Never underestimate the power of families
and the love that they have for their children.
The advocacy and never-ending energy of passionate people with a common
cause can make the seemingly insurmountable happen. Family Lives
began as a dream of parents in the mid 1990s. The population of
children requiring in home nursing supports was growing. The
existing supports were not meeting their needs. Parents faced the
frightening prospect of having to place their children in institutions,
tearing their families apart. That option was unacceptable.
Families advocated for change. They sought assistance from
organizations that valued people with disabilities; organizations that
believed people with disabilities have valued roles to fill in the
community. Shriver Clinical Services, as a part of its community
based programs, offered trainings sessions for families and caregivers
of children with complex medical needs. The training sessions
focused on teaching the process of finding valued roles for people with
disabilities within the community. The sessions were based on the
belief that people with valued roles are less at risk for being placed
in institutional settings, and that the more valued roles a person
fulfills, the more likely they are to remain in their communities.
O’Donnell, the CEO of Shriver Clinical Services, used the time offered
during breaks at the training sessions as an opportunity to speak with
those attending. He heard what they were saying. He made time throughout the course of the following year to introduce
himself to families and the amazing children they fought so valiantly
to keep at home. He befriended Tricia Luce, the parent of a child
with complex medical needs requiring nursing supports at home.
She generously and unselfishly introduced him to her son Scotty and
other families facing similar issues. She advocated strongly for
people whom she and her son believed had needs that could be met, but
traditional providers were not meeting. When her son passed away,
Mr. O’Donnell made a commitment to find a solution. He would seek out
and support new and innovative solutions to home care service provision
that were desperately needed by families.
Clinical Services applied for, and received, an innovation grant from
the Massachusetts Department of Mental Retardation. In addition,
Shriver Clinical Services
generously agreed to fund all remaining costs of the project. Shriver
Clinical Services next held focus groups with families and nurses,
seeking to determine what worked and didn’t work for the population of
people the organization was seeking to help. Numerous families
and nurses gave generously of their time and experience to assist
Shriver Clinical Services in this endeavor. The information
obtained in the focus groups supplied the goal: for children to live in
their communities with whatever supports were necessary, so that their
families could remain together. The focus groups strengthened the
belief of Shriver Clinical Services that improving the lives of these
families was possible. The decision was made to build a small
organization that would provide quality care for 6 families, never
imagining that 10 years later they would serve over 100.
Lives was incorporated as a non-profit agency focusing on
empowerment. The primary goal was to reshape the overpowering
nursing concerns that many families thought of as the elephant in the
living room, and transform it to a small figurine, requiring care but
not overwhelming the home. Families stated that they wanted
nurses who were committed to their child and who were professional and
caring. They wanted nurses who were qualified to care for their
children, and an organization that would ensure that. They wanted
the nurses to be respected by the organization for which they
worked. It was important to families that the nurses be allowed
and encouraged to advocate for the people they served, without
disempowering the family. Families understood that they needed
the skills to advocate for themselves, as well as an organization that
would advocate for them when they were too tired. The focus, however,
would always be empowerment and not enabling.
wanted the people they served to be respected. They wanted a
working wage and benefits that would allow them to care for their own
families. They wanted to provide quality nursing care and they
wanted to practice the art of nursing. Most important to them was
that they wanted an organization that would care about the needs of the
people served, the needs of the nurses, allow for continued learning,
and stressed professionalism in nursing.
Lives’ founders, Conrad O’Donnell, Trisha Luce, Carolyn Brennan, Ann
Flynn and Rollin Rickard designed a comprehensive benefit program,
surpassing those benefit programs offered in hospitals, long-term care
facilities, and unheard of in the home care community. They set
high standards for the families they would serve and the people they
Brennan was chosen to run the daily operations and ensure compliance
with state and federal regulations and requirements. In many ways
her life mirrored the lives of those Family Lives sought to serve and
employ. Shriver Clinical Services’ belief was that her
focus would be on the needs of the families and nurses. There was
an understanding that parent/nurse advocacy would be instrumental, and
ensure that the organization would not lose sight of families or the
mission when times were hard. Parents of the children served were
asked to be members of the Board of Directors and the Professional
founders chose a goose as Family Lives' logo. They believe that
in a small way, geese represent what families work so hard to achieve
and what they provide for each other. They never leave one of
their own to face hardship. If one member of a flock is too weak,
tired, or too ill to fly with the group and drops out of formation, a
second goose from the flock stays with the first until it is able to
fly and then they rejoin together. No member is ever left
alone. The formation, when they fly, never seems quite perfect,
never symmetrical, but it works for those who are in it. When
flying in formation, one goose takes the lead to break the way for the
others. When that goose becomes fatigued, it drops back and
another takes over, allowing each goose the opportunity to rest and yet
remain with the group, giving when it can and resting when it needs to.
That is what a true community is all about, searching for what
each member has to offer and allowing each member the opportunity to
lead regardless of their limitations.
each level of the certification process, Family Lives focused on the
belief that people with disabilities offer the same things to
communities as people without disabilities. They simply have to
do it in a different way.
planning process was long and arduous. Even the design of the
questions that would be asked during interviews was considered
important. Clinical skills were of significant importance.
Equally important was an understanding that people with even the most
severe impairments have much to offer, and enrich a community by their
presence and the roles they fill. Without a basic understanding
of, and a belief in, these ideals nurses or families would not be
successful at Family Lives.
In August of 1999, Family Lives began serving children with complex medical needs. Children served have varying needs. Medical conditions range from complex seizure disorders to ventilator dependent patients with central lines. We serve over 100 of the most amazing and powerful people. While we continue to focus on the pediatric population and admissions reflect that focus, a small number of adults are now being served as our population has aged. We have committed to families as they have committed to us and we value their loyalty. We employ almost 300 dedicated, talented nursing and therapy professionals. While our focus continues to be block nursing, we have begun to expand and now provide physical and occupational therapy services on a very limited basis.
Family Lives’ focus is to work collaboratively with people and organizations that can and do make a difference in the lives of those we serve. How the organization operates is a reflection of the hearts and minds of parents and nurses who in the mid 1990s had a dream and were willing to do what they had to do to make it happen. We are here because parents’ love for their children empowered them to take action. We are here because nurses wanted to provide quality care in a respectful and professional way. We are here because families and nurses wanted more.
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