Community Group Homes Research Articles

Presidential address, 2014-embracing complexity: community inclusion, participation, and citizenship.

A couple of years ago, Mike Wehmeyer set a new precedent by issuing the presidential address at the beginning of his term, rather than at the end. So, thank you Mike for establishing this tradition—I am sure that I will like it more in about 30 minutes—and thanks to all of you, who stayed to the end of the conference, for the opportunity to speak to you this afternoon to deliver my presidential address, Embracing Complexity: Community Inclusion, Participation, and Citizenship, and to serve your organization in a leadership role. It is such an honor to be here today among so many people that I consider esteemed colleagues and dear friends. I am certainly humbled by this opportunity and, frankly, a little intimidated to be speaking to a group of such distinguished leaders in the field of intellectual and developmental disabilities (IDD). My path to the American Association on Intellectual and Developmental Disabilities (AAIDD) was pretty simple. I was working for a provider organization and one of my colleagues came back from an AAIDD Minnesota meeting and mentioned planning the upcoming state conference. I told her that sounded interesting, and she invited me to the next meeting. I have been involved since that time and have always found AAIDD to be my professional home because of its multidisciplinary focus on IDD. My path to this organization should be a reminder to all of you that all it takes is a simple invitation and people respond and become engaged. I urge each of you to invite at least one of your colleagues or friends to join AAIDD. As a good steward of the role of incoming president of this organization and this task of putting together these thoughts, I did my homework. Thanks to Maggie Nygren’s help, I was able to read presidential speeches in every decade since this organization began. I started with 1894 and ended by reading every speech that I have listened to in the 20+ years I have been a member. My purpose for this task was to understand a bit of AAIDD history and to look for trends and themes that relate to the topic of my address, Embracing Complexity: Community Inclusion, Participation, and Citizenship. I can unequivocally report to you that this organization has been wrestling with these issues since its beginning; certainly in different time periods and contexts but, at the root, very similar issues. In preparing, I also consulted with living past presidents of the association to learn from them what they perceived as the most complex issues we face in the contemporary field. Now, I have to admit, part of this exercise was to validate that I was not way off base in the complexities I thought existed and planned to include in my address. To my surprise, nearly all of the living past presidents who responded to my request had remarkably similar ideas about the complexities we face, and, luckily for me, I was not way off base. Most importantly, as I prepared, I reflected on and consulted with the people with whom I have worked and learned from throughout my career who live with disabilities. Their voices and our shared experiences will certainly be heard throughout my remarks. Lastly, I consulted with the Merriam-Webster dictionary to ensure that I had a clear understanding of the words I selected for the conference theme. I was initially a bit overwhelmed and stunned at the amount of advertising that was occurring as I was consulting the online dictionary, and I was simultaneously fascinated by how this advertising changed depending on the word I was searching for. It is truly fascinating. This complex marketing was a lesson for me in the remarkable changes that have occurred in our culture since I have been a member of this association and a lesson in the power of marketing and advertising. However, as a quick reminder, or perhaps as a mini-lesson to you, here’s what Merriam-Webster had to say about the conference theme. INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

The impact of individual and organisational factors on engagement of individuals with intellectual disability living in community group homes: a multilevel model.

Being engaged in daily activities is a strong indicator of quality of life for individuals with intellectual disability (ID) who live in small community group homes. This study aimed to identify individual and organisational factors that predict high levels of engagement. Individuals with ID (n = 78), direct support professionals (DSPs; n = 174) and supervisors (n = 21) from 21 US group homes participated in the study. For each individual with ID, we conducted 80 min of observation at the person's residence. Information was also gathered regarding demographic characteristics, DSP competence, supervisor years of experience and management practices. Data were analysed using multilevel modelling. On average, individuals were engaged in social activities 12% of observed time and non-social activities 35% of the time. Individuals with greater adaptive skills who were supported by more competent staff showed significantly higher levels of social engagement. Individuals with less severe deficits in adaptive behaviours and less challenging behaviour showed higher levels of non-social engagement. Although none of the factors related to group homes were significant, 24% of the variance in non-social engagement existed among group homes. These results suggested that engagement is a dynamic construct. The extent to which an individual with ID is engaged in daily life is a result of interplay between the individual's characteristics and the group home environment. Future research is needed to investigate the influence of variables specific to the group home on the engagement level of individuals with disabilities.

