The International Handbook of Applied Research in Intellectual Disabilities, 2004
... Roger J. Stancliffe University of Sydney, Australia Eric Emerson Lancaster University, UK and... more ... Roger J. Stancliffe University of Sydney, Australia Eric Emerson Lancaster University, UK and K. Charlie Lakin University of Minnesota, USA ... Comparison of different models of residential support has been motivated primarily by the strong interest in knowing which models are ...
Individual Habilitation Plan objectives for adults with mental retardation living in institutiona... more Individual Habilitation Plan objectives for adults with mental retardation living in institutional or community settings were evaluated for effectiveness and quality. Effectiveness was assessed by contrasting change in relevant outcomes over time for participants with and without individual plan objectives in specified content areas. No significant change in outcomes associated with having an objective was detected for any of the content areas. Except for functionality, ratings of individual plans on all quality domains were poor. Regression analyses mostly failed to show any significant relationship between quality domain ratings and outcomes, although there was weak but inconsistent evidence for validity of the technical adequacy and data-collection quality domains. Findings present a challenge to current expectations that presence and quality of IHP objectives are associated with improved outcomes.
Background: The 2008 American Urological Association (AUA) Best Practice Statement on antimicrobi... more Background: The 2008 American Urological Association (AUA) Best Practice Statement on antimicrobial prophylaxis states that prophylaxis is not warranted for subjects with normal risk profile undergoing cystourethroscopy unless manipulation such as ureteral stent removal is performed. To date no studies have specifically assessed the need for antimicrobial prophylaxis during cystoscopic ureteral stent removal. We sought to determine the risk of infectious complications following cystoscopic stent removal with and without antimicrobial prophylaxis. Methods: A retrospective review identified 70 subjects who underwent cystoscopic ureteral stent removal following kidney stone treatment, under the care of two separate urologists with differing practice patterns. Each cohort consisted of 35 subjects: with and without prophylactic antibiotics. Clinical variables assessed included demographics, type of stone intervention, prior urinary tract infection (UTI) history, immunocompromising comorbidities, antimicrobial class at time of stone intervention, and antimicrobial administration at cystoscopic stent removal. The primary outcome assessed was development of symptomatic UTI within 4 weeks after stent removal. Results: Overall, 35 patients (50%) received antimicrobial prophylaxis at the time of stent removal and 35 (50%) did not receive antimicrobial prophylaxis, with no demographic or clinical differences between cohorts. Two patients in the antimicrobial cohort (6%) developed a UTI and none of the patients who did not receive antimicrobial prophylaxis developed a UTI (P=0.15). Conclusions: In our cohort study antimicrobial prophylaxis at the time of cystoscopic stent removal did not appear to provide a significant benefit in UTI prevention. Prospective studies would assist in validating these findings.
This feature issue focuses on strategies to support parents who have cognitive limitations to be ... more This feature issue focuses on strategies to support parents who have cognitive limitations to be successful in raising their children. Articles include: (1) "Encounters with Entropy: Marge's Journey from System to System" (John Franz and Pat Miles) that tells a fictional story of a mother with disabilities to illustrate the tendency of human service systems to operate independently of one another, to stay locked into rigidly structured responses, and to avoid collaborative responses; (2) "Helping Parents Be Parents" (Howard Mandeville and Polly Snodgrass); (3) "Mothers with Developmental Disabilities: Common Issues and Needs" (Bette Keltner); (4) "Parents with Cognitive Limitations: What Do We Know about Providing Support?" (Lynda Anderson and K. Charlie Lakin); (5) "Perpetuating the Sprit of Kako'o" (Stacy Kong); (6) "Supporting Parenting Rights: Arc Hennepin" (Lori Gildersleeve); (7) "Two Decades of Parent Support: Reuben Lindh Parenting Program" (Audrey Kvist); (8) "Supporting Fathers with Cognitive Limitations" (Mark D. Simpson and others); (9) "Parents with Cognitive Limitations: Challenging Myths, Changing Perceptions" (Alexander J. Tymchuk); (10) "Supporting Parents and Children during Termination of Parental Rights" (Deborah Muenzer-Doy and Lynda Anderson); (11) "Strengthening Families of Older Children" (Gwynnyth Llewellyn); (12) "The Adult Children of Parents with Learning Difficulties" (Tim Booth and Wendy Booth); (13) "Welfare Reform and Parents with Disabilities" (Caroline Hoffman and Howard Mandeville); (14) "System Abuse and the Power of Advocacy" (Tim Booth and Wendy Booth); and (15) "How Small Initiatives Make a Difference" (Rick Brooks). The issue closes with a list of supported parenting resources. (CR)
