A Way Out

For people with disabilities, finding quality attendant care can seemed like a complicated maze, with stress awaiting them at every turn. Thanks to David Jayne, founder of RespiteMatch.com, they just may be able to find their way out.

“In 1987, I was twenty-six years old, and an avid fly fisherman. I tied my own flies, and noticed a loss of dexterity in my left hand. I soon began dropping things with my left hand for no reason. I went to a neurologist, thinking I had nothing more than a pinched nerve,” David explains.

The diagnosis was something far worse—Amyotrophic Lateral Sclerosis, or ALS (commonly known as Lou Gehrig’s Disease), which eventually required David to get around the clock attendant care. “My existence is totally dependent on my caregivers. I am totally paralyzed, ventilator dependent, and fed by g-tube. Still, I am extremely fortunate to be an American and live in the age of adaptive equipment and unbelievable technology. Without it, I would be a dead vegetable. I communicate via an augmentative communication system. Once I am set up in my chair with my laptop, I am fairly independent.”

David quickly found out that the process of finding caregivers would not be easy. “My previous caregiver, whom I found through a classified ad after interviewing dozens of people, was with me for four years, but she left my employ in 2004 to get married. In seventeen years of being disabled, I have hired caregivers from every medium imaginable, including: newspaper ads, personal referrals, nanny services, and expensive agencies. I had moderate success with these methods, but they were always the source of many headaches and wasted time. Being on a fixed income, I have been limited as to who I can hire.”

As his disease progressed, the skills that David required of a caregiver increased. “I began my new caregiver search on the Internet, thinking I would find something like RespiteMatch. I only found classified ad-type postings, which lacked the detailed information needed to save time, make informed decisions and hire the appropriate candidate,” he remembers.

He was determined to do something to change that. “Since childhood, I’ve been an entrepreneur, and my wheels began turning. I thought that, if I experienced these frustrations as a patient, caregivers must go through the same frustrations. In December 2003, the idea came to me to create a platform, much like a singles website, that would connect home health professionals and patients in the home setting.” RespiteMatch was the result of that effort, launched in December 2004.

“RespiteMatch was designed to meet all levels of disability, especially the severely disabled,” David says. Membership to the site is free. However, to effectively utilize the site’s many services, users must subscribe. The fees are as follows: thirty-nine dollars for thirty days, or eighty-nine dollars for ninety days.

One way that the website brings patients and caregivers together is through personal profiles. “It was my plan to begin at the national level and grow to an international service, but patients and caregivers have already made it international. We have developed profiles that have the capability of being extremely detailed, containing the health skills that are either required or possessed,” says David.

For instance, his own profile lists bathing, dressing and undressing, and ventilator care among his physical needs. The personal part of the profile offers a wide range of facts, from his religious affiliation to his preference concerning pets in the house. In addition to a brief account of personal preferences, a caregiver profile outlines a potential candidate’s educational background, work experience and salary range considerations. Both types of profiles are followed a short paragraph describing the person’s expectations to prospective employers or employees.

“If the individual takes the few minutes necessary to complete the RespiteMatch profile, much time and effort can be saved when others review it, because many criteria are available to review at a glance. Once favorite profiles are selected, the individual can select the strongest of the qualified candidates to be hired or the best position can be accepted,” he explains. “Currently, patients can view detailed caregiver profiles and photographs, if provided, at no charge. Patients can become members, again at no charge, and can create their patient profiles, add caregivers to their Favorite List and also view their MatchList. The RespiteMatch MatchList generates matches according to criteria provided in the profiles. It is a time-saver, preventing the individual from having to look through hundreds of profiles. Caregivers possessing those skills will be listed.”

It is his desire to create a one-stop shop that will meet all home healthcare needs. “Most important to me is for RespiteMatch.com to have the capability to avoid the common home healthcare pitfalls both patients and caregivers have endured.” David has had to deal with caregivers not showing up for work, lying and stealing, and has suffered several near-death experiences because of caregiver neglect or incompetence.

He remembers one of these incidents well. “I am a lover of the outdoors and often work outside,” he explains. “A caregiver had not secured the ventilator circuit hose to the trach well after suctioning, and the hose popped off the trach. I began to go inside, but she had closed the door. After I slammed my chair into the door many times, she opened the door. She had been with me several months and could read my lips, and knew the ventilator alarm meant I was not breathing. As she opened the door, with the ventilator alarm screaming, I mouthed “my trach.” She gave me a puzzled look and walked away. By this time, I needed a breath, but I had to remain calm. She casually returned with the letter board. While she was gone, I typed out specific instructions what to do. I survived another day to begin one more caregiver search. I realize that I should never be alone, but it is a risk I choose to take for a few precious minutes of being alone.”

“Patients that subscribe to the RespiteMatch service receive all caregiver contact information, including the use of RespiteMatch's private email and email notification.” Known as the My Mailbox feature, it provides an additional security measure. “For example, if a patient that has subscribed to RespiteMatch would like to email a prospective caregiver, but would rather that candidate not have their personal email address, the patient can email the prospective caregiver through this feature, and RespiteMatch will notify the candidate that they have mail in their My Mailbox,” explains David.

Future services in the works for subscribers including background checks that will encompass DMV and credit checks, education, employment, reference, and professional license verification, checks for criminal and civil records, sex offender checks and more. Each of these measures will require the prospective caregiver’s consent. “You have to be honest and upfront with one another about everything,” he advises. Soon, domestic worker surety bonds will be available, which provide financial protection against domestic worker theft. They are also an added measure of assurance that someone's background is clean, because bonding companies will not bond an individual with a troubled past. It is relatively inexpensive peace of mind.”

In the future, the website’s search capability will be complete, as well. Users will have the ability to search by specific health skills required or possessed. Also, members will be able to search by location with GPS-powered zip code searches. There will be additional fees for searches and surety bonds. “RespiteMatch Plus service will soon be available, and RespiteMatch will take any active role in finding or placing caregivers,” assures David. Eventually, home healthcare products will also be available. The changes not yet in effect should take place later this year.

“Personally, I view my disease as the cards I was dealt in life. I can choose to fold or play. There is never any adventure or excitement in folding, so I play my hand,” David says. Thanks to RespiteMatch, the disabled won’t have to play the game of life alone.

Reprinted with permission from SCI-Life www.spinalcord.org