Use of Prevention and Prevention Plus Weight Management Guidelines for Youth With Developmental Disabilities Living in Group Homes

Introduction: Prevention and Prevention Plus strategies for weight management were implemented for youth with developmental disabilities living in community group homes at a Midwestern educational/residential center. Methods: Caregiver staff were provided with weight management education, a communication tool for youth weight indices, weight and physical activity goals, dietary orders, and monthly follow-up communication. This 4-month study examined changes in weight indices, nutrition, physical activity, and staff perceptions of youth status using t tests, v tests, and Wilcoxon signed-rank tests. Elizabeth F. Gephart, DNP Graduate, Saint Louis University, Saint Louis,MO, andAssistant Professor,MillikinUniversity, Decatur, IL. Deborah G. Loman, Assistant Professor, Saint Louis University,

Making Life Work: Freedom and Disability in a Community Group Home

Making Life Work: Freedom and Disability in a Community Group Home

Changes in the provision of residential care for adults with an intellectual disability: a national longitudinal study

PurposeThe move from congregated living arrangements to more homely, community‐based accommodation is a policy objective in many developed countries but its implementation is rarely monitored. This paper aims to address this issue.Design/methodology/approachThe National Intellectual Disability Database in Ireland provided the data to explore the changes in provision that occurred from 1999 to 2009 for nearly 8,000 adults resident in either congregated or community‐based accommodation.FindingsOver the ten years, there was a marked rise in the numbers living in community group homes and by 2009 just under 50 per cent of persons resided in community settings. Although there was a reduction in the number of places in congregated options over the decade, this was not uniform in that increased numbers of persons were living in new forms of congregated provision designated as specialist units. Moreover, the estimated annual turnover of 2.4 per cent vacancies per annum meant that nearly half of the new admissions were to congregated settings. Over the ten years, a few people moved to a different type of accommodation although more people moved from congregated to community settings than vice versa. A few moved to more independent living arrangements. Despite unprecedented increased investment in services in this period, on average only 70 new places were created per annum – a 1 per cent increase on total places.Research limitations/implicationsOutmoded models of residential provision are likely to persist unless there is sustained investment in new forms of provision largely through a planned transfer of resources.Originality/valueThis national study illustrates how policy changes could be monitored in other countries.

Use of Prevention and Prevention Plus Weight Management Guidelines for Youth With Developmental Disabilities Living in Group Homes

IntroductionPrevention and Prevention Plus strategies for weight management were implemented for youth with developmental disabilities living in community group homes at a Midwestern educational/residential center. MethodsCaregiver staff were provided with weight management education, a communication tool for youth weight indices, weight and physical activity goals, dietary orders, and monthly follow-up communication. This 4-month study examined changes in weight indices, nutrition, physical activity, and staff perceptions of youth status using t tests, χ2 tests, and Wilcoxon signed-rank tests. ResultsA significant decrease in mean body mass index percentile was found (t(39) = 2.93, p < .01, 95% confidence interval 1.29 to 7.04) that was primarily from change in the healthy weight category. More than 80% of the 40 youth achieved their weight goal. A significant improvement in daily fruit consumption ( p = .001) and vegetable consumption ( p < .001) was reported. DiscussionThese prevention strategies are useful to promote staff understanding of dietary goals for weight management in youth with developmental disabilities living in group homes and should be incorporated into practice by health care providers. Additional efforts are needed to increase physical activity during the winter months.

Jack Levinson, Making Life Work: Freedom and Disability in a Community Group Home

Jack Levinson, Making Life Work: Freedom and Disability in a Community Group Home

Challenges Associated With Establishing a Token Economy in a Residential Care Facility

This case study describes challenges associated with the authors’ ongoing efforts to institute a token program in a residential foster care facility. This privately funded facility houses children and adolescents in a community group home format. Inadequate or neglectful parenting is the most common circumstance accounting for the children’s placement. Adjustment problems and oppositional behavior in the residential cottages prompted the facility to contract for consultative psychological services. Consultants spent approximately 20 hr a week in the facility observing resident–caregiver interactions, designing a comprehensive token program targeting inappropriate child behavior, and training and monitoring implementation of the program. Although facility staff reported a desire to learn how to manage better the residents’ oppositional and defiant behavior, and were heavily involved in development of the token program, they exhibited resistance to and noncompliance with the token program as soon as it was put into place. In addition to discussing these difficulties, suggestions for promoting an effective token intervention within this type of setting are discussed.

Healthy eating in persons with serious mental illnesses: Understanding and barriers.

