonstrate to employers the benefits of hiring people with disabilities and to show them how to support and accommodate these employees.

November 15, 2013

Idaho Medicaid Redesign

Idaho Medicaid Redesign:
  Promoting Independence for People with Disabilities
Medicaid Redesign is a proposal for major changes in Idaho’s health care financing system for people who cannot afford the cost of health care, including mental health care.
There are five components to Idaho Medicaid redesign:
  1. Accept the federal Medicaid Coverage Option
  2. Add Medicaid requirements to increase consumer responsibility
  3.  Eliminate the County Indigent Health Care Programs
  4.  Eliminate the State Catastrophic Care Fund
  5.  Shift state funded Community Mental Health Care to Medicaid.
Others have documented how these changes will save about $480 Million in Idaho costs over the next 10 years, how it will ensure access to health care for low income working families in Idaho, and how it can change our publicly funded health care from costly emergency room and hospital care to less costly preventive and supportive community care (http://gov.idaho.gov/priorities/Workgroups.html).
 This paper addresses the benefits of Idaho Medicaid Redesign for Idahoans with disabilities who have no health care coverage. Contrary to popular belief, not all people with disabilities and low incomes are eligible for Medicaid. Thousands of Idahoans with disabilities and chronic illnesses have income below 138% of the Federal Poverty Level but do not currently qualify for Medicaid coverage.
Idaho’s mental health care system is broken. Idaho Medicaid Redesign is the best option for vastly improving our system without significant state general fund expenditures.
75,000 Idahoans experienced a serious mental illness in the last year. Of those people, approximately 41,000 have a persistent and recurring serious mental illness which significantly impairs their ability to function in society. About 19,000 of these Idahoans receive treatment through the Department of Health and Welfare for these illnesses each year. Only about half of them are currently covered by Medicaid. Medicaid covered patients receive preventive and supportive services from private providers in the community as well as crisis assistance when needed. The remaining 9,000 to 10,000 Idahoans receive services from Department of Health and Welfare centers funded entirely by Idaho general fund appropriations. These services are currently limited to people in serious crisis who pose a risk to themselves or others, and people receiving services through the state mental health courts. This system does not have the resources to provide rehabilitative services, or community supports to prevent relapses and crises. People with severe and persistent mental illness need these services to move toward recovery rehabilitation and independence. Medicaid Redesign would use federal funds to provide the full range of Medicaid mental health services for this population. The federal funds would cover 100% of the treatment costs for three years tapering to 90% by the year 2020. This would save Idaho about $9.7 million per year while providing for a desperately needed shift from crisis management to prevention, rehabilitation and community supports. In short, Medicaid redesign would allow Idaho to radically improve our inadequate mental health system using federal funds.
People with recent disabilities receiving Social Security Disability benefits often have no medical coverage.
When people first experience disability from an accident or an illness which prevents them from working, they can obtain Social Security Disability Benefits. Depending on the length of employment and the amount he or she has paid into the system these benefits often exceed the income level currently set for Idaho Medicaid. They will not be eligible for Medicare for two full years. Since they have lost their job due to disability they usually have no source of medical insurance coverage. Getting adequate medical care during the first two years after onset of disability can be crucial to future health, rehabilitation and recovery. Medicaid Redesign would provide federally funded medical coverage for this two year gap. Access to appropriate medical care during this interval is an essential part of rehabilitation and a return to independence and self sufficiency for many people.
People with disabilities due to chronic health problems need Medicaid coverage to avoid deterioration and possible institutionalization.
People with chronic health problems and disabilities are more likely to have lower incomes because of the limitations of their condition. Many people in households below 138% of the federal poverty level are in great need of preventive and ongoing medical care. These people in particular will benefit from Medicaid redesign by getting early and ongoing care, instead of waiting until their condition requires acute or emergency care. The state and counties benefit from the lower costs of care as well. Unlike most private insurance, Medicaid covers the cost of long term care. Long term care includes both institutional care in facilities like nursing homes and personal assistance services. Personal Assistance services are supports which help a person with a disability to perform daily tasks such as bathing, dressing, eating, and cooking when their disabilities make it impossible for them to do so without help. Medicaid community based services can delay or prevent the need for placement in long term care or nursing homes. This helps people to maintain their independence, and significantly lowers the cost of their care.
Health coverage for parents strengthens the health of families whose children have disabilities or special health care needs.
Parents’ health affects children’s health and well-being. The Institute of Medicine has reported that a parent’s poor physical or mental health contributes to a family environment that may impair the health or well-being of a child. Uninsured parents who don’t get care may be unable to work. Coverage for parents has a big impact on children.
DisAbility Rights Idaho (DRI) strongly supports the Idaho Medicaid Redesign because by filling in the gaps in coverage and making medical and mental health care available, we can greatly increase the opportunities for people with disabilities to achieve and maintain their independence, maximize opportunities for rehabilitation and recovery, and greatly improve Idaho’s mental health system using the federal funding available to Idaho.

