Person-Centered Planning: Evidence-Based Practice, Challenges, and Potential for the 21st Century

Editorial: Introduction to Special Section on Evidence-Based Practices for Persons With Intellectual and Developmental Disabilities

1. Introduction -- Part I: Organizational Preparedness -- 2. Importance of Organizational Infrastructure -- 3. Peer Review -- 4. Evidence-Based Practice and Crisis Intervention -- 5. Empirically-Supported Staff Selection, Training, and Management Strategies -- 6. The Use of Protective Equipment in the Management of Severe Behavior Disorders -- 7. Therapeutic Restraint and Protective Holding -- Part II: Crisis Identification and Acknowledgement -- 8. Assessment of Problem Behavior -- 9. Functional Analysis of Problem Behavior -- 10. Assessment of Pediatric Feeding Disorders -- 11. Unique Considerations of Prader-Willi Syndrome -- 12. The Motivation for Self-Injury: Looking Backward to Move Forward -- 13. Co-occurring Psychiatric Disorders in Individuals with Intellectual Disability -- 14. Involving Family in the Prevention and Intervention of Behavior Problems in Individuals with Intellectual and Developmental Disabilities -- Part III: Navigating the Continuum of Care -- 15. Legal and Ethical Issues -- 16. Less to More Restrictive Settings: Policy and Planning Considerations -- 17. How to Make Effective Evaluation of Psychotropic Drug Effects in People with Developmental Disabilities and Self-injurious Behavior -- 18. Consultation in Public School Settings -- 19. Home-Based Services -- 20. Components of a Private School Program Serving Children and Adolescents with Severe Problem Behavior -- 21. Treating Severe Problem Behavior within Intensive Day-Treatment Programs -- 22. Intensive Treatment of Pediatric Feeding Disorders -- 23. Outpatient Units -- 24. Intensive Outpatient Services -- 25. Do Good, Take Data, Get a Life, and Make a Meaningful Difference in Providing Residential Services.

Disability, Hospital Care, and Cost: Utilization of Emergency and Inpatient Care by a Cohort of Children with Intellectual and Developmental Disabilities

Background: Effective person-oriented goal setting in care environments is challenging owing to the complexity of the environment, and the requirement of supportive person-centred care. Health and social care settings, such as the community-care sector, aim to holistically address persons’ care needs, however, much of the guidance in the literature focuses explicitly on health. Effective person-centred care should consider all goals of the person, whether these goals focus on career, relationship, and/or health domains. Person-centred care responds to a person’s wants/needs, with a consideration for how these revolve around their goals. However, little is known about how community-care organizations use tools such as person-centred planning (PCP) to meet the needs and goals of persons-supported. Aim and Methods: To understand how a person-centred participatory goal setting process is carried out in a care environment, we used an integrated knowledge translation approach to collaborate with community care leaders. Our co-designed qualitative descriptive research project explored a community-care’s approach to person-centred goal setting in Ontario, Canada. We conducted 11 semi-structured interviews with community-care staff to understand their perspective of the PCP process, including key components, facilitators, barriers, and impacts. Results: The interviews with staff provide a thorough understanding of the PCP process used by the community-care organization from beginning to end, including the creation and implementation of PCPs. Five themes were strongly exemplified in our study: organizational culture, flexibility, accountability, utilizing staff characteristics to their maximum potential, and the positive impacts of PCPs. The PCPs displayed benefits not only for the persons-supported, but for the people who support and surround them, including family, friends, staff, and the wider community. Moreover, our study demonstrates how a community-care organization has been able to balance the needs of the organization and the persons they serve within a government-mandated planning process. Implications: Our study highlights how a community-care organization can facilitate person-centred services through PCPs and has implications for a wider uptake of PCPs amongst individuals with intellectual and developmental disabilities. The outcomes of this project will inform the spread of PCPs in community-care organizations and encourage other professionals to explore the use of PCPs in their own settings. Additionally, PCPs have the potential to be effectively implemented for other vulnerable populations. Next Steps: Future research should explore the use of a flexible framework to guide the use of PCPs in organizations. Moreover, governments should support organizations in evaluating their programs to support the spread of effective programs and to ensure that future implementation can be successful.

