Erin's mom called the office one day a few years ago. She was stressed, the world was closing in around her and she needed some immediate assistance. Erin's behavior was out of her family's control and respite help was taking far too much effort to be of any value. Each tomorrow brought the promise of greater problems with very few solutions. It was the kind of call every agency who is dedicated to advocating for families wants to respond to with an effective and lasting plan.
We are fortunate to have, as part of our administrative team, an individual who lives for chaos. We were able to use her energy and skills in developing a futures plans to help create order where little existed. Within a few days, a date was set to complete a PATH plan (a futures plan methodology). A meeting was held with the family to create a visual PATH plan of: where the family was, where they wanted to go (short and long term), and who they wanted to recruit to help get them there. It wasn't a clinical intervention, but a set of steps the family felt they could take to reach practical solutions and help them cope with their realities.
Luck was with us all when this same family was fortunate to be chosen to participate in, what we in Connecticut call, the "Waiting List Pilot." It follows a simple premise that, maybe better solutions can be found when families are empowered to purchase only the services they want and need. The fact that they had a workable plan probably enhanced their inclusion in the project. In the end, SARAH Tuxis took on a very nontraditional role of helping the family "broker" their grant. We helped them prioritize what they wanted and worked up a budget for each item. We helped them select the best people for those services. In some cases we put our skills on their list of resources to choose from, in others we gave them names of other agencies and individuals who we felt would do a good job for them. We gave them information with which to make their choices. We were no longer the agency providing services. We were a resource they could use to reach their own conclusions and chart their own course. They're now into their second year of this program. The only real change from the first year is that they've asked us to manage the personnel work for them. Now, we hire and train staff who do their respite work for them. They still make the final decision about who is most compatible to work with Erin. They get all of the choices, but don't have the headache of recruiting staff and filling out tax forms. They are no longer personnel managers, now they are back to being mom and dad.
Mark just turned 21 and typical of the challenges he throws our way daily, he announced that now he could start drinking alcohol. Mark stands about 6 foot 4 and weighs around 250 lbs. His size and constant challenges are parts of a larger paradox. Like so many people his age Mark is fully aware of the trouble he causes himself. This insight is both appealing and frustrating. We began supporting him 4 years ago after lengthy negotiations with our funding agent and his family. It was a difficult decision for us to make to become involved in helping him. He had similar qualities to some of the people we supported but was younger than most and tested limits a great deal more than anyone else we knew. He had been dismissed from one agency and his parents were demanding he be pulled from a second. There were mixed reports on his use of illegal drugs, suicide attempts and gang associations. A bad crowd or a decision of his own? We didn't know. Our journey with Mark has been full of surprises; a suicide attempt and a pregnancy that ended in miscarriage among the most noteworthy. Our strategies have been varied and creative as his behavior required. We had, as one might expect, some staff turnover particularly after the suicide attempt. It scared people. At one point Mark had a cadre of about 12 people who are working together well with him. They were in constant touch with his parents and each other. After a long period of gaining and losing jobs Mark has maintained a job for an extended period. This was the first area of his life he mastered. Today Mark has but a few staff and has a confidence about his life that we could have only imagined possible when we started together. We have both made progress, Mark and his staff. We hope that the steps taken forward will help each of us have confidence in the future and the potential it can continue to bring.
Carey is 31 years old and lives with two other house mates in a group home. They have lived together for several years. Each of them are living very full and active lives despite facing significant physical and intellectual challenges. It would be easy to say that the high quality of their life is due to the level of caring provided by a gifted home manager and staff. That's true, but caring alone does not make the difference. It's also skill and experience and attention to the smallest of details. It is the ability to notice the smallest change in someone's appearance in a home where no one communicates with words. The slightest change in mood, color or affect is noted and dealt with immediately. Sometimes moods can be raised with a hearty greeting or caring cajoling. A few months ago however, it wasn't mood but the subtlest of signs that all was not well with Carey. No stranger to life threatening illness, Carey went from being fine to needing intensive medical attention all within a couple of hours. Her one weak and other collapsed lung, and enlarged heart are constant concerns to staff. The calls to doctors and mother and "the office" were immediate as was the trip to the hospital. Steroid treatment for asthma was slow to take hold causing many anxious days for all concerned. Double staffing of the home and hospital became standard protocol. Everyone was relieved when after weeks of treatment Carey finally returned to her home. The staff who support Carey are unique people. They have families of their own and face challenges of a different sort when they go home. They go on every day though, accepting Carey's many complications as just being a part of "Carey." She's just one of the family.