February 14, 2013

On October 3, 2012, Idaho Department of Health and Welfare (IDHW) gave notice that it had proposed a new medical necessity definition for use in children’s cases.

If accepted by the legislature, the new definition reads as follows:

Medically necessary services for eligible Medicaid participants under the age of twenty-one (21) are health care, diagnostic services, treatment, and other measures described in Section 1905(a) of the Social Security Act (SSA) necessary to correct or ameliorate defects, physical and mental illness, and conditions discovered by the screening services as defined in Section 1905(r) of the SSA, whether or not such services are covered under the State Plan.   Services must be considered safe, effective, and meet acceptable standards of medical practice.

On July 20, 2012, Centers for Medicare and Medicaid Services (CMS), the federal agency that monitors a state’s compliance with the Medicaid program sent the IDHW two letters detailing its review of Idaho Medicaid’s Early, Periodic, Screening, Diagnostic, and Treatment (EPSDT) benefit for children under the age of 21.

As a result of this monitoring event, Idaho Medicaid was found out of compliance in four areas and specifically regarding the use of the state definition for medical necessity as applied to service requests for Medicaid eligible children under the age of 21.

Specifically, CMS wrote on page 8 of a report dated and sent to the IDHW on July 20, 2012:

Findings:  Idaho’s definition of medical necessity found in the aforementioned documents requires that “services are medically necessary if they can be reasonably calculated to prevent, diagnose, or treat conditions in the participant that endanger life, cause pain, or cause functionally significant deformity or malfunction; and there is no other equally effective course of treatment available or suitable for the participant requesting the service which is more conservative or substantially less costly.  Medically necessary services must also be of a quality that meets professionally-recognized standards of health care and must be substantiated by records including evidence of such medical necessity and quality.”  This definition of medical necessity is not consistent with federal rules and is too narrow in scope to be applied to Medicaid-eligible children.  EPSDT services include Section 1905(r)(5) of the Act requiring that “necessary heath care, diagnostic services, treatment and other measures described in Section 1905(a) to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the State plan.”  This requirement to cover all medically necessary Section 1905(a) coverable services to individuals under the age of 21 ensures that these individuals receive any services determined to be appropriate for their specific illness or condition, regardless of any limitations a state may include in the Medicaid or CHIP state plan.  Idaho must revise its definition of medical necessity in all of its publications, State rules, the Medicaid State plan (including the benchmarks), and the State’s beneficiary and provider handbooks.

Corrective Action Required:  Idaho is required to submit a CAP (Corrective Action Plan) to CMS within 90 days of this report detailing the changes that will be made, and the processes by which the State will notify providers, update the definition, and any applicable rules, and/or policies/procedures.  In addition, CMS expects the State to provide a timeline of when they will submit SPAs correcting all areas where the State’s medical necessity definition and/or limits on Medicaid services is not in compliance with federal statute and regulations.

Other findings of non-compliance in the July 20, 2012 report are as follows:

·         Informing – Idaho’s provider manuals, and Idaho’s booklet entitled “Idaho Health Plan Coverage – A Benefits Guide to Medicaid, Children’s Health Insurance Program (CHIP) and Premium Assistance” (Idaho’s primary informing material for participants) are inconsistent when explaining covered services in excess of limits, and appears to limit EPSDT services to conditions discovered only during a well-child screen;

·         Access to Services – The State’s requirement that parents facilitate the completion of the multi-page form entitled “Request for Additional Services (RAS) (EPSDT),” in order to receive prior authorization for 12 select services above the limits specified in the Medicaid State plan, burdens parents with obtaining complicated medical documentation, and has the potential to present barriers to beneficiaries under 21 years old accessing medically necessary services;

As a result of its investigation, CMS made several other statements in the July 20, 2012 report regarding children’s Medicaid services in Idaho and recommended that Idaho Medicaid:

·         Perform additional education to enrolled Medicaid providers related to both the availability of, and processes and procedures regarding how to request services  beyond limits for the under 21 population (page 3);

·         Ensure that all informational materials contain consistent language and messaging regarding service availability, limits, and prior authorization processes (page 4); and

·         Ensure that Health Connections (HC) representatives emphasize to Primary Care Physicians (PCP) that receipt of services beyond limits is not contingent upon a Medicaid/CHIP client being up-to-date on well-child checks (page 4).

