The M.O.R.G.A.N. Project Helps Special Needs Kids and Their Families
The M.O.R.G.A.N. Project is a 501(c)(3) non-profit organization, established by Robert & Kristen Malfara in honor of their precious son Morgan, who has a very rare form of Leukodystrophy. All officers and board members serve as volunteers, and because we do not use our charitable contributions for salaries, the majority of our proceeds go towards meeting our program goals.
Robert & Kristen feel honored to have been chosen to be the loving and caring parents of this very special, heaven-sent child. But most importantly, they also feel that it is their privilege to do so.
First and foremost, we must recognize that it takes a special person/parent to take on the responsibilities of caring for a special-needs child, whether your own child, a foster child, or adopted child. However, it takes an extremely exceptional person/parent to recognize that it is our privilege, not just our obligation, to be loving caretakers to these very special Heaven-sent angels, and make their lives as rewarding and comfortable as possible.
The M.O.R.G.A.N. Project was established to help these amazing people do just that!
“Our mission is to provide the tools for a therapeutic and fun experience to children with physical and developmental needs.”
The M.O.R.G.A.N. Project is a national, community-based organization of volunteers dedicated to promoting awareness and facilitating support of parents caring for their children with special health care needs, thereby enhancing the Quality-of-Life for these special families.
The M.O.R.G.A.N. Project’s Quality of Life support programs for children with disabilities have been designed around one very simple value: to make the parents’ job of caring for their own special-needs child in the family home just a little bit easier.
In addition to providing guidance, resources and gently used disability equipment free of charge to these families, the organization has recently created a new therapeutic/recreational option for families in Brevard and surrounding counties that focuses directly on the sensory functions of their child with special health care needs – designed just for children with physical disabilities and/or sensory processing disorders. Furnished with all the items necessary for inclusive therapeutic play and sensory stimulation.
Morgan’s Place is home to our unique, state-of-the-art Sensorium, Soft Play Vestibular Room, Technology Zone and iAccessibility Corner. Based on Snoezelen principals of multi-sensory environment protocols, it is completely wheelchair accessible and 100% wirelessly controlled. For a brief moment in time, these children that have no control whatsoever in their lives can choose what they want to do – choose the colors, the sounds, the vibrations, the smells and the activities that they desire – that we all take for granted!
Over the years our goals for this organization have gradually changed, based solely on our own experiences of caring for our own chronically ill child with very involved special needs. Our original vision has not changed; it has just evolved to accommodate the additional needs and obstacles we have faced as our son has gone from an infant to a grade-schooler to a teenager. As a result, our Quality-of-Life support programs have been designed around one very simple value: to make their job of caring for their own special-needs child in the family home just a little bit easier.
Since 2001, our all-volunteer team has responded to thousands of letters and email inquiries from parents of children with special health care needs seeking support. We have been able to direct many to resources that they were not aware of, resources that we have researched and catalogued over the past 17+ years and have now compiled into an extensive database. These resources are constantly updated, and may be downloaded off of our website.
We have responded to many hundreds of requests for pediatric adaptive and positional equipment through our Pediatric Disability Equipment Exchange Program that was instituted in early 2006. Through this program we have successfully matched donated items from families that no longer have a use for these items with families that have a demonstrated need. The M.O.R.G.A.N. Project provides the shipping of donated equipment from the donor and to the recipient at no cost to the families, and provides a tax receipt for the donations. Typical items processed through this program include bath chairs, gait trainers, walkers, car seats, feeder chairs, lightweight adaptive strollers and various medical supplies.
In late 2007 we began our QOL Award Program, offering families that meet our minimum criteria the opportunity to apply for the “tools” that make their job of caring for their child easier AND enhance quality of life for the child and family at the same time. These “tools” are for things that are not considered medically necessary by insurance and Medicaid, but that can make a huge impact on the parent’s ability to be the safest caregiver and best advocate for their child that they can be. This program varies from year to year based on available funding, but has previously included providing bath chairs, car seats, lightweight portable adaptive strollers, positional seating devices, switch activated toys, vestibular stimulation, and similar items to children under the age of 18 with lifetime physical disabilities. We have also offered a limited number of families with financial assistance to help offset the cost to attend family oriented, disease-specific medical support group conferences for the first time, in order to network with other families in the same situation. Due to limited funding, this program is currently on hiatus while under review and not accepting requests.
The M.O.R.G.A.N. Project has identified caregiver support as a high priority. As a result, we have created “Parenting a Child with Special Needs”, a basic informational pamphlet for parents who have just learned that they will be lifetime caregivers for their child with special health care needs. This pamphlet is given to parents at no cost, and offers guidance to plan and coordinate care for their child. It offers our Top 10 tips as to where to start on their new journey, along with some of the most important resources they will need as they begin. Please email us and we will send it to you!
Opened in 2012, The M.O.R.G.A.N. Project has established a facility named Morgan’s Place, located in Melbourne, Florida. This unique center is now home to all of our Quality-of-life support programs, as well as offering information on other community disability resources and services. Additionally, we offer caregiver and advocacy training, seminars on the various issues related to caring for children with special needs, navigating the medical and emotional hurdles, finding financial assistance, caregiver support, legislative issues, etc.