There is both an intuitive and theoretical link between self-determination and quality of life for people with intellectual and developmental disabilities. Theoretically, definitions of self-determination have framed the construct with regard to its contribution to a person’s overall quality of life, while theoretical frameworks of quality of life have included self-determination among the core dimensions contributing to enhanced quality of life. These theoretical linkages have been supported by research on the quality of life and self-determination of people with intellectual and developmental disabilities and the relationships between these constructs. This article provides an overview of theoretical frameworks of self-determination, their relationship with theoretical frameworks of quality of life, and research pertaining to these constructs with people with intellectual and developmental disabilities. It is concluded that self-determination and quality of life are important constructs in designing supports that enable people with intellectual and developmental disabilities and that an important means to enhance the quality of life of people with intellectual and developmental disabilities is to promote and enable people to be self-determined.

Intellectual disability is a general term that describes intellectual capacity and adaptive functioning. There are many causes and many co-occurring conditions. To appreciate and respect the uniqueness of each individual and to choose appropriate interventions, it is critical that, if possible, the cause for intellectual disability be identified or the conditions that led to or sustain it be recognized. This chapter begins with an overview followed by an approach to understanding causation, a description of how etiology is determined, consideration of the neurobiological/environmental interface, a discussion of the evaluation process to determine causes and conditions related to diagnoses, and a discussion of risk factors. Intellectual disability is an intellectual, cognitive, and developmental disability that profoundly affects an individual’s functioning and adaptation to everyday life. Intellect refers to mental ability or capacity, the power of thought, and the ability to reason and solve problems. Mental capacity is distinguished from perception, emotions, and feelings. Intelligence refers to facility and quickness in understanding and problem solving. In intellectual disability, there is reduced mental capacity. Cognition refers to the use or handling of knowledge through mental activities associated with thinking, learning, and memory, which are necessary processes to acquire knowledge. In intellectual disability, there are cognitive disabilities that vary depending on the individual syndrome. The extent of intellectual disability varies among syndromes, and there may be variations within a syndrome. Both cognition and intellect are linked to cortical brain function. Intellectual disability is a developmental disability with onset during the developmental period. Thus, there are delays in meeting developmental mile stones in motor, fine motor, language, and psychosocial areas. Finally, there are difficulties in adaptive function and in the mastery of developmental tasks as a result of intellectual, cognitive, and developmental disabilities. A focus on the etiology of intellectual disability is needed for research, clinical, and administrative purposes. This chapter will review the multiple causes of intellectual disability, considering the interface between genetic, neurobiologic, and environmental factors and causation. It emphasizes the importance of a comprehensive evaluation and provides guidelines for conducting an evaluation. Associated mental, emotional, and behavioral disorders are discussed in chapter 6.

Amicus Brief of Disability Services Experts in Markelle Seth v. District of Columbia, et al.

As a physical therapy practitioner who primarily works with persons who have developmental disabilities, I have become increasingly dismayed at the Medicaid cutbacks in Tennessee, the state in which I practice. I am confident that this is also the case in many other states that face budget shortfalls due to the current economic downturn. However, in Tennessee, this has been ongoing for more than just the past year or so. Medicaid has been on the chopping block for approximately the past 6 years. A position statement adopted by the Arc and the American Association on Intellectual and Developmental Disabilities (AAIDD) maintains that ‘‘Medicaid reform should address wait lists, the quality of service, providers and staff, and increased availability of quality health care services for individuals with intellectual and/or developmental disabilities’’ (AAIDD/The Arc of the United States, 2008). It is extremely disheartening to read this proclamation and realize that just the opposite is occurring. Although everyone with a developmental disability does not have Medicaid, the majority of the individuals I see in Tennessee with developmental disabilities have Medicaid as their primary insurance, and for others it may be a secondary source of payment. The Medicaid program in Tennessee has been given the designation of TennCare and is billed as Tennessee’s expanded Medicaid program. There is also a special statewide Medicaid Waiver program to assist some individuals over age 21 years with an intellectual disability who are deemed eligible, in addition to the TennCare Medicaid program. The TennCare plan is administered by several insurance entities, such as Blue Cross Blue Shield of Tennessee (BlueCare) and United Healthcare (Americhoice TennCare). TennCare currently covers 1.2 million residents in Tennessee and uses a managed care model (TennCare Overview, n.d.). According to professionals at the state TennCare Budget Presentation at the 106th General Assembly Legislative Budget Hearings (2010), states around the country are facing a $180 billion shortfall for Medicaid spending this year, and many are cutting back on services. It is apparent to me that TennCare was already underfunded prior to the nascent recession. Clients I have served over the past 5 years who rely on TennCare or Medicaid Waiver to reimburse for services such as therapy or nursing have continually faced threats that his or her services would be cut or eliminated entirely. In addition, these individuals and their families or caregivers have had problems finding physicians who accept TennCare; locating specialists to treat them is especially problematic. Other individuals I have seen have been denied needed devices, such as wheelchairs. Still others have been dropped from TennCare altogether and are unable to afford services. If service providers who accept TennCare can be found, delays in service are not uncommon. The added emotional stress and privation placed on the person with the developmental disability and his or her family and caregivers when services are not readily available, or are denied outright, can be immense. Families and other advocates must battle TennCare to merely preserve current levels of services, much less improve on what has been offered up until now. I have heard stories of families who are told by TennCare representatives that their son or daughter no longer qualifies for services such as in-home skilled nursing care. When the family member responds that they work during the day and cannot care for their loved one, the TennCare representative would counter that another family member could care for the individual. How can another family member be expected to be available 40 or more hours per week to care for an individual who has severe disabilities? Furthermore, many of the children and adults I see are cared for by a single parent. I am aware of several persons with INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 1: 50–52 | FEBRUARY 2011

