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Christi Tuleja, MS, OTR
Through The Looking Glass
2198 6th St. Suite 100
Berkeley, CA 94710
#510-848-1112 ext. 119
Assistive technology has enormous potential to provide options for parents with physical disabilities.For some parents it can make the difference between being, as one parent put it, “just an observer of my child’s care- to being the primary caregiver”. For other parents assistive technology can allow them to care for their baby with more ease, less effort or less pain. In both situations adaptive equipment can provide a milieu for the parent child relationship to flourish.
In-depth work is occurring at Through The Looking Glass related to adaptive babycare equipment intervention. I will present a brief background on TLG so that parents and professional working with parents with disabilities and their families can utilize us as a resource. Then I will provide an overview of our work, discussion pertinent research findings and through out my discussion a variety of babycare equipment will be shown.
TLG, a non profit organization, is The National Resources for Parents with Disabilities funded by the National Institute on Disability Rehabilitation and Research. Ouir center is a clearinghouse of resources and information about parents with disabilities.We have an eight-hundred number allowing individuals all over the country to contact us for information concerning pregnancy and birth, adoption, adapted babycare equipment and custody issues. Eighty percent of our staff have personal or family disability experience and we are based in the disability community. Fall of 2001 we will be hosting our 2nd International Conference : Parents with Disabilities and Their Families in the San Francisco Bay Area.
Comprehensive babycare assistive technology work has been occurring at TLG since 1991. TLG has been designing and developing adaptive babycare and providing it to parent’s with physical disabilities in the San Francisco bay area.Through a number of research projects we have examined the impact that adapted babycare equipment can have on parent’s involvement in babycare and also the parent child interaction. Presently, the thrust of our work is the transfer of our equipment to the commercial market so that it can be available to all parents. In addition, we are developing a disability sensitive measure that can assist professionals in identifying parents babycare equipment needs and demonstrate the impact of the equipment on the parent’s babycare functioning for funding and reimbursement purposes. It is estimated that 10.9% of families with children have a parent with a disability, yet, still today there is an assumption that there are few parents with disabilities within our communities. There is also increasing numbers of parents with conditions associated with extended computer use such as repetitive stress syndrome in the wrists and hands. These parents do not necessarily identify as disabled or identify with the disability community, even though this condition can have a considerable effect on babycare ability. Dual income households and the high cost of child care have increasingly placed grandparents in the role of providing child care, and in some situations, full time care of their grandchildren. Grandparents are another growing population that can utilize adaptive babycare equipment, since they may experience weakness, pain or fatigue as they age.
History was made in September of 2000, the state of California was the first state to pass a bill which would allow adaptive babycare equipment to be covered by Medi-Cal. A group called FAMILY in The state of Idaho, have been attempting to remove from current law any inappropriate disability language, build into law protections against discriminatory actions because of a parent’s disability in child custody legal proceedings. Furthermore, are attempting to build into the legislation a support fund that would pay for the necessary services to support parents with disabilities which would included adaptive babycare equipment. This legislation almost passed this year, yet, it is expected to pass next year. These are exciting changes and our hope is that with much education and pressure other states will follow suit. Since babycare equipment on the market falls short in meeting the needs of parents with physical disabilities most babycare equipment needs continue to be met through the ingenuity of parents. Parents have been and continue to be exceedingly resourceful and clever at getting these needs met. It appears that the daily problem solving parents already do in order to meet the inadequacies of their environment in other activities of daily living transfers to babycare solutions. However, resourceful a parent may be, our experience has been that they all would desire the option of having babycare equipment available to them either commercially or through a lending source such as TLG.
The impact of the adaptive babycare equipment has been dramatic in most family situations. Overall, the equipment has decreased the barriers in the parent’s environment, thereby increasing their functional babycare abilities. Consequently, parents’ heightened abilities increased their involvement in performing babycare (e.g., dressing, diapering, carry/moving, holding, transferring, bathing, feeding). In addition, most parents reported decreases in difficulty, fatigue and pain during babycare as result of utilizing the adaptive babycare equipment.Another outcome observed with adaptive babycare equipment intervention is that as babycare tasks become easier parents become less focused on the physical demands of the task and consequently are able to engage in more positive interactions with their babies. Parents have also reported experiencing more confidence as caregivers, an increase in their satisfaction with how they complete babycare tasks and less worry about their child’s safety during the activity. Another findings from our research is that parents will place their own bodies at risk for injury (back and wrist strain) in order to complete babycare tasks and keep their child safe. Adapted equipment allows parents to do babycare in better ergonomic positions thereby reducing their risk of secondary injury or disability.
What aspects of babycare are the most physically demanding for parent with physical disabilities? Obviously, a number of factors can influence the demands placed upon a parent, yet, we have generally found that transitional tasks are the most demanding aspect of the babycare. Transitional tasks are activities such as transfers, carrying and moving and positional changes, which are physical activities that usually begin and end a babycare activity and are the essential links between various aspects of care. When solving transitional tasks obstacles for parents, many babycare activity issues are usually simultaneously solved. For example, if a lifting harness is developed for transferring the baby to the diapering table, the harness can also be used for carrying and moving, can assist with holding, and can be used to transfer the baby to a variety of surfaces.
General recommendations for equipment development:
For many individuals with disabilities becoming a parent can be thought of as the last frontier to conquer with respect to accessibility and equal rights. Babycare assistive technology allows parents with physical disabilities more choices in how they are involved in their baby’s care. TLG will continue to develop and refine babycare equipment and work towards bringing equipment to specialized and generic markets.
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