NADD U.S. Public Policy Update

Do We Need To Revisit Our Concepts Of Community Supports?

(NADD Bulletin Vol. 13 #1)

The prevalence of mental illness for persons with cognitive impairment has been well studied over the past 30 years. Although the figures vary it is generally accepted that the incidence of mental illness in persons with an intellectual disability is 3 to 5 times greater than the nondisabled population (American Psychological Association, 2000). Attempts to quantify the percentage of persons with intellectual disability and mental illness have ranged from 20% to 71% (Borthwick-Duffy, 1994; Moss, 2000). There have been disagreements over diagnostic validity, diagnostic overshadowing as well as significant variance in settings. For the purposes of this discussion we will use the most conservative estimate. In July of 2008, the population of the United States was a little over 302 million. Using the above figures that would suggest there are 966,000 people with intellectual disabilities who also show signs and symptoms of a mental health disorder. [more]

School to Adult Transitions at Vanderbilt Program Description

(NADD Bulletin Vol. 12 #6)

The transition from adolescence to adulthood is a difficult process under the best of circumstances. Decisions have to be made and responsibilities have to be taken that may dramatically alter the course of a person’s life. The difficulty is magnified when the person experiencing the transition has multiple or severe disabilities. The failure to properly plan for and address transition issues sets the stage for more intense difficulties later in life. [more]

The TEAM Centers Autism Spectrum Clinic Chattanooga, Tennessee

(NADD Bulletin Vol. 12 #5)

One in six children is diagnosed with a developmental or behavioral disorder in the United States. The Centers for Disease Control states that over one in 166 children are currently diagnosed with autism. Many individuals with autism also have behavioral health needs. TEAM Autism Spectrum Disorders (ASD) Clinic in Chattanooga, Tennessee is a multidisciplinary center designed to serve individuals of all ages, and with any degree of severity, who require specialized autism services. [more]

THE IMPORTANCE OF INTEGRATED SERVICES IN A DOWNTURNED ECONOMY

(NADD Bulletin Vol. 12 #4)

Apportioning scarce resources is an essential activity of economics. Economics takes on a disturbingly human face when the scarce resources are facilities and services and the recipients are individual children and adults with co-occurring developmental and emotional disorders. The stakes are high since the risks include homelessness, institutionalization, or criminalization. In this current economic recession, it is more necessary than ever to stop the historic “ping-pong” approach that is typically used among mental health and developmental disability agencies and other state authorities to determine eligibility and funding. It is no longer acceptable to dispute or ignore the necessity for coordinated and integrated services, where each state’s service systems and authorities mutually plan and work together to address the complex needs of these individuals. [more]

Planned Clinical Respite Services for Individuals with Intellectual Disabilities/ Mental Illness and Their Families

(NADD Bulletin Vol. 12 #3)

Throughout the United States, there is a growing trend to improve community services and supports with the provision of emergency or crisis respite beds outside the individual’s home. This is an important service and the need should not be underestimated. Many individuals with intellectual disabilities and mental/behavioral health service needs may not require psychiatric inpatient stays but may require short term facility-based support to assist the individual and their caregiver during a time of acute difficulty. In addition, the expected length of stay in psychiatric inpatient facilities may require the use of transitional clinical respite as the next step before the return home. Furthermore, we have learned from experience that temporary removal from the place in which difficulties arise can help to inform caregivers about what is needed to prevent future problems. This is especially true if collaboration with the caregiver and an assessment of the crisis situation take place in the context of the provision of respite. [more]

Transforming Missouri’s System for People with Developmental Disabilities

(NADD Bulletin Vol. 12 #1)

A challenge faced by policy planners in the field of developmental disabilities (DD) is how to continue the progress toward full inclusion in a time of state budget crisis and retool the system to address emerging issues for people with a dual diagnosis of DD and mental illness (MI). [more]

Adverse Impact of the Medicare Acute Psychiatric Inpatient PPS For Patients With Co-Occurring Developmental Disabilities and Mental Illness

(NADD Bulletin Vol. 11 #6)

Following is a brief outline developed by members of the NADD US Public Policy Committee and submitted to the DHSS Office on Disability on behalf of individuals with dual diagnosis: [more]

Preventable and treatable medical comorbidities and adverse drug events in people with ID/MH

(NADD Bulletin Vol. 11 #5)