On page 14 of the July 20, 2012 report, CMS found the following:

·         Findings:  The State’s Requirement that parents facilitate the completion of the multi-page form entitled “RAS (EPSDT),” in order to receive prior authorization for 12 select services provided by DDA above the limits specified in the Medicaid State plan, burdens parents with obtaining complicated medical documentation and has the potential to present barriers to children accessing medically necessary services.  States can specify the amount, duration, and scope for services in the State plan.  However, limitations cannot be based on the location of a provider (i.e., school district, outpatient community setting, etc.).  Furthermore, the State cannot set limits on a subset of providers that are qualified to provide a specific service (i.e., all physical therapists that meet the required qualifications and have signed a provider agreement as a Medicaid provider in Idaho are subject to the same rules for State plan services).

Corrective Action Required:  The State must immediately revise its RAS form so that parents are not burdened with obtaining complicated medical documentation.  Additionally, the State must submit a SPA (State Plan Amendment) or SPAs to correct the inconsistencies in the current Basic and Enhanced benefit packages where limitations are different for services based on the location of the provider.  The State must provide evidence to CMS within 90 days of this report documenting the required changes to the RAS form have been made.

Regarding limits on services and services coordination, on page 17, CMS in its July 20, 2012 report required that:

·         The State must remove and/or revise all language in published materials (IDAPA rules, provide handbooks/manuals, beneficiary information, etc.), to clarify that medically necessary services over and above Medicaid State plan limits are available for individuals under the age of 21.  Additionally, within 90 days from the date of this report, the State will provide a timeline for amending all publications.  In addition, the State must amend the provider manual to remove the service coordination limit to accurately reflect the State plan. 

·         For service coordination and mental health, there were zero requests for services beyond limits, and a high ratio of therapy requests were denied for not being submitted in advance of rendering services.  While this may indicate that service limits in Idaho are set so that very few eligible beneficiaries need additional services, CMS is concerned that it may indicate a lack of familiarity with the prior authorization limits and process.  The State should distribute information regularly in the Medicaid Provider Newsletter to ensure providers have current information regarding the prior authorization process, and that services beyond regular limits should be requested for patients under the age of 21 when the provider believes them to be necessary.

In another letter sent to the IDHW by CMS dated July 20, 2012, CMS explains in Attachment B necessary specific language revisions that must be made to IDHW Information Materials.  Specifically, the Children’s System Re-Design Frequently Asked Questions must contain:

·         Language must specify that all individuals under age 21 are eligibility (sic) for EPSDT services, even if enrolled in the adult HCBS waivers.  More clarity is needed to specify which services are Medicaid 1905(a) services, and which are HCBS services.

Attachment E of the July 20, 2012 letter addresses the Fair Hearing Process.  CMS made the following comments:

·         Services cannot have a lifetime limit of 36 months.  There is no information on how the family can appeal the decision or request a fair hearing.

If anyone is interested in receiving a copy of the final evaluation by CMS, please contact the DRI Pocatello Office.