PART I: FOUNDATIONS.- Epidemiology and Etiology of Mental Retardation.- The Autism Spectrum.- Cerebral palsy.- Epilepsy in People with Mental Retardation.- Pediatric Brain Injury.- Behavioral Effects of Genetic Mental Retardation Disorders.- Social Acceptance and Attitude Change: Fifty Years of Research.- PART II: DISABILITY SERVICES.- Evaluating Developmental Disabilities Services.- Educational Service Interventions and Reforms.- Psychological Services for Older Adults with Intellectual Disabilities.- Residential and Day Services.- Behavioral-Clinical Consultation in the Developmental Disabilities: Contemporary and Emerging Roles.- Advocacy and Litigation in Professional Practice.- PART III: ASSESSMENT AND DIAGNOSIS.- Intellectual Assessment and Intellectual Disability.- Adaptive Behavior.- Psychosocial and Mental Status Assessment.- Functional Behavioral Assessment in Practice: Concepts and Applications.- Psychoeducational Assessment.- Developmental and Behavioral Screening.- Forensic and Psychosexual Assessment.- Family Assessment and Social Support.- PART IV: PREVENTION AND TREATMENT.- Science to Practice in Intellectual Disability: The Role of Empirically Supported Treatments.- Early Intervention: Background, Research Findings, and Future Directions.- The System of Early Intervention for Children with Developmental Disabilities: Current Status and Challenges for the Future.- Stereotypy, Self-injury, and Related Abnormal Repetitive Behaviors.- Psychopathology Among People with Developmental Delays - Assessment and Treatment.- Aggression in Persons with Intellectual Disabilities and Mental Disorders.- Speech and Language Deficits in Children with Developmental Disabilities.- Functional Skills Training for People with Intellectual and Developmental Disabilities.- Social Skills Training for Children with Intellectual Disabilities.- Vocational Skills and Performance.- Sex Offending Behavior.- Pharmacotherapy.- PART V: ETHICAL ISSUES.- Ethical Issues in Clinical Services and Research.- Ethics and Values in Behavioral Perspective.

Date Presented 04/06/19 Employment rates among people with intellectual and developmental disabilities (IDD) are historically low (26%) when compared to people without disabilities (76%). Understanding a person’s strengths, hopes and dreams for the future assists them in setting and achieving vocational goals. As person-centered planning (PCP) is embraced by many state agencies serving people with IDD across the US, occupational therapists have unique skill sets to play a vital role in the PCP process. Primary Author and Speaker: Meghan Blaskowitz Additional Authors and Speakers: Lindsay Layer, Sarah Scalero, Abigail Gore, Amy Castagnino, Katrina McNally

