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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.

Conclusion

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

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 $734/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.

Conclusion:

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.

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
 
 
Introduction
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

Tera’s Story

My name is Tera and I am very grateful that DisAbility Rights Idaho helped me become more independent.  I love my parents, but they were my guardians and made too many decisions for me.  Sometimes they did not let me go even though   the activity was supervised and safe.  I became angry and frustrated with this situation.

Perhaps I needed a guardian when I was young but I have learned new skills and make better decisions now.  I lived in a certified family home for the last six years and had a good job.  I felt that I had  learned to make good choices for myself and no longer needed a guardian.

DRI helped me ask the court to change my guardianship.  My parents finally agreed.  It is wonderful to be in charge of my own life now.  But best of all I just got married!  My parents did not want me to get married before even though they liked my boyfriend.  I am so happy to now be married and living as a family like other people.

I believe I can have a better relationship with my parents now.  I will still ask my parents for advice, but I am much happier now being able to make my own decisions.  I know that I would not have been able to become independent without the help of DisAbility Rights Idaho.

Matthew’s Story

I would like to express my appreciation to DisAbility Rights Idaho and especially Dina Flores-Brewer, for their assistance.  My foster child has significant social skills and behavioral problems dating to early childhood.  I allowed the school to enroll him in the EXCEL program, which was presented as an opportunity for the special attention on social skills he needed.  It was quickly apparent that my child’s problems were made worse by how he was treated instead of making them better.  Worse still, since he was segregated away from his peers for most of the day, without good role models, he was learning new and different manipulative behaviors from the EXCEL students.

Even though he was not a dangerous child, he was traumatized by being placed in a padded room for minor acting out, was not allowed to be with other children before or after school, and had his backpack searched daily, despite the fact he had not brought anything dangerous to school.  It also became clear this was not the temporary placement the school made it out to be.  It was at this point that I enlisted the help of DRI.

Other parents who have been through a similar experience know how difficult it is to advocate for their child at school meetings where the “team” consists of 5-6 school officials presenting a coordinated and unified front.  If the parent, who is often thought to be “too close to the problem”, disagrees with anything . . . well, the vote seems to always be 6 to 1.

When Dina and my child’s service coordinator started coming to the meetings, the atmosphere changed dramatically.  Dina lobbied effectively for my child’s fundamental right to have as normal an education as possible and not merely to be isolated out of sight with other “problem” children.  While we have for some time recognized the right to inclusion for children with physical limitations, she helped enforce that right for emotionally challenged children as well.

While my child technically “graduated” from EXCEL program, I am convinced that never would have happened were it not for Dina’s assistance.

*Name changed to protect privacy.

Sandy’s Story

I am Sandy* and I now use a wheelchair because of a recent accident.  When it came time to purchase a wheelchair, I knew getting the right one was important for my recovery.  My doctors and therapists recommended an ultra-lightweight wheelchair.  This wheelchair was necessary because it provided the right seating system and allowed me to use it for longer periods without tiring.  It also would prevent damage to my arms and shoulders caused by repetitive use.

Medicaid, however, saw it differently and only agreed to fund a heavier wheelchair without the proper seating system.  I tried to fight this decision on my own and even represented myself at the hearing.   When I lost the appeal, I knew I needed legal help and called DisAbility Rights Idaho.  The DRI attorney agreed to accept my case.  She convinced Medicaid to look at my request again.  My therapists provided more information to Medicaid and finally the ultra-lightweight wheelchair was approved.

Independence means everything to me and getting this wheelchair will help me reach my goal of being as independent as possible.  DRI is awesome!

* Name changed to protect privacy.

Stephanie’s Story

My name is Stephanie and thanks to DRI I have a job, medical coverage, and money to pay my mortgage.

If you have ever faced being sick, unemployed, and without medical coverage, you know how desperate I felt.  Carpel tunnel syndrome caused me to lose my job and medical coverage.  Therefore, I could not pay for the surgery needed to correct it.   I applied for Social Security benefits but was denied.  I felt sure I would be homeless soon!

I heard about DisAbility Rights Idaho and called right away.  A DRI attorney agreed to appeal my Social Security denial.  She also told me I might be eligible for services from the Idaho Division of Vocational Rehabilitation.  Fortunately, I was eligible and this agency paid for my surgery and helped me find part-time work. Later, the DRI attorney won my Social Security appeal.

My life started to come back together.  I needed the extra money from work, but I was afraid that if I worked, I would lose my Social Security and Medicaid coverage.  Luckily, DRI also helps people learn about special Social Security and Medicaid programs that allow people to work and still receive benefits.  I can work part-time and receive some monthly benefits and Medicaid.  DRI told me that I when I am ready to work full-time, I can still keep my Medicaid.

I am very thankful to DRI for helping me in so many ways!

* Name changed to protect privacy