This report is based on statistics gathered and analyzed as part of the National Residential Info... more This report is based on statistics gathered and analyzed as part of the National Residential Information Systems Project on Residential Services (RISP). The authors wish to thank the Administration on Developmental Disabilities (ADD), its Commissioner Bob Williams, and our Project Officer, Rita Stone, for ongoing support of this project and its various activities. We also appreciate the supplemental support received from the Health Care Financing Administration (HCFA) and from Sam Brown and Nancy Miller of HCFA's Office of Research and Demonstrations. Many people other than the chapter authors played important roles in acquiring, analyzing, and describing the data summarized in this report. Our special thanks to Gary Smith for his invaluable editorial assistance. Laura Lafrenz and Linda Schaefer prepared all text, tables and figures contained in the report. Brian Burwell of the MEDSTAT Group provided ICF-MR expenditure data summarized in Chapter 3. Pete Burdette of HCFA provided valued assistance in acquiring and editing the data in Online Survey Certification and Reporting System on ICF-MR utilization. We are very grateful to Pamela Baker and David Lawson of the Association of Public Developmental Disabilities Administrators for their assistance and support in the survey of all large public residential facilities. That survey had been conducted by Richard Scheerenberger in conjunction with the RISP project until his death in 1992. Although we at the University of Minnesota were pleased to have been able to reactivate this survey during the past year, it will always be "Dick's survey." As always, we are totally indebted to the more than 300 state and individual facility respondents who provided the statistics used in this report. Clearly this report would not be possible without their knowledge and generous assistance.
Intellectual and Developmental Disabilities, Jun 1, 2008
This article examines expenditures for a random sample of 1,421 adult Home and Community Based Se... more This article examines expenditures for a random sample of 1,421 adult Home and Community Based Services (HCBS) and Intermediate Care Facility/Mental Retardation (ICF/MR) recipients in 4 states. The article documents variations in expenditures for individuals with different characteristics and service needs and, controlling for individual characteristics, by residential setting type, Medicaid program (ICF/MR or HCBS), and state. Annual average per-person Medicaid expenditures for HCBS recipients were less than those of ICF/MR residents ($61,770 and $128,275, respectively). HCBS recipients had less severe disability (intellectual, physical, health service needs) than ICF/MR residents. Controlling these differences, and for congregate settings, HCBS were less costly than ICFs/MR, but this distinction accounted for only 3.3% of variation in expenditures. Persons living with families receiving HCBS ($25,072) and in host families (including foster, companion, or shared living arrangements; $44,112) had the lowest Medicaid expenditures.
This report focuses on the current status of national and state information systems on residentia... more This report focuses on the current status of national and state information systems on residential services for persons with developmental disabilities. Ten national databases and 24 state databases are profiled. Each profile presents a summary of the types of information collected and how this information can be accessed. Data elements are presented to identify possible linkages or data aggregations across state data collection efforts or to suggest potential comparisons across states. Each database summary includes the following information: sponsor, population included, purpose/relevance, design, periodicity, geographic level, sociodemographic data, services data, publication of data, and contact person. The report also suggests supports that would assist states in improving, utilizing and sharing their data collection systems. Three tables are provided indicating the individual characteristics, functional characteristics, residential service types, and funding source of the different databases. An appendix lists state database contacts. (CR)
characteristics of and service use by persons with MR/DD living in their own homes or with family... more characteristics of and service use by persons with MR/DD living in their own homes or with family members. Here we reexamine employment services and status, personal supports used and needed, professional and mental health services, previous longterm care services, transportation services, preventative health care, and waiting for services. The new component in this Brief is an examination of how service use and needs vary by age (for persons 18-35 years versus persons 36 years and older), gender, and disability group (persons with intellectual and/or developmental disabilities [ID/DD] versus persons with one or more substantial functional limitations who do not meet the criteria of having ID/DD). This Brief uses a series of logistic regressions to examine how the services and support needs vary by age, gender, and disability group after controlling for overall health status, race, and economic status.