Person-centred planning has played a key role in the transformation of intellectual disabilities services for more than a decade. The literature has identified clear advantages for service users when service delivery is planned around the individual rather than the user is made to fit into service structures. Researchers however have pointed out that there is a lack of evidence that person-centred planning positively influences outcomes for users. Our study examined the application of person-centred planning during transition for young people with intellectual disabilities. We investigated the nature and content of 44 person-centred reviews of transition planning for this population in a local authority in the UK. We carried out a documentary analysis of all person-centred plans and conducted telephone interviews with all families participating in the programme. We focused on the issue of attendance at review meetings and what was discussed during the meetings. Analysis of the data shows an increase in the participation of young people and carers at review meetings and a significant shift in topics discussed during the transition planning process compared with previous programmes. However, some of these effects may dissipate once young people are actually leaving school as planning well is not synonymous with having an improved range of placement options. The findings suggest that person-centred planning can impact positively on some aspects of transition planning, while it may be too optimistic to expect radical improvement in other area. Key to further improvements is to complement person-centred planning with consistent involvement of all relevant stakeholders in planning for individuals.

BackgroundGoal setting for persons within health and social care environments can be a challenging task; although health and social care settings aim to address a person’s care needs, the literature tends to focus on health. Person-centred care should encompass the goals/needs/wants of the person, whether these goals focus on career, relationship, and/or health domains. To understand how a person-centred participatory goal setting process is carried out in a care environment, we used an integrated knowledge translation approach.MethodsWe conducted 11 semi-structured interviews with community-care staff to understand a person-centred planning process, including key components and impacts.ResultsThe interviews provide a thorough understanding of an implemented approach to person-centred plans, including its creation, implementation, and benefits (for the person-supported, family, friends, and staff). Person-centred plans provide a map with which to plan activities based on a persons’ goals, interests, and capacities, and have positive impacts for the person-supported, family, friends, and staff.ConclusionsOur study highlights how a community-care organization can facilitate person-centred services through person-centred plans and has implications for wider uptake of person-centred plans in community-care organizations.

The purpose of this study was to examine teacher perspectives about evidence-based practices (EBP) and decision-making for students with intellectual and developmental disabilities. Given the current EBP movement, our study sought to understand practitioner definitions and perspectives on EBP and decisionmaking. Interview data from nine special education teachers who work with students with intellectual and developmental disabilities were conducted, and then transcribed and coded in order to examine their perspectives and beliefs about how organizations, people and tools influence their understandings of EBP. Findings demonstrated that how teachers conceptualized EBPs and described their decision making about instruction was complex and painted a multi-faceted image of how they conceptualized organizational constraints, considered the value of research, and what tools were available to them.

Accessible Summary We asked parents of children with intellectual and developmental disabilities to complete a survey to help us understand more about the foot problems their children have experienced. Parents told us that foot problems were common in their children, 75% of the parents raised this as a concern. Less than half of the parents felt confident with managing these problems. Buying shoes was considered difficult. The results from this survey tell us that foot problems in children and young people with intellectual and developmental disabilities are a concern. It is important to ensure that children have access to foot care services. AbstractBackgroundFoot problems have been reported to be a very common health issue in adults with intellectual disabilities; foot problems in children and young people are, however, poorly understood. The aim of this study was to explore foot care needs of children and young people with intellectual and developmental disability.MethodsAn exploratory, cross‐sectional online survey was undertaken across a four‐month period. A purposive snowball sampling approach was adopted. The survey tool was piloted before launch and comprised three sections. The first section elicited information relating to parent/caregiver status, diagnosis, secondary diagnoses and age of child/young person. The second domain explored foot care and sought to obtain information about foot problems, access to health services and existing knowledge about foot health. The third domain focussed on footwear. Ethical approval was granted from the host institution, and all participants provided electronic consent before completing the survey.ResultsData were collected from 49 parents/parental caregivers reporting on behalf of their children (mean age 7 years of age; SD 4.5 years of age). Parents reported foot problems to be very common (75%), and pes planus was the most frequent concern (51%). Twenty‐four parents reported difficulties with finding shoes (48%). A mismatch between foot shape and the shoe (30%) or complications with orthotic devices (14%) within the shoe were highlighted.ConclusionThe results demonstrated that the burden of foot problems in children and young people with intellectual and developmental disabilities is considerable. The findings highlight the importance of access to foot care services for these children.

Risk for osteopenia and osteoporosis in institution-dwelling individuals with intellectual and/or developmental disabilities.