HELP AT HOME

Baby-Sitting and Child Care

Early in his life, you'll begin entrusting your child's care to others. A few obstacles may arise because of your child's disability, but since boys of preschool age with DMD are still ambulatory, these should be minimal.

Finding a traditional baby-sitter who's up to the task of taking care of a disabled child may be difficult at later stages, but it's not necessarily impossible. If you can find a strong, reliable young person, perhaps one from your neighborhood that you know and trust, and if you're able to invest enough time and money to train this person, you may have a helpful resource that will last for a long time.

If you need care on a day-to-day basis, and if you prefer more structured care in a setting that allows your child to interact with other children, you may wish to choose a child care service.

As your son's physical needs increase, you may wish to hire nurses or assistants to help him with dressing, bathing or positioning.

Places that provide child care, whether they be preschools, child care centers or home-based centers, must meet provisions set by the Americans with Disabilities Act. The ADA requires child care workers to make a "good-faith" effort to include children with disabilities.

Basically, this means that they can't flatly turn a child away due to a disability. Nor can they charge that child's parents more than other parents, even if the center has to make changes, such as modifying the bathroom to accommodate a wheelchair. And they can't refuse a child on the ground that their liability insurance rates may increase.

However, a center can turn a child away if accepting him would impose on the center an "undue financial hardship," such as a modification expense out of proportion to the resources of the center.

Parents have the right to file a complaint with the Justice Department if they feel their child has been unfairly turned away. The Justice Department can fine centers that fail to comply with the ADA.

It may be easier, though, to simply keep looking until you find a center that's right for your child.

More centers now are trying to be "inclusive," putting nondisabled children together with children who have special needs. Research suggests that it may be best for your child's development to be in an inclusive setting.

Home Care

With time, your son's need, and yours, for more specialized help will increase. You may need to help him with basic daily living activities, such as being turned at night to make him more comfortable, feeding, bathing and dressing. It's likely you and other family members will have to do more lifting and transferring of your son to and from the wheelchair, and possibly maintain a ventilator or feeding tube.

At some point in his teens or 20s, you may feel things are getting beyond your ability to handle them alone. First of all, the care required will become more complex, time-consuming and physically demanding. Second, the years of devoting yourself to your son may start to wear on you. When other family matters need attention, when your health or strength begins to diminish, or when you just need a break, there is help available.

This help will usually come in one of three forms: You can be trained to do it yourself, or you can get respite care to give yourself an occasional break.

A third alternative is hiring professional caregivers to work in your home either round-the-clock or part time. This is financially difficult or impossible for most families. So you'll probably want to provide as much care as you can with occasional respite for as long as possible.

Getting Trained

You can ask your MDA clinic team for a physical therapist or nurse to help you learn how to perform specific skills such as proper lifting or respirator maintenance. Food preparation, toileting assistance and use of durable equipment are other skills you can learn.

Another approach is to consult a home care nurse. Call a nursing agency or hospice organization and say you'd like some training in home care. After consulting with your son and his doctors, you'll know what questions to ask. A nurse will come to your home, write up a care plan, and teach you how to do the things your son needs, such as adjusting his ventilator hose and preventing skin breakdowns.

Respite Care

Respite care is designed specifically for families taking care of severely disabled individuals. Respite care refers to a service in which another person takes the role of caregiver for a short time or simply provides companionship for a few hours, allowing the parent or primary caregiver to attend to other tasks or just take a much-needed break.

When arranging for respite care, you should expect that the person providing the care will do everything necessary to keep your son healthy and content while you're away.

Depending on what state you live in, your family may be entitled to receive a number of hours of respite care per month at no cost. (Qualification is determined by need.)

To find out about respite care available through your state, call the National Respite Locator Service or your state's Office for Developmental Disabilities. You might try asking at places of worship or other community centers to see if they have a volunteer pool that offers respite care as a free service.

Even if it's only for a few hours a week, the prospect of having some time off can make a critical difference for the primary caregiver.

In-Home Nursing

The need for some kind of medically oriented home care will become greater as your son's DMD progresses. This need may arise in the very last stages of his life when he has become quite fragile.

Costs for this kind of care can be considerable, and your insurance will most likely have a limit on the amount of home care it will help pay for. You may choose to employ skilled care for a set number of hours per week or during times of medical crisis, depending on your son's needs and wishes and your own stamina and financial resources.

You may find it helpful to arrange for someone to take care of time-consuming tasks such as household chores and grocery shopping from time to time or when your son is hospitalized. Friends, relatives and service groups in the community may be able to help with these kinds of tasks.