This report from the ongoing National Residential Information Systems Project provides statistics... more This report from the ongoing National Residential Information Systems Project provides statistics on persons with mental retardation and related developmental disabilities (MR/DD) receiving residential services in the United States for the year ending June 30, 1996, as well as comparative statistics from earlier years. Section 1 contains chapters on populations of state-operated residential settings in 1996, longitudinal trends in large state-operated residential facilities 1950-1996, large state MR/DD residential facility closures 1960 to 2000 and individual facility populations and per diem rates in fiscal year 1996, and characteristics and movement of residents of large state facilities. Section 2 contains chapters on services provided by state and nonstate agencies in 1996, number of residential settings and residents by type of living arrangement, and changing patterns in residential service systems 1977-1996. Section 3 focuses on the utilization of the Medicaid program to sponsor long-term services for persons with MR/DD. Chapters cover Medicaid long-term care programs; utilization of and expenditures for Medicaid institutional, home, and community-based services; and conversion of Medicaid Intermediate Care Facilities for persons with MR/DD to home and community based services. The last section contains state profiles of selected service indicators 1977-1996. (Contains 50 references, 54 tables, and 23 figures.) (CR)
Intellectual and Developmental Disabilities, Jul 1, 2009
Shortly after the inception of Medicaid in 1965, states began to place persons with intellectual ... more Shortly after the inception of Medicaid in 1965, states began to place persons with intellectual or developmental disabilities in nursing facilities where their care was eligible for federal cost share under Medicaid. Advocates responded, noting that many more people with ...
The International Handbook of Applied Research in Intellectual Disabilities, 2004
... Roger J. Stancliffe University of Sydney, Australia Eric Emerson Lancaster University, UK and... more ... Roger J. Stancliffe University of Sydney, Australia Eric Emerson Lancaster University, UK and K. Charlie Lakin University of Minnesota, USA ... Comparison of different models of residential support has been motivated primarily by the strong interest in knowing which models are ...
Individual Habilitation Plan objectives for adults with mental retardation living in institutiona... more Individual Habilitation Plan objectives for adults with mental retardation living in institutional or community settings were evaluated for effectiveness and quality. Effectiveness was assessed by contrasting change in relevant outcomes over time for participants with and without individual plan objectives in specified content areas. No significant change in outcomes associated with having an objective was detected for any of the content areas. Except for functionality, ratings of individual plans on all quality domains were poor. Regression analyses mostly failed to show any significant relationship between quality domain ratings and outcomes, although there was weak but inconsistent evidence for validity of the technical adequacy and data-collection quality domains. Findings present a challenge to current expectations that presence and quality of IHP objectives are associated with improved outcomes.
Background: The 2008 American Urological Association (AUA) Best Practice Statement on antimicrobi... more Background: The 2008 American Urological Association (AUA) Best Practice Statement on antimicrobial prophylaxis states that prophylaxis is not warranted for subjects with normal risk profile undergoing cystourethroscopy unless manipulation such as ureteral stent removal is performed. To date no studies have specifically assessed the need for antimicrobial prophylaxis during cystoscopic ureteral stent removal. We sought to determine the risk of infectious complications following cystoscopic stent removal with and without antimicrobial prophylaxis. Methods: A retrospective review identified 70 subjects who underwent cystoscopic ureteral stent removal following kidney stone treatment, under the care of two separate urologists with differing practice patterns. Each cohort consisted of 35 subjects: with and without prophylactic antibiotics. Clinical variables assessed included demographics, type of stone intervention, prior urinary tract infection (UTI) history, immunocompromising comorbidities, antimicrobial class at time of stone intervention, and antimicrobial administration at cystoscopic stent removal. The primary outcome assessed was development of symptomatic UTI within 4 weeks after stent removal. Results: Overall, 35 patients (50%) received antimicrobial prophylaxis at the time of stent removal and 35 (50%) did not receive antimicrobial prophylaxis, with no demographic or clinical differences between cohorts. Two patients in the antimicrobial cohort (6%) developed a UTI and none of the patients who did not receive antimicrobial prophylaxis developed a UTI (P=0.15). Conclusions: In our cohort study antimicrobial prophylaxis at the time of cystoscopic stent removal did not appear to provide a significant benefit in UTI prevention. Prospective studies would assist in validating these findings.