Few studies report the prevalence or nature of medical problems experienced by persons with intellectual disabilities (ID) treated for psychiatric illness (Charlot, Abend, Ravin, Mastis, Hunt & Deustch, manuscript in preparation). This, despite the fact that for people with ID physical distress is often associated with changes in mood, mental status and behavior, as a significant “setting event” (Gardner & Whalken, 1996, Gunsett, Mulick, Fernald & Martin, 1989; Carr, Smith, Giacin, Whelan, & Pancari, 2003). Medical causes for agitated behavior are frequently missed (Abend & Silka, 1999, Ryan & Sunada, 1997) because people with ID are poor reporters of their own health problems. Also, individuals with limited expressive language often show the same externalizing behaviors at different times, for different reasons. These behaviors act as a “final common pathway” for distress (Charlot, Doucette & Mezzacappa, 1993). [more]

Reassessing Psychoactive Medication Use for Challenging Behaviors: When is it an Antidote, and When is it the Problem?

(NADD Bulletin Vol. 11 #4)

For those of us who take care of people with intellectual disabilities, it’s clear that advances in psychopharmacology have helped tremendously over the past twenty years. Advocates have helped us recognize that challenging behaviors may well be evidence of a treatable thought or mood disorder, and this recognition has freed many of our patients from disorganized thought, compulsions, and psychic pain. No longer do caregivers dismiss those with distressing behaviors as having a hopeless consequence of their disability. Indeed, current estimates indicate that approximately 40% of the ID population is diagnosed with a treatable mental illness.[more]

Preventable and treatable medical comorbidities and adverse drug events in people with ID/MH

(NADD Bulletin Vol. 11 #3)

Few studies report the prevalence or nature of medical problems experienced by persons with intellectual disabilities (ID) treated for psychiatric illness. Despite this, for people with ID, physical distress is often associated with changes in mood, mental status and behavior, acting as a significant “setting event” (Carr & Owen-Deschryver, 2007). Medical causes for agitated behavior are frequently missed because people with ID are poor reporters of their own health problems. Also, individuals with limited expressive language often show the same externalizing behaviors at different times, for different reasons. These behaviors act as a “final common pathway” for distress. [more]

The DD/MH Partnership for Children

(NADD Bulletin Vol. 11 #2)

In the summer of 2004, leaders of several public and private child-serving organizations in Hamilton County (Greater Cincinnati area) Ohio embarked on a community-wide effort to improve local services for children and adolescents with co-occurring developmental and mental health disorders. The group identified this population as one of the largest currently served in facilities outside the county at a substantial cost, both financially and emotionally, to the community and to the families and children.[more]

Some families’ perspective on community placement options in Utah

(NADD Bulletin Vol. 11 #1)
The current trend in public policy regarding the closure of state funded institutions has some groups and individuals calling for the closure of the Utah State Developmental Center. Those in favor of closing this facility that serves approximately 230 individuals believe individuals would be better served in more natural settings in the community, and that savings from the closure would result in additional funds for more people to be served in the community overall. Closure advocates also proclaim that needed supports will be available throughout the state to provide a better quality of life and ensure an adequate level of safety to all who access those services. Those who have called for this closure also believe that all families and self-advocates would prefer to have this facility closed.[more]

After 30 years of deinstitutionalization, how are we really doing on behalf of individuals with co-occurring disorders?

(NADD Bulletin Vol. 10 #5)
Since 1977 there has been a movement toward dramatic reductions in the use of large congregate settings for individuals with intellectual disabilities, and to foster integration into ordinary community setting whenever possible. Although there is great variability between the states in the U.S in the way they implemented plans for community based services, there was a consistent movement toward less reliance on institutional settings and increased provision of community based services with a significant decline in resources allocated to institutional settings across the board between 1977 and 1990.[more]

The DD/MH Partnership for Children

(NADD Bulletin Vol. 10 #4)

In the summer of 2004, leaders of several public and private child-serving organizations in Hamilton County (greater Cincinnati area) Ohio embarked on a community-wide effort to improve local services for children and adolescents with co-occurring developmental and mental health disorders. The group identified this population as one of the largest currently served in facilities outside the county at a substantial cost, both financially and emotionally, to the community and to the families and children. [more]

The College of Direct Support

(NADD Bulletin Vol. 10 #2)
The College of Direct Support (CDS) is the product of a commitment of the Research and Training Center on Community Living/University of Minnesota and Elsevier/MC Strategies of Atlanta to build and sustain a state-of-the art, competency-based, nationally valid, multi-media, web-based training program for direct support professionals (DSPs) who support individuals with disabilities. The initial courses of the CDS were created as “Project of National Significance,” funded by the Administration on Developmental Disabilities, with an understanding that with the initial 6 courses completed, CDS would be sustained and expanded through user fees. [more]