October 4, 2012

Measuring a Person’s “Need” for Developmental Disability Services

There is a trend in some states, including Idaho, to use some combination of assessment tools to arrive at a number (usually a dollar amount) which is supposed to reflect a measurement of the person’s “need” for services.  If we assume that such needs can be adequately expressed by a number, it  would make the difficult task of allocating an individual budget for services much simpler. In fact the dream of having an objective, quantifiable measurement of a person’s need would make everything so easy, straightforward, fair, and justifiable that it is irresistible. However, like so many beautiful dreams, the only thing standing in the way of having such a measurement is reality. 
It is not hard to figure out what a person with a developmental disability needs. Any team of reasonable people who know a person well, with someone who has some professional expertise in that person’s particular disability, can usually reach a firm consensus on what the person needs. This method of person centered individual planning has been the standard for over thirty years.  Indeed, no one really questions that this is the proper way to develop a plan for developmental disability related services. However, now Idaho and other states have decided that there is better way to limit services by creating a  “budget”  for the person based on assessment scores and a weighted  formula. Then the state refuses to pay for services which exceed the budget even if the services are clearly considered “needed” by everyone who actually knows and works with the person.  Why would the formula method be better? We are told it is based on a scientific measurement of the person’s “need”, and it eliminates distortions caused by conflicts of interest and perverse incentives in the system.
To examine this idea we must have a working definition of what we mean by “need”.  Is it just enough support to keep the person out of an institution, jail, or a hospital? Is it whatever they used last year? Is it what other people with similar diagnosis and scores used last year on average?  I suggest that none of these is even close to what most of us mean by “need” for developmental disability services.  People with developmental disabilities, by clinical and legal definitions are people whose disability has caused them to fall behind their non-disabled peers in several major areas of life activities. The goal of all treatments and therapies is to improve the functional ability of the person, as much as possible, to the level experienced by their typical peers. Much of this improvement can be accomplished by adaptation and accommodation. If walking is not a reasonable goal, then independent mobility using a wheelchair may be the goal. If driving a car is not possible, then maybe learning how to use public transportation (when it is available) is a worthwhile goal. In any case the goal of developmental disability services is to develop independence in activities of daily living, and enable the person to be integrated into their community and included in the range of activities that everyone else enjoys. This usually requires some combination of skill development, adaptations and accommodations or supports. So I propose that the standard for what developmental services a person “needs” are those services which will have a meaningful positive impact on the person’s ability to achieve the highest level of independence , the highest level of integration into their communities, and the greatest opportunity to engage in typical activities. This includes services and supports which safeguard health and safety, preserve freedom from institutionalization, maximize independence and participation in typical community activities.
Is this asking too much? Consider whether a heart patient “needs” a procedure which will restore her to full physical vigor or if she only “needs” enough treatment to stay alive with severe limitations on her activities. We all consider that people “need” the treatment and therapy that brings them as close to a typical level of functioning as possible. Developmental disabilities should be treated no differently.
The term “developmental disability” is not a clinical term. It was created by an Act of Congress in 1975 (and broadened later) to cover a range of disabling conditions which share certain characteristics. They are manifested before the age of 22, and they cause significant functional impairments in different areas of life activities and interfere with development of the skills and abilities needed for independence and self sufficiency. The term includes conditions which cause intellectual disability such as Down syndrome, physical disability such as cerebral palsy, and social/behavioral disorders such as autism. It covers a vast range of conditions occurring alone, in combinations or with other chronic health problems and disabilities. So measuring the needs of people with DD is not as simple as measuring the need of people with a single diagnosis like diabetes. Since the services and supports needed by people with DD are related to their activities of daily living, independence, and integration into community life, their needs change with their individual circumstances.  A person living in Boise may need a period of one to one skill building to learn to use public transportation. A person living in Hazelton with the same level of disability may just need a ride. These individual differences may not be enough to change the mean distribution budgets of people in urban versus rural areas, but they are real nevertheless. Individual “person centered” assessment and planning teams can and always have been able to recognize these needs and suggest a reasonable plan to address them. Why are states abandoning this simple and straightforward way of determining a person’s needs in favor of formulas and budgets for people with disabilities? I will suggest a few possibilities.
Strong pressures from governors and legislators to reduce the amount and growth of Medicaid expenditures coupled with federal restraints on reducing services create a motivation to change the way “needs” are defined.  Federal statutes and regulations require states to provide the amount of services needed to accomplish the purpose of the service.  Cutting services requires a rationale which allows state agencies to reduce services while still claiming to meet the person’s “need”.
It is painful and difficult to review individual plans and find things to cut out. No one wants to be the “bad guy” and decide what services to deny. If the person has a budget and it is decided by a formula, no one is to blame. The formula cut your budget and you decide what services you want to give up in order to stay under the budget. There is no one to persuade that the budget is inadequate. Arguments are limited to proving that the budget setting process was not followed.
