Autism & SOS Health Care, Inc.
Autism is a very significant problem for children, young adults and adults, and for all of their caregivers – parents and siblings notable among them. According to the Autism Society of America, the nation’s leading grassroots autism organization, “Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate, and interact with others. ASD is defined by a certain set of behaviors and is a ‘spectrum condition’ that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and early diagnosis/intervention and access to appropriate services/supports lead to significantly improved