This feature issue focuses on strategies to support parents who have cognitive limitations to be ... more This feature issue focuses on strategies to support parents who have cognitive limitations to be successful in raising their children. Articles include: (1) "Encounters with Entropy: Marge's Journey from System to System" (John Franz and Pat Miles) that tells a fictional story of a mother with disabilities to illustrate the tendency of human service systems to operate independently of one another, to stay locked into rigidly structured responses, and to avoid collaborative responses; (2) "Helping Parents Be Parents" (Howard Mandeville and Polly Snodgrass); (3) "Mothers with Developmental Disabilities: Common Issues and Needs" (Bette Keltner); (4) "Parents with Cognitive Limitations: What Do We Know about Providing Support?" (Lynda Anderson and K. Charlie Lakin); (5) "Perpetuating the Sprit of Kako'o" (Stacy Kong); (6) "Supporting Parenting Rights: Arc Hennepin" (Lori Gildersleeve); (7) "Two Decades of Parent Support: Reuben Lindh Parenting Program" (Audrey Kvist); (8) "Supporting Fathers with Cognitive Limitations" (Mark D. Simpson and others); (9) "Parents with Cognitive Limitations: Challenging Myths, Changing Perceptions" (Alexander J. Tymchuk); (10) "Supporting Parents and Children during Termination of Parental Rights" (Deborah Muenzer-Doy and Lynda Anderson); (11) "Strengthening Families of Older Children" (Gwynnyth Llewellyn); (12) "The Adult Children of Parents with Learning Difficulties" (Tim Booth and Wendy Booth); (13) "Welfare Reform and Parents with Disabilities" (Caroline Hoffman and Howard Mandeville); (14) "System Abuse and the Power of Advocacy" (Tim Booth and Wendy Booth); and (15) "How Small Initiatives Make a Difference" (Rick Brooks). The issue closes with a list of supported parenting resources. (CR)
This report is based on statistics gathered and analyzed as part of the National Residential Info... more This report is based on statistics gathered and analyzed as part of the National Residential Information Systems Project on Residential Services (RISP). The authors wish to thank the Administration on Developmental Disabilities (ADD), its Commissioner Bob Williams, and our Project Officer, Rita Stone, for ongoing support of this project and its various activities. We also appreciate the supplemental support received from the Health Care Financing Administration (HCFA) and from Sam Brown and Nancy Miller of HCFA's Office of Research and Demonstrations. Many people other than the chapter authors played important roles in acquiring, analyzing, and describing the data summarized in this report. Our special thanks to Gary Smith for his invaluable editorial assistance. Laura Lafrenz and Linda Schaefer prepared all text, tables and figures contained in the report. Brian Burwell of the MEDSTAT Group provided ICF-MR expenditure data summarized in Chapter 3. Pete Burdette of HCFA provided valued assistance in acquiring and editing the data in Online Survey Certification and Reporting System on ICF-MR utilization. We are very grateful to Pamela Baker and David Lawson of the Association of Public Developmental Disabilities Administrators for their assistance and support in the survey of all large public residential facilities. That survey had been conducted by Richard Scheerenberger in conjunction with the RISP project until his death in 1992. Although we at the University of Minnesota were pleased to have been able to reactivate this survey during the past year, it will always be "Dick's survey." As always, we are totally indebted to the more than 300 state and individual facility respondents who provided the statistics used in this report. Clearly this report would not be possible without their knowledge and generous assistance.
