More MS news articles for August 2000

Agency Offers Solutions for Parents with Disabilities

By Lisa A. Goldstein

Amy J. Rogers Farland was anxious. Pregnant with her third child, the 36-year-old Merrimack, N.H., resident had a new challenge this time around. Now a walking paraplegic, she wasn't sure how she would adapt to a newborn. How would she nurse the baby? What kind of crib could she use?

Being a modern woman, however, Rogers Farland got on the Internet. She typed "paraplegic" and "pregnancy," and found a link to Through the Looking Glass, a Berkeley, Calif.-based national agency that serves parents with disabilities. There she discovered a new catalog, Adaptive Baby Care Equipment.

"When I found this," Rogers Farland says, "it was a blessing."

The name of the catalog says it all: It is about guidelines, prototypes and resources for adaptive baby care equipment.

The ideas emerged over time, according to Anitra DeMoss, 51, project director. They came from working with parents with disabilities and with professionals such as occupational therapists. Federally funded research products helped develop the prototypes.

Through the Looking Glass (TLG) had several goals in mind when creating this catalog. "One purpose is to provide visual images for people to see that parents with disabilities can come up with solutions. The visual is important; we find it to relay a 'can do' attitude," says Kris Vensand, 42, one of the writers.

Prototypes Help Parents Do It Themselves

Indeed, Rogers Farland found the pictures and design very helpful. Prototypes range from a baby seat attachment for a power wheelchair to diaper finger loops. A description of each is given, along with the target user.

Another goal is to get people thinking about possible solutions to baby care for parents with disabilities. "Not enough attention has been paid to this need," DeMoss says. "Baby care equipment on the market may work for some parents for some activities but might need modifications. In addition, there is a great need to develop and put on the market adaptive baby care equipment that will serve the needs of parents with disabilities. Some of these prototypes would be great for all parents because they make baby care easier."

Unfortunately, the parents with disabilities market has been ignored by manufacturers, DeMoss says. No market analysis that would tell manufacturers about the need for this equipment has been conducted. TLG is talking with some manufacturers about producing some equipment.

When possible, the catalog lists commercially available baby care products that may assist parents for less money than it would cost to design new equipment. Appendixes include contact information for manufacturers and baby care equipment catalogs. No prices, estimated or otherwise, are supplied in the book.

Vensand says the commercially available equipment featured in the catalog is comparable in price to other baby care equipment. The costs for adaptations can range from a $12 strap to a $150 safety pad. "(The cost) depends on how much you're able to use off the shelf and varies depending on the complexity of the equipment," says Vensand.

Adaptations for All Budgets

If the equipment featured is not yet commercially available, the solution is to make it yourself. Of course, not every parent with a disability has the resources or ability to do so. For this reason, a list of people or fabricators that can make the equipment is provided.

To get an idea of how much work is involved, Vensand describes one product: adapted walking security straps. TLG went to REI, the outdoor supply store, bought some straps, then had a shoe repairman sew Velcro on them. Vensand estimates the total cost to be between $15 and $20 dollars.

Some items, like a docking system and baby care tray, can cost as much as $1,000, which may be beyond the reach of many parents. "But when you consider that you can carry, move, feed, play and diaper a child on it fairly independently, it makes up for the cost of other baby care equipment that you might have tried to use," says Vensand.

The catalog currently focuses on parents with physical disabilities, such as wheelchair users, but TLG plans to publish catalogs focusing on parents with other disabilities such as blindness and deafness as soon as funding becomes available.

The book is $30, but for people who have difficulty paying that amount, it is $15. It is being disseminated mainly through its newsletter, for which they have a huge address database. TLG also hopes that obstetricians and pediatricians will purchase copies. Libraries requested copies of its last catalog, and TLG expects the same this time around.

Rogers Farland has only one complaint: She wishes there were design blueprints.

She was able to find the nursing pillow featured in the book, along with an over-the-shoulder bunting-like carrier for nursing. Her main concern was adapting a crib so she wouldn't have to stand up in the middle of the night to retrieve her baby.

But the book, she says, "has helped a lot with the frustration. It also gave me a lot of new ideas. The crib has not been adapted yet but will be very soon. It looks like it will work out great."