Home Care Agencies

A full-service home care agency can help you at various stages of your child's disease. It can provide a variety of professional services, including: evaluation and development of a care plan; nursing; medicating and monitoring; nutrition counseling; rehabilitative and occupational therapy; social services such as help in accessing community programs, evaluation of your financial situation and emotional counseling; and personal care in such areas as hygiene, dressing, bathing and transferring.

To find an agency, look under "home care" or "home health care" in your phone book, or ask your doctor for a referral to a home care agency that he knows and trusts. Consult friends, hospital staff that have cared for your son and the health care service coordinator at your local MDA office. Or check with the National Association for Home Care.

Take the time to make sure you find an agency that has a good reputation and provides the services you need at a reasonable cost. Some agencies are licensed by the state or accredited by national health agencies. (It's possible for an agency to choose not to be certified but still maintain top standards.)

Ask if the home care agency is certified by Medicare and Medicaid. Even if the services you require aren't currently covered by Medicare or Medicaid, you can't be sure how circumstances may change in the future.

Agencies can also provide medical equipment and supplies such as oxygen tanks, hospital beds and accessories, wheelchairs, braces, crutches, catheters and monitoring devices.

Be sure you ask what services are and aren't included. They vary from one agency to another. Make certain your contract spells out what's covered.

Using an agency is more expensive than hiring people on your own, but it does ensure that the people coming into your home have been professionally scrutinized.

If you feel you don't require skilled medical support, you may be better off using a support-care agency. Such an agency generally provides aides to help with personal and household care, but not nursing care, and may be considerably cheaper than using a full-service agency.

Nursing Care

If it's medical help you need, you can arrange to have a qualified nurse or nursing assistant visit your home to perform medical care and generally monitor your child's status. Nurses often work in eight-hour shifts and don't perform general household duties. Nursing services can be expensive but often insurance will help.

Home care agencies are one source for skilled nursing care. Also, skilled medical care and non-skilled care are available through Visiting Nurses Associations.

Hospice services can also be provided in your home during the final months of your son's life.

Hiring Your Own Help

A personal assistant can help your son remain independent.

If you need some backup for your son's daily care, but he doesn't require frequent medical care, another option is to hire an independent home care worker, sometimes called a personal care attendant or personal assistant. In this case, the worker is hired directly by you, with no agency involved.

Among the advantages of hiring a personal attendant yourself are that when it comes to hours and the kinds of tasks performed, the personal care attendant may be more flexible than someone from an agency. You have much more control over the job description and must be very specific in outlining job responsibilities.

Also, you may get more hours of care for your money than if you were paying an agency as a go-between. However, don't expect to get trained help. Many of the people applying for such positions don't have professional health-care backgrounds. You'll have to train and supervise them.

Personal assistants are most appropriate for adolescents or adults who live active lives but require help with chores from driving to dressing. They might also help you do household tasks, but they're not qualified to do the kinds of things nurses do. For many independent adults with disabling conditions who have no family support, the personal attendant option has kept them from having to go into a nursing home.

Personal attendants are obtained through a variety of means, ranging from help wanted advertisements to word-of-mouth.

When no agency is involved, you must take extra precautions to check the background of an applicant. Although it's certainly not the norm, there have been cases of people with disabilities being robbed or abused by attendants.

Have the applicant fill out a detailed job application (available from most stationery stores). Verify all the information by phone. Consult your local police department and the county clerk's office to see if the applicant has had any criminal charges or convictions.

There has been discussion about implementing national legislation concerning personal assistants. The hope is that such legislation will protect the rights both of people with disabilities who want to choose their own care and retain a measure of independence, and of the attendants who need a good wage and decent hours.

Hospitals

If your son, whatever his age, undergoes a hospital stay, ask to meet the professionals who will actually be caring for him. Let them know his needs and preferences.

Before your child checks out of the hospital, the staff should give you follow-through instruction about any nursing techniques, special equipment or medication you need to know about once your child is discharged, and give tips about obtaining any additional help you may require in the home.

You Deserve Help

Not all families feel comfortable at the notion of seeking professionals from outside the family to help care for a child with DMD. Similarly, some don't wish to seek financial or other kinds of assistance provided through government programs, preferring to rely on their own resources.

But the fact is that many parents, including those who aren't faced with a serious condition like DMD, need help from time to time. When you consider the emotional, physical and financial difficulties that may be expected when dealing with a disease as serious as DMD, it seems only logical that parents should accept a helping hand.

And while delegating part of the responsibility for your son's care to someone else may not feel like the most natural thing to do, getting help may make a world of difference in your family's overall well-being.

Similarly, finding out about the range of government and community-based programs that exist may alleviate the "we're all alone in the world" feeling that many families initially experience as the result of DMD. That feeling may gradually be replaced by a sense of pleasant surprise at the number of people out there who really are willing and able to help.

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