Intellectual and Developmental Disabilities, Jun 1, 2008
This article examines expenditures for a random sample of 1,421 adult Home and Community Based Se... more This article examines expenditures for a random sample of 1,421 adult Home and Community Based Services (HCBS) and Intermediate Care Facility/Mental Retardation (ICF/MR) recipients in 4 states. The article documents variations in expenditures for individuals with different characteristics and service needs and, controlling for individual characteristics, by residential setting type, Medicaid program (ICF/MR or HCBS), and state. Annual average per-person Medicaid expenditures for HCBS recipients were less than those of ICF/MR residents ($61,770 and $128,275, respectively). HCBS recipients had less severe disability (intellectual, physical, health service needs) than ICF/MR residents. Controlling these differences, and for congregate settings, HCBS were less costly than ICFs/MR, but this distinction accounted for only 3.3% of variation in expenditures. Persons living with families receiving HCBS ($25,072) and in host families (including foster, companion, or shared living arrangements; $44,112) had the lowest Medicaid expenditures.
This report focuses on the current status of national and state information systems on residentia... more This report focuses on the current status of national and state information systems on residential services for persons with developmental disabilities. Ten national databases and 24 state databases are profiled. Each profile presents a summary of the types of information collected and how this information can be accessed. Data elements are presented to identify possible linkages or data aggregations across state data collection efforts or to suggest potential comparisons across states. Each database summary includes the following information: sponsor, population included, purpose/relevance, design, periodicity, geographic level, sociodemographic data, services data, publication of data, and contact person. The report also suggests supports that would assist states in improving, utilizing and sharing their data collection systems. Three tables are provided indicating the individual characteristics, functional characteristics, residential service types, and funding source of the different databases. An appendix lists state database contacts. (CR)
characteristics of and service use by persons with MR/DD living in their own homes or with family... more characteristics of and service use by persons with MR/DD living in their own homes or with family members. Here we reexamine employment services and status, personal supports used and needed, professional and mental health services, previous longterm care services, transportation services, preventative health care, and waiting for services. The new component in this Brief is an examination of how service use and needs vary by age (for persons 18-35 years versus persons 36 years and older), gender, and disability group (persons with intellectual and/or developmental disabilities [ID/DD] versus persons with one or more substantial functional limitations who do not meet the criteria of having ID/DD). This Brief uses a series of logistic regressions to examine how the services and support needs vary by age, gender, and disability group after controlling for overall health status, race, and economic status.
This report from the ongoing National Residential Information Systems Project provides statistics... more This report from the ongoing National Residential Information Systems Project provides statistics on persons with mental retardation and related developmental disabilities (MR/DD) receiving residential services in the United States for the year ending June 30, 1996, as well as comparative statistics from earlier years. Section 1 contains chapters on populations of state-operated residential settings in 1996, longitudinal trends in large state-operated residential facilities 1950-1996, large state MR/DD residential facility closures 1960 to 2000 and individual facility populations and per diem rates in fiscal year 1996, and characteristics and movement of residents of large state facilities. Section 2 contains chapters on services provided by state and nonstate agencies in 1996, number of residential settings and residents by type of living arrangement, and changing patterns in residential service systems 1977-1996. Section 3 focuses on the utilization of the Medicaid program to sponsor long-term services for persons with MR/DD. Chapters cover Medicaid long-term care programs; utilization of and expenditures for Medicaid institutional, home, and community-based services; and conversion of Medicaid Intermediate Care Facilities for persons with MR/DD to home and community based services. The last section contains state profiles of selected service indicators 1977-1996. (Contains 50 references, 54 tables, and 23 figures.) (CR)
Intellectual and Developmental Disabilities, Jul 1, 2009
Shortly after the inception of Medicaid in 1965, states began to place persons with intellectual ... more Shortly after the inception of Medicaid in 1965, states began to place persons with intellectual or developmental disabilities in nursing facilities where their care was eligible for federal cost share under Medicaid. Advocates responded, noting that many more people with ...
Uploads
Papers by Charlie Lakin