Enhanced Quality Assurance for Individuals with Developmental Disabilities and Mental Health Issues in Washington State

(NADD Bulletin Vol. 10 #1)
Unfortunately, it is not uncommon for individuals with multiple service needs that occur across service systems to have difficulty in accessing effective care. Often these individuals find gaps in the system that are difficult to overcome. In response to the need to improve services to individuals with developmental disabilities and mental health needs, a cross systems approach to quality enhancement and service implementation has been undertaken in the state of Washington. [more]

CHILDREN WITH DUAL DIAGNOSES ON THE FEDERAL AGENDA

(NADD Bulletin Vol. 9 #6)
New Resources Available
It is important for public policy initiatives to address needs throughout the lifespan, including those of children and their families. An ongoing federal initiative for children has broad implications for those working with adults as well, in light of calls to improve care for young adults and similar challenges in policy and service delivery in both systems. [more]

The need for a clear understanding of an individual’s right to sexual expression

(NADD Bulletin Vol. 9 #5)
A challenging area for service providers is how to respond to issues of sexual expression among individuals with intellectual disabilities. While much has been written on this topic, there is often disagreement and legitimate concern about the extent to which an individual’s sexual expression should or could be supported given that their disability may affect their ability to consent to sexual activity. [more]

Transitional Housing to Reduce Inpatient Stays

(NADD Bulletin Vol. 9 #4)
A challenge often faced by policy planners is how to assist individuals with intellectual disabilities and mental health needs who no longer require a psychiatric inpatient stay, but are not yet ready to return home. In some states transitional housing has improved both outcomes for individuals and collaborative efforts between service systems. [more]

Provision and Reimbursement of Health Care for People with Developmental Disabilities

(NADD Bulletin Vol. 9 #3)
Traditional health care reimbursement is based on the model of keeping the wheels of industry turning and was designed for generally fit and healthy workers who for the most part have acute care needs in order to return to the workforce. While this model is effective for the population described, it does not work well for people with chronic conditions especially if there are implications on education, employment and productivity, such as present for people with developmental disabilities. [more]

Social-Sexual Education Policy Considerations

(NADD Bulletin Vol. 9 #2)
We are all sexual beings from the day we are born. Sexuality is the exploration of ourselves – our physical bodies, our emotions, our self-worth and image, and our interrelations with others. It is one of the most basic human instincts, and no matter what level our learning abilities, it is a natural part of being human to have the desire to discover what our bodies are all about. It is our ability to learn the responsibilities and consequences of the various aspects of sexuality that will define for each of us to what degree of involvement and discovery we will explore. [more]

Smoking Cessation as a Policy Issue in Dual Diagnosis:

(NADD Bulletin Vol. 9 #1)
According to the CDC, tobacco use and obesity are the two primary causes of preventable death in the U.S.; over 400,000 deaths per year are blamed on tobacco use; and about a quarter of the adult population smokes tobacco. Over the last decade untold numbers of dollars have gone into smoking cessation programs. Cities, towns, and states have implemented broad policy initiatives aimed at limiting the exposure to second-hand smoke. What is the prevalence of tobacco use in individuals with MR/DD? [more]

Health Insurance and Psychiatric Inpatient Care:

(NADD Bulletin Vol. 8 #6)
Change has been a consistent theme in inpatient psychiatry over the past fifteen or more years. In the late 1980′s the average length of stay for a psychiatric patient was over thirty days. Reimbursements equaled or exceeded the cost of providing the service. The treating psychiatrist was solely responsible for care provided to their patient. External clinical oversight was minimal. Psychiatrists addressed a series of symptoms and used the inpatient experience as a time to complete a number of tasks. [more]

State Strategies for Supporting Individuals with Co-Existing Conditions: Preliminary Findings

(NADD Bulletin Vol. 8 #5)
The National Association of State Directors of Developmental Disabilities Services (NASDDDS) is completing a multi-part study of state strategies for supporting individuals with co-existing developmental disabilities and mental health or behavioral conditions. [more]

Consideration of cultural diversity in service provision and planning for individuals with co-occurring developmental disabilities and mental illness (NADD Bulletin Vol. 8 #4)

There is much written on the challenges in supporting people with co-occurring developmental disabilities and mental illness or challenging behaviors. There has also been growing attention to supporting staff, particularly direct support professionals who are from different countries and different cultures. [more]