To explore the understanding of a healthy diet and the barriers to healthy eating in persons with serious mental illnesses. In-depth semi-structured qualitative interviews about health behaviors were conducted in 31 individuals with serious mental illnesses. Participants were recruited from a mental health center in Chicago, Illinois, and ranged in age from 30 to 61 years old. Most participants described healthy eating as consuming fruits and vegetables, using low fat cooking methods, and limiting sweets, sodas, fast food, and/or junk food. Internal barriers to nutritional change included negative perceptions of healthy eating, the decreased taste and satiation of healthy foods, difficulty changing familiar eating habits, eating for comfort, and the prioritization of mental health. External barriers were the reduced availability and inconvenience of healthy foods, social pressures, and psychiatric medication side effects. This study revealed several modifiable barriers to healthy eating. Interventions that addressed these could aid in improving the diet and lowering the risk of cardiovascular disease in this population. Recommendations are to provide healthy eating education that is individualized, emphasizes the health consequences of poor eating, and provides opportunities to prepare and taste healthy foods. Family and friends should be included in all educational efforts. At community mental health centers and group homes, only healthy foods should be offered. Lastly, practitioners should encourage eating a healthy diet, inquire about eating in response to emotions, and explore the impact of psychiatric medications on eating behaviors.

Jack Levinson, Making Life Work: Freedom and Disability in a Community Group Home

Jack Levinson, Making Life Work: Freedom and Disability in a Community Group Home

Expenditure Patterns for ICF/MR and HCBS Long-Term Supports for Persons With Intellectual or Developmental Disabilities: Fiscal Years 2004–2009, With Projections to Fiscal Year 2012

Expenditure Patterns for ICF/MR and HCBS Long-Term Supports for Persons With Intellectual or Developmental Disabilities: Fiscal Years 2004–2009, With Projections to Fiscal Year 2012

Changes in coronary heart disease risk profile of adults with intellectual disabilities following a physical activity intervention

Regular physical activity is one of the modifiable risk factors for coronary heart disease (CHD). With an increasing age profile and similar patterns of morbidity to the general population, persons with intellectual disabilities (ID) and their caregivers would benefit from data that indicate CHD risk factors. Knowledge of the CHD risk factors and the changes a physical activity intervention may have on theses risk factors will facilitate future intervention programmes. A cohort of 100 men and women between the ages of 21 and 73 years with ID living in a community group home in the North-West Province of South Africa was recruited. A CHD risk profile was compiled by means of a questionnaire and physical assessment that included resting blood pressure, body mass index, non-fasting glucose and cholesterol and cardiorespiratory fitness. A 12-week physical activity intervention was then conducted 3 days/week after which the baseline measurements were repeated. The results indicated that 85% of the participants were inactive, while 67% were overweight and obese. Hypertension (6.1%) and smoking (6.1%) were relatively low in this population with ID. Glucose concentrations above the recommended cut-off values were observed in 28% of the participants. Total cholesterol concentrations above normal were measured in 23% of the participants. The physical activity intervention reduced inactivity to 50% and resulted in a significant increase in cardiorespiratory fitness and a decrease in percentage body fat in both men and women. Inactivity is a major risk factor in this population with ID living in a community group setting. The implementation of the physical activity intervention significantly reduced the risk factors for CHD.

Beyond treatment of individual behavior problems: an effective residential continuum of care for individuals with severe behavior problems

AbstractWe report on one component of a residential continuum of care designed to integrate children and adolescents with severe behavior problems into community residential and educational placements. The continuum featured three components: a behavior stabilization unit, campus apartments, and community group homes. Data are reported for a 5‐year period, during which 116 children and adolescents were admitted to a behavior stabilization program for treatment of severe self‐injury, aggression, and/or property destruction, and non‐compliance. Additional problems for some admissions included stereotypy, feeding disorders, sleeping disorders, seizure disorders, and other medical conditions. Archival data were collected retrospectively on age, gender, length of stay, prescribed medications, function of problem behaviors, acuity level of behavioral interventions, and discharge site. Analysis of data indicated (1) the behavior stabilization unit was successful in reducing occurrence of severe behavior problems, and increasing adaptive behaviors, (2) Seventy‐three individuals were able to successfully transition to a campus apartment program that had been designed as a step‐down program from the behavioral stabilization unit, and (3) Sixty‐seven individuals were able to transition to community group homes. The benefits of a residential continuum of care for individuals with severe behavior problems are discussed. Copyright © 2007 John Wiley &amp; Sons, Ltd.

Obesity and Its Related Health Problems in People with Intellectual Disabilities

Abstract Obesity and its related health problems in people with intellectual disabilities were examined, focusing on differences related to their place of residence. The prevalence of obesity was higher in older women living in community group homes than in the same age group of women living in institutes or among the general population. Hyperglycemia, dyslipidemia, and hypertension were less common in people with intellectual disabilities, especially among people living in institutes when compared with people living in the group homes and with the general population. Abnormal liver tests and hyperuricemia were found more in younger men; these may have resulted from obesity as well as some other clinical factors related to their intellectual disabilities.