Formulae seem objective and scientific. “You and your family and your team thought you needed that amount of services, but we just measured your need with our formula and apparently, you don’t. You can’t argue with science.”
Pre-set budgets present a safe way to introduce self determination principles to DD services. When restrictions on the types of services and the providers of services are lifted to give people with DD choices, Medicaid agencies need some way to limit expenditures. Pre-plan, formula based budgets are one way to accomplish this.
Sometimes teams feel pressured to recommend more services than a person wants or needs because of parental concerns, conflicts of interest, or perverse incentives built in to the system.
Do formulae actually predict the needs of people with DD? 
They probably do predict a reasonable budget for some people. How many people get budgets for more than they “need”, or less than they “need”?  To answer this question we need to agree on some working definition of “need” and find a way to measure it for each individual person.  Idaho, like some other states, uses a method which calls for the data from each budget year to be compared to the previous year and to measure the degree to which certain pre-selected variables predict a variation in the individual’s budget. Medicaid uses a regression analysis method to adjust the weight given to certain variables.  The assumption of this method is that general variations in budgets are exactly equivalent to variations in individual needs. But the budgets are set by the system and variations are restricted by the budget setting method. In 2010, Idaho Medicaid dramatically increased the number of people who are assigned their formula based budgets instead of their prior year budgets. This artificially increases the apparent predictive power of the formula. At the same time, Idaho Medicaid has restricted the ways that people are allowed to appeal the decision and prove that the budget does not actually meet their needs.  If we were to test the real ability of the formula to “measure” a person’s “need” for DD services we would compare the formula budget to the actual cost of a plan of services prepared by a competent interdisciplinary team using Person Centered Planning methods. Unfortunately, our system does not allow person centered planning to take place independent of the restrictions of the formula predicted budget. A 2009 analysis of the model refers to the client’s need only in quotation marks and repeatedly describes guesses about whether prior year budgets or prior year expenditures are closer to the person’s “need”. The analysis uses statistical regression methods which exclude “outliers” to “clean” the data. These methods are sound statistical procedures for analyzing trends or central tendencies of large data sets. They do not help us to know what each individual actually needs. In fact, individuals with unusual needs (i.e. “outliers”) are treated as statistical “noise”. 
In the real world, lots of factors interfere with a person’s ability to get access to all of the authorized services. Hospitalizations, family vacations, illness, staff shortages and turnover can all reduce a person’s actual use of DD services without reflecting a reduced need for the service. When we look at these effects over the whole population, these factors (and others) will always reduce utilization of the budget for some percentage of the people participating. But it will not be the same people from year to year.  A person who has a budget which is only half of her actual “need” will still use less if her direct support staff quits and she can’t get another for two weeks. Someone looking at her expenditures will conclude that she didn’t even need the amount in her budget or she would have used it.  In part the analysis used by Medicaid in 2009 to change the model, uses this false assumption.  The effect of repeatedly applying this reasoning will work to constantly and artificially shrink the estimate of people’s needs as measured by the formula without any actual change in the needs of the participants.
The only other current check on whether budgets are meeting people’s needs is to look at “Critical Incident” reports, institutionalizations and emergency room visits. These events are important parts of evaluating the adequacy of the services but they only reveal the most spectacular failures, not chronic insufficiencies of services. People who receive less service than they need will merely continue to function at much lower levels of independence and integration than they would with a more appropriate level of services.
We need to have some consensus about what a person’s “need” for DD services is. I propose that a person’s need for DD services is:
The amount of services which has the best reasonable chance of minimizing the functional limitations caused by the person’s disabilities relative to their typically functioning peers, and the adaptations and accommodations the person needs to participate in typical integrated activities in their community.
The best way to determine that amount is an individual assessment of the person in their circumstances by a team of people which includes, the person, people who are familiar with the person and their circumstances, and at least one professional who is competent to recommend and design a person centered plan of services to meet those needs.
If we want to monitor the success of the formula, we need to measure how well the formula predicts the level of services recommended by the team in a person centered plan of services. Prior year expenditures, prior year budgets and weighted factors for diagnoses are, at their best, only correlated with a person’s needs. The best measurement of anything is direct observation.  In science, we only rely on indirect measurements (i.e. measurements of other things which are correlated with the thing we are trying to measure) when direct observation is impossible.
We need to ask each person centered planning team to develop a plan based on the above definition of “need”, determine the cost of the plan and document it. We need to carefully consider whether the plan is influenced by family overprotection, conflict of interest or perverse incentives built into the system. If this seems likely, objective justification should be required. The formula based budgets can be compared to this cost to see how well the formula does in matching the plan costs in each case as well as how they do on average.
 On the other hand, if we actually know what the person needs, why do we need a formula at all?
In future blogs I will look in more depth at the Idaho Children’s Benefits Redesign and the budget formulae in use for that part of the DD services program.