How to access information with regard to changes in Medicare and Medicaid Policy

(NADD Bulletin Vol. 8 #3)
The U.S. Public Policy Committee is focusing its attention in the coming months on changes in Medicare and Medicaid guidelines and potential effects on the ability for individuals with co-occurring intellectual disabilities and mental health needs to receive mental health, primary medical and dental care and other essential services. Since good advocacy begins with an informed constituency, we urge you to check out the websites listed in this update. [more]

The Dark Cloud over Residential Services Options for Persons with Intellectual Disabilities and Mental Health Issues

(NADD Bulletin Vol. 8 #2)
Nearly 28 years after the initiation of the movement from a reliance on institutional services to community based services for person with Intellectual Disabilities/Developmental Disabilities, a dark cloud is gathering that could jeopardize over a quarter of a century of progress. Without a strategy implemented to address current workforce issues and residential program design limitations, services and supports will continue to fail to address the needs of many individuals with co-occurring intellectual disabilities and mental health issues in the coming years. [more]

Custody Relinquishment: An Avoidable Tragedy

(NADD Bulletin Vol. 8 #1)
Every year many parents of children who have both developmental and emotional disorders are faced with an impossible situation. They must either deny their children the intensive services they desperately need or relinquish custody to state authorities. This tragic choice typically arises when a child requires very costly and specialized care but community-based programs are inadequate. [more]

Limitations in Third Party Reimbursement and the effects on Mental Health Services for Individuals with Intellectual Disability

(NADD Bulletin Vol. 7 #6)
In the United States, the majority of outpatient and inpatient mental health treatment is funded either by public or private insurance programs. The government does not provide a national health care program, and approximately 45 million people do not have any health insurance at all, resulting in a national health care crisis. [more]

Aging and Alzheimer’s Disease among Persons with Developmental Disabilities

(NADD Bulletin Vol. 7 #5)
Increases in life expectancy expose a growing number of persons with developmental disabilities to age related diseases such as Alzheimer’s Disease (AD). For many this becomes at least a secondary and for some, over time, a more significant disabling condition. [more]

How well does your state serve individuals with co-occurring Mental Illness and Intellectual Disabilities?

(NADD Bulletin Vol. 7 #4)
There has been much discussion with regard to the need to improve efforts toward effective service provision between state service systems dedicated to providing mental health care and services to individuals with intellectual disabilities (ID) in order to better serve people [more]

Understanding Supplemental Needs Trusts

(NADD Bulletin Vol. 7 #3)
The federal Omnibus Act of 1993, also called the OBRA-93 Act, is federal legislation that affects how people with disabilities, including dual diagnoses, can have supplemental, also called special, needs trusts and still qualify for Medicaid benefits. The Foster Care Independence Act of 1999 is federal legislation affecting how people with disabilities can have trusts and still qualify for Supplemental Security Income (SSI). [more]

Mental Health Parity: Will This Be the Year?

(NADD Bulletin Vol 7. #2)
Access to comprehensive mental health services has long been a struggle for people with dual diagnoses. Health insurers typically provide less coverage (visit caps, higher co-payments, and higher deductibles) for mental health and substance abuse than for general medical care. This inequity can lead to adverse outcomes. Many people with co-occurring developmental disability and mental disorder, particularly children, are covered under their parents’ insurance plans and regularly face this disparity. [more]

Effective Interagency Collaboration for People with Co-Occurring Mental Illness and Developmental Disabilities

(NADD Bulletin Vol 7. #1)
In a recent NASDDDS Project Technical Report (April 2003), the estimate is that 20-35% of all persons with mental retardation have a diagnosable psychiatric disorder. As a result, most states now acknowledge the importance of comprehensive and coordinated systems of care to meet the needs of individuals with co-occurring disorders. Mental retardation professionals recognize the need for the clinical expertise available in the mental health system to assist those individuals whose mental illness impacts their ability to live and work successfully with others. Unfortunately, barriers are frequently cited regarding access of one system to the other. [more]

Children’s Services in the Real World

(NADD Bulletin Vol. 6, #6)
A real world scenario: Picture a handsome red-headed thirteen-year-old boy Trevor has a variety of neurological problems including intellectual deficits. He begins to attack his little brother quite ferociously around the time that he learns to set large fires. The police are called in along with the fire department. His single mother cannot leave him with a sitter or relatives because of these dangerous behaviors and also because he runs away On a couple of occasions, he has also torn up the drywall in his bedroom. The public school has succeeded in teaching him to read on a basic level, but does not feel it has the resources necessary to work with his outbursts. The mental health agency will not accept him because he has intellectual deficits. The state developmental disabilities agency says they can’t help until he turns twenty-two. [more]