Surviving the Tornado of Mental Illness: Psychiatric Survivors' Experiences of Getting, Losing, and Keeping Housing

Surviving the Tornado of Mental Illness: Psychiatric Survivors' Experiences of Getting, Losing, and Keeping Housing

Open Forum: Surviving the Tornado of Mental Illness: Psychiatric Survivors' Experiences of Getting, Losing, and Keeping Housing

This qualitative study explored experiences of psychiatric consumer-survivors related to housing. Nine focus groups involving 90 people were conducted in urban and rural areas in South-Western Ontario. A set of open-ended questions was used. Many participants described a devastating experience of losing much of what was important to them and going through a long arduous process to rebuild their lives. Group discussions were audiotaped and transcribed. Individual and team analyses of the transcripts revealed that psychiatric survivors experienced three levels of upheaval, loss, and destruction, similar to the effects of a tornado: losing ground, struggling to survive, and gaining stability. Within each of these levels, five major themes were identified: living in fear, losing control of basic human rights, attempting to hold onto and create relationships, identifying supports and seeking services, and obtaining personal space and place. A caring community response, including adequate housing, income support, and community care, can help people rebuild their lives.

Improving evaluation of psychotropic medication for adults with developmental disabilities living in community settings

AbstractWe evaluated the effectiveness of a series of staff management and training interventions to increase the use of objective data collection in the evaluation of psychotropic medications. Participants were 110 direct care staff, and 19 supervisors. Individuals served were adults with developmental disabilities who were residing in community group homes and apartments. Baseline data were collected on (1) staff data collection, and (2) graphing data for behavior problems directly related to the prescription of psychotropic medications. Following two ineffective antecedent interventions, didactic staff training was instituted in a multiple baseline across data collection and graphing. When staff training was followed by direct feedback to first line supervisory staff, both data collection and graphing increased. A subsequent maintenance condition, in which feedback was thinned, was effective in maintaining increased data collection and graphing. Copyright © 2006 John Wiley &amp; Sons, Ltd.

Adults with Down Syndrome and Alzheimer's Disease

An increasing number of people with Down syndrome are at risk of dementia resulting from Alzheimer's disease. Many reside in community group homes. When they are affected by dementia, the challenge to agencies providing group homes is how to best provide continued housing and provide effective dementia-related care management. In the general population, long term care is typically provided in nursing facilities, often in special care units (SCUs). This study evaluated select factors found in group homes and SCUs to determine which is able to provide a better quality of life for people with Down syndrome affected by dementia. Interviews, using quality of life indicators, were conducted at 20 sites, equally selected from group homes and SCUs, on the basis of their experience with people with dementia. Results indicate that group homes can provide conditions associated with better quality of life and, additionally, operate with lower staffing costs due to the non-utilization of medical staff.

Dementia-Related Care Decision-Making in Group Homes for Persons with Intellectual Disabilities

Alzheimer's disease and related dementias affects a significant number of adults with intellectual disability (ID), in particular those with Down syndrome. Many affected adults live in small community group homes or with their families. How to provide sound and responsive community care is becoming a challenge for agencies faced with an increasing number of affected adults. This study reports the outcome of a survey of group homes serving adults with ID and dementia, explores the onset, duration and effects of dementia, and speaks to the impact of these on planning for community care of adults with ID. It also examines emerging community care models that provide for “dementia capable” supports and services. Two models, “aging in place” and “in place progression” are examined, as well as “referral out” reactions, with regard to care practices and critical agency decision making. A programmatic approach, the ECEPS model, for responding to dementia is offered.

Provision of residential services for people with intellectual disability in Australia: an international comparison

National data on the provision of services to Australians with a disability under the Commonwealth/State Disability Agreement (CSDA) have been gathered since 1995 using the Minimum Data Set (MDS). This paper analyses MDS data on residential services for people with intellectual disability between 1995 and 1999. Notable national trends include: (a) a steady growth in the number of recipients of CSDA-funded residential services; (b) a slow but consistent decline in the proportion of people housed in large residentials; (c) a gradual increase in the number of people served in community group homes; and (d) a more rapid growth in outreach/drop-in services such as semi-independent living. Population-adjusted comparisons with residential provision for people with intellectual disability in England and the USA showed that these countries provided between 22 and 71% more places per person than Australia. There appears to be an urgent need in Australia to increase the provision of residential services to people with intellectual disability.