Abstract
Fostering social inclusion and community engagement for people with intellectual and developmental disability
Christine Clifford, MHP1, Emily Lauer, MPH1 and Larry Tummino, MA2
(1)E.K. Shriver Center, University of Massachusetts Medical School, Worcester, MA, (2)Massachusetts Department of Developmental Services, Boston, MA
APHA 2017 Annual Meeting & Expo (Nov. 4 - Nov. 8)
Friends are important to a person’s overall health and well-being; they offer a sense of belonging, provide support, and can increase happiness. People with an intellectual or developmental disability (IDD) too often are “in” the community but not “of” the community, spending most of their time with paid staff and family members. The Massachusetts Department of Developmental Services (DDS) engaged the Center for Developmental Disabilities Evaluation and Research (CDDER) to gain a better understanding of best practices and barriers to supporting people with IDD to make friends and participate in the community. CDDER conducted ten focus groups and four interviews with self advocates, families, Direct Support Professionals, group home managers, and DDS and provider agency staff. Using Atlas.ti, emerging themes were coded across the data, including: the meaning of friendships, the impact of staff in forming friendships, balancing risk with state regulations and provider rules, and supporting transportation needs. Both formal programs that promote social inclusion such as employment and matching “friends” programs, along with informal practices were identified. With the resulting information, DDS is developing a statewide policy by implementing the focus group findings and identifying expectations for the agency, providers and others who engage with people receiving DDS services. Expectations will include: a person centered approach to inclusion; procedures to balance risk with opportunities; training of support staff; organizational policies and practices that ensure individuals develop friendships in the community; DDS regulations and provider policies to promote social inclusion; and new strategies to enhance transportation options for individuals.
Conduct evaluation related to programs, research, and other areas of practice
Abstract
Adaptive Parenting Strategies used by Mothers with Physical Disabilities during Postpartum
Monika Mitra, PhD1, Robyn Powell, PhD, JD1, Linda Long-Bellil, PhD, JD2, Suzanne Smeltzer, Ed.D. RN, ANEF, FAAN3 and Lisa Iezzoni, MD, MSc4
(1)Brandeis University, Waltham, MA, (2)University of Massachusetts Medical School, Shrewsbury, MA, (3)Villanova University College of Nursing, Villanova, PA, (4)Massachusetts General Hospital and Harvard Medical School, Boston, MA
APHA 2017 Annual Meeting & Expo (Nov. 4 - Nov. 8)
Background: Despite the increased attention by policymakers and practitioners concerning the needs and experiences of parents with disabilities and their children, information on adaptive parenting strategies is sparse. Moreover, there is limited understanding by clinicians on how to support parents with disabilities in their caregiving role. The purpose of this study is to examine the adaptive strategies used by mothers with physical disabilities during the postpartum period.
Methods: This qualitative study included interviews with US mothers with a range of physical disabilities who had a baby within the past ten years (N = 25). Semi-structured telephone interviews were conducted by one member of the research team. Interviews were audio-recorded, professionally transcribed, and coded using content analysis.
Results: Analysis revealed that mothers with physical disabilities utilize a range of adaptive parenting strategies to complete parenting activities. Specifically, mothers with physical disabilities reported (1) purchasing or modifying babycare equipment, (2) adapting their home environment, (3) advance planning and preparation, (4) modifying their mobility equipment, (5) using varying transportation modes, (6) developing communication strategies, and (7) receiving assistance from others. However, some mothers reported frustration by the lack of available supports and accessible baby equipment as well as information on parenting strategies for new parents with physical disabilities.
Conclusion: This study sheds light on adaptive parenting strategies by mothers with physical disabilities. The findings from the study suggest the need for more availability of supports and equipment for mothers with physical disabilities as well as information for prospective mothers with disabilities.
Advocacy for health and health education Implementation of health education strategies, interventions and programs Public health or related organizational policy, standards, or other guidelines Public health or related research
Abstract
Piloting Inclusive Early Childhood Development in Nairobi’s Slums: The Case for Engaging Young Adults with Intellectual Disability
Leia Isanhart1, Deirdre McCormick and Susan Masila3
(1)Catholic Relief Services, Baltimore, MD, (2)Special Olympics Kenya
APHA 2017 Annual Meeting & Expo (Nov. 4 - Nov. 8)
In Africa, early childhood development (ECD) services for children with intellectual disability (CID) are limited, hindering long-term growth. Jobs for young adults with intellectual disability (ID) are also sparse.
From 2014-2016, Catholic Relief Services and Special Olympics Kenya piloted an ECD program for 270 CID across 8 sites in Nairobi’s informal settlements. Sites received Special Olympics’ Young Athletes Sports Activity Guide and play equipment for twice-weekly inclusive play sessions. Physiotherapy was provided, and caregivers received positive parenting, nutrition, and hygiene education. Community health volunteers (CHVs) and social workers provided home visits to reinforce ECD messages and facilitate health and social service referrals. Eight Special Olympics Athlete Leaders (ALs), young adults with ID, received training and stipends to deliver ECD services, including mentoring children. One AL supervised the other seven.
Eighteen key informant interviews were held with caregivers, teachers, and CHVs. ALs and caregivers participated in two focus groups. Discussions explored what children and parents gained from AL participation, how parent-child relationships changed, and satisfaction with their involvement in the program.
ALs’ participation in the program gave families hope, motivated parents to be consistent in how they support their children, and taught parents to explore children’s talents rather than focus on challenges. ALs helped parents to practice positive parenting and modeled healthy interactions, limiting corporal punishment. Children responded more positively to instruction from ALs than parents. ALs gained employment and a sense of meaningful engagement, dignity, and fulfillment.
ALs can effectively support ECD services, with gains for children, parents, and ALs.
Implementation of health education strategies, interventions and programs
Abstract
Palliative care training needs of direct care workers in rural and suburban areas
Jinsook Kim, PhD, MPH, DDS1 and Jennifer Gray, PhD, MPP, BA2
(1)Northern Illinois University, De Kalb, IL, (2)Northern Illinois University, DeKalb, IL
APHA 2017 Annual Meeting & Expo (Nov. 4 - Nov. 8)
Aims: Direct care workers (DCWs) serving people with intellectual and developmental disabilities (PWIDD) are likely to provide palliative care, as greater numbers of PWIDD experience life-threatening illness as the population ages. DCWs, however, tend to exhibit low levels of efficacy in providing palliative care and have inadequate palliative care training. The focus of this study was to examine palliative care continuing education needs of DCWs in northern Illinois.
Method: DCWs or managerial staff (n=153) completed a survey on paper or online regarding palliative care training experience, perceived needs for palliative care training, and demographic information.
Results: The majority of the sample were female (86%), White (61%) or African American (34%), DCW (56%), and in rural areas (59%). On average, participants were 41 years old and worked for 10 years in the field. Staff in rural areas were less likely to have received training than those in suburban/urban areas (p < .001). Managerial staff expressed the need for palliative care training more than DCWs (p < .01). The least-trained areas were legal matters, unique hospice care needs of PWIDD, and logistics after death. The most needed training areas were psychosocial needs of PWIDD, cultural competence to effectively communicate with family members from diverse backgrounds, and logistics after death.
Conclusion: The results indicate a lack of palliative care training for staff serving PWIDD in rural areas. Training areas needing more attention include: legal issues, hospice care needs of PWIDD, psychosocial needs of PWIDD, cultural competency, and logistics after death.
Other professions or practice related to public health Public health or related education