Background: Patients with profound intellectual and multiple disabilities (PIMD) cannot clearly express themselves. Therefore, tacit knowledge (TK) is crucial in caring for individuals with PIMD, while it possibly also plays a significant role in medical consultations. Method: A qualitative inductive, thematic analysis was performed of 14…

Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. Method: We conducted a mixed methods study,…

Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method: We interviewed 27 parents of persons with PIMD and analysed the data…

Families with a child with profound intellectual and multiple disabilities (PIMD) have to manage the child's pervasive support needs. To ensure that families are able to manage these needs, they should be properly supported. However, knowledge about the specific support needs of these families is sparse and fragmented, nor is it known if and which…

Since March 2020, when the worldwide COVID-19 pandemic hit, education in the United States has undergone significant change. As both a deaf professional in deaf education and as the parent of an OHKODA (only hearing kid of deaf adults) teenage son, a deafdisabled tween son, and deaf elementaryage fraternal twin sons, I have been in the unique…

Although discussions around family support in early intervention and early childhood special education have often been framed to include all caregivers, recent research suggests that, in practice, professionals most often interact with children's mothers, and that fathers have been left feeling like the "odd man out" (Mueller &…

Background: Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods: A mixed method study was performed including qualitative data from interviews with 11…

This inquiry examines the school career of a student with severe and multiple disabilities, who was fully included with chronological peers in general education classes from first through twelve grades. The student is now a successful student at a university. This study occurs within the historical context of federal, state, and local school…

The mother of a multiply handicapped child relates how her attitude and approach to life changed from being passive to that of being assertive in obtaining services for her daughter. Initial reactions upon hearing of her child's handicaps are recounted, and steps to take in dealing with professionals are considered. (SBH)

A cold bath was used as the aversive consequence in the therapeutic modification of nocturnal enuresis in two male siblings (one multiply handicapped, one normal). (KW)

The mother of a child with spina bifida recounts her difficulties in trying to obtain services for her disabled son. She touches on such topics as her feelings on being told her infant was disabled, treatment by medical personnel, reactions of family and friends, home therapy with the Doman Delacato patterning program, testing and evaluation,…

Described is the parent involvement model at the Home for Crippled Children in Pittsburgh, a center for multiply handicapped urban preschoolers. It is explained that the model is comprised of three components: Parents as Partners (parent training), Community Liaison (home visitation), and the educational and Home Prescription Plan (individualized…

A psychologist discusses efforts at the Boston Center for Blind Children to help parents adjust to the demands of their multiply-handicapped, visually-impaired children. The following programs are found to be helpful: an infant home visiting program (see EC 062 470)in which parents develop their role through participating in an individualized…

The booklet, one of a series of guides developed by Project STEPS (Steps Toward Effective Production of Speech), presents information for parents and deaf-blind children. Total deafness and blindness and the problems of deafness and blindness are considered, as are the nature of deaf-blindness and its special problems (e.g., eating problems,…