More and more people with significant disabilities, including ventilator users, are living longer, healthier, independent lives in their communities. A key component in this success is personal care assistance, also called attendant services.

Some conditions that compromise respiratory function also impair mobility and arm and hand movement. Many ventilator users therefore require assistance with managing and using a ventilator. This is where the availability and quality of attendant support becomes critically important. An attendant can perform tasks such as setting up the vent, changing and cleaning tubes and filters, applying a mask, cleaning and suctioning a tracheotomy, and troubleshooting when a ventilator malfunctions.

I use a volume ventilator approximately 20 hours a day. I have spinal muscular atrophy, which significantly limits my physical movement. I rely on my attendants to put on and take off my ventilator, periodically adjust the straps and tubes, thoroughly wash all the components, replace disposable parts, fill the portable liquid oxygen tank that bleeds O2 into the tube, charge the battery that powers the ventilator on my wheelchair, and come help out when the mask slips off or the tubes come apart or the cable gets disconnected.

This is all a very normal, manageable part of my daily life. I attribute this to the fact that I have a dependable team of attendants whom I have hired and trained. In my case, these workers are paid by Colorado Medicaid, under a program called Consumer Directed Attendant Support (CDAS).

Several other states also offer, or are considering offering, consumer direction options to their Medicaid consumers with disabilities. A vast improvement over the traditional home health agency-dominated attendant service delivery model, consumer direction enables people with disabilities to manage their own attendants, including budgeting, recruiting, hiring, negotiating terms, training, supervising, scheduling and, when necessary, terminating workers.

By having such a high degree of responsibility and authority for my support system, I can provide detailed training and oversight on the tasks that are most important to me, such as ventilator care. Consumer direction also fosters a greater sense of accountability among the attendants who come into my home, because they recognize me as their boss, rather than reporting to a nurse or administrator.

Consumer direction programs similar to CDAS are emerging in many states across the United States. Ventilator users who do not have access to consumer direction, and who must operate within the constraints of strict nursing regulations and home health agency policies, often have a more difficult time managing their health and equipment. Some states’ nurse practice acts mandate that ventilator care must performed by a registered nurse (RN), or by a certified nursing assistant (CNA) working under an RN’s supervision.

Such requirements, based on a medical-model view of disability, treat people with disabilities as eternal patients in need of medical oversight. Sometimes, such policies have the effect of denying ventilator users the assistance they need. It’s a Catch-22, where vent care has to be done by a nurse, but agencies don't find it cost-effective to send nurses into someone’s home every day. I've known people who ended up living in nursing homes as a result.

Tight medical regulation of attendant care is usually justified on the grounds of quality control. However, in a number of states, consumers and advocates have demonstrated convincingly that people living with long-term disabilities are quite capable of supervising the care we need. Unlike an acutely ill or convalescing person, we have learned all the ins and outs of our health care requirements, what works and what doesn't, and how to achieve maximum safety and comfort.

If you are a ventilator user who needs personal assistance, you are the best person to ensure quality control. Even if you live in a state with restrictive home care policies, you should assume as much responsibility as you can for managing your support services. Here are a few steps you can take to receive excellent support in taking care of your ventilator-related needs:

1. Learn all you can about your ventilator. You might be able to get some training from your supply company—or you might not. (I’ve found that the quality of respiratory therapy personnel at these companies varies considerably.) When you first get a new device, ask questions and insist on complete answers. Internet research can add more to your knowledge base. You may even be able to download your machine’s clinical manual from the manufacturer’s website. Study any information you can find about your ventilator’s setup, your prescribed settings, cleaning and maintenance, power source issues such as cable connections and battery life, the meanings of different codes and alarms, and any issues involved with your mask or other interface.

2. Translate your expertise into clear, easy-to-follow directions for others. Make a one-page list of instructions, and post it near your equipment. This should also include a schedule for regular cleaning and changing of tubing and filters.

3. Orient all of your personal assistants to your ventilator. Explain the function of each part, how to attach the parts together, what might go wrong with each part, and how to fix things that do malfunction.

4. Find out whether your state offers, and whether you are eligible for, a consumer direction option to allow you to manage your own attendant services. You can call your state Medicaid long-term care agency, or ask your Medicaid case manager. If you receive a negative or an incomplete answer, ask again; politely request to speak to a supervisor until you reach someone who seems to know what they’re talking about. Another good source of information about consumer direction is your local Center for Independent Living, or a local or statewide disability rights advocacy organization.

5. Investigate the applicable regulations regarding in-home ventilator support. Depending on your location and your funding source for attendant services, these rules may come variously from your state or regional board of nursing, Medicaid or other publicly-funded program, your health insurance plan, and/or your particular home health agency. Of course, if you are paying your helpers privately, then you'll have few restrictions to worry about.

6. If you're required to use a home care agency, push nevertheless for as much autonomy and choice in your attendant services as possible. Ask to interview new attendants before they are assigned to your schedule. Offer to help with recruiting workers, by posting ads in your neighborhood, your place of worship, local colleges, community centers, etc. This active involvement in the hiring process will give you more control over your services and more respect from your service providers.

Whatever your attendant care arrangements, adopt the attitude that you are not only the client, but also the boss. You'll get best results if you become thoroughly knowledgeable about your ventilator needs and, within the regulatory limits, exercise the authority to get those needs met.

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