When Your Child is Technology Assisted.

A home care guide for families

Technology is so much a part of everyday life that we often don't give it a second thought. But what happens when technology is a matter of life and death? Now, more than ever, many children's lives depend on technology, and their parents need to become experts. Author Paul Kahn notes; "Only in recent years, have children, whose lives are dependent on medical technology, been able to live at home with their families, instead of needing long-term institutional care." In addition to covering all aspects of the home care situation, from physical surroundings to emotional issues, Mr. Kahn also quotes parents throughout his book which add to the practicality. The following excerpt illustrates how this book will help parents improve the quality of life for their child who is technology dependent.

Chapter 1: Preparing For Your Child's Return Home

If you have a technology-assisted child in the hospital, you are probably eager to bring your child home but also anxious about how to make this transition safe for your child, to prepare yourself for what to expect, and to set up the services and supports that your child and family will need.

Figuring out how to accomplish these goals is called developing a "discharge plan." "We just wanted our daughter home so bad, we knew it was the right thing to do."

Effective discharge planning requires a team approach. Usually either a continuing care nurse or social worker from the hospital is responsible for coordinating the plan. Other members of the team include your childls physicians and specialists ... You are also a vital member of this team and, in some ways, the most important, because without your consent and commitment the discharge plan can not be put into action. You always have the right to state your opinions, voice your concerns, ask for explanations and approve or reject recommended providers and services. The discharge plan has four main parts:

1. figuring out what you and your child will need (often called a needs assessment)

2. training you in your childls care

3. setting up services in the community

4. getting funding for those services

What You and Your Child Will Need

This part of the plan should answer several basic questions. First, what do you need to learn in order to take over the care of your child? You can help by being open about the gaps in your knowledge and skills and how you learn best. For instance, if your primary language is Spanish ... the discharge team needs to know, so they can arrange instructions for you in Spanish. Or, if you have difficulty remembering verbal instructions, you can ask that instructions be written down for you.

Second, how can you get over your anxieties? Many parents have doubts about their ability to learn procedures that only trained professionals perform in the hospital. ... By letting the team know how you are feeling, you can make sure that relieving your anxieties becomes part of the discharge plan.

Third, what equipment and supplies will your child need at home? ... Home care equipment may differ from what your child uses in the hospital. So, a good idea is to try out before discharge date, Fourth, what community-based services will your child be using? These services may include delivery of equipment and supplies, home nursing and rehabilitation. You and the rest of the discharge team will work together to get these services, so tell the team how familiar you are with your local service providers and what assistance you will need.

And, fifth, how safe and convenient is your home for your technology-assisted child and what improvements should be made? ...

Parent Training

... Although this part of the discharge plan has been called "parent training", your child should also participate as much as possible. You can help your child build independence, self-control and self-confidence by assigning specific things to learn in order to prepare for coming home.

The amount of information and skills you need to learn will probably seem overwhelming at times. Other parents and professionals recommended reducing confusion by collecting all important written materials in a loose-leaf notebook. This notebook should contain the following:

* a medical summary

* nursing discharge orders

* an outline of your child's typical day

* medications, including action and use, dosage frequency, way of taking, side effects and storage instructions

* special treatment instructions

* nutritional needs

* instruction on use and maintenance of equipment

* when to call the doctor

* phone numbers of physicians, utility companies (such as gas and electric), the fire department, paramedics, nursing agencies and equipment companies

* home equipment and supply list

* names and phone numbers of contact people at school

* learning needs

Another important tip is to assume responsibility gradually. First, practice your skills in the safety of the hospital. Next, try taking your child out for a few hours. Then bring your child home overnight, if hospital and insurance policies allow. If all goes well, you are probably ready for the move.

Community-Based Services

The next part of discharge planning is organizing services in your community. This includes contacting agencies and people your child will use on a regular basis at home. It also involves giving emergency service providers a basic orientation to your child's medical needs, so they can respond effectively. Services your child might need regularly are the leasing and the maintenance of equipment, delivery of supplies, home nursing, follow-up medical care, and rehabilitation.

Often insurance companies limit the agencies and companies you can use, but you do have some choices. To choose wisely, you must be able to communicate your child's needs clearly and know what you have a right to expect. Companies and agencies that provide the same services are usually in competition with each other and are eager for your business. So, you should approach them from a business frame of mind, as you would if you were interviewing job applicants.

When evaluating a home health agency, make sure that its nurses are licensed and have emergency medical training and experience with your child's medical condition. With equipment and supply companies, the important issues to consider are their ability to respond on a round-the-clock basis to any equipment problems and to be able to make deliveries promptly and accurately.

In choosing any agency or company, getting recommendations from other families who have dealt with similar situations can be very helpful. The hospital or disability-related organizations such as the Easter Seal Society or the Muscular Dystrophy Association can often put you in touch with the families.

To assure proper emergency medical care, your child1s physician should prepare a letter to go with your child on any emergency room visit. The letter should describe your child's special medical problems, baseline data, present treatment, including medications, and names and phone numbers of clinicians who know your child well. Copies of this letter can be kept in your loose-leaf notebook.

The physician or continuing care nurse should also alert utility and telephone companies to your child's special needs for heat, electricity and communication with providers. These companies will then put a priority list for restoring services, if they are interrupted for any reason. Also, the fire department should be notified that you have someone in your house who might need emergency treatment or special help being evacuated. Experienced families recommend that you double-check to be sure all these contacts have been made, because they are so important to your child's safety.

Funding for Home Care

Lack of health insurance, inadequate insurance or limited financial resources can be severe barriers to bringing home a child with extensive ongoing medical needs. Even families who thought they were well covered for catastrophes have found that that their insurance companies can present limits and conditions when a child needs very expensive care.

In many states, families can get help by applying to the Federal Medicaid Program, also known as the Katie Beckett Program. Under this program, an ill or disabled child's income and assets are counted separately from those of the family, allowing the child to qualify for Medicaid benefits. Contact the Department of Public Health or Public Welfare to find out if this program is available in your state.

The cost of this 64 page soft cover book is $10. A free six-page pamphlet called "Setting Up the Home" is also available which contains tips for preparing for a child who is technology assisted. To order, contact: L&A Publishing, Lash and Associates, 708 Young Forest Drive, Wake Forest, NC 27587; telephone [phone]; Web site: http.//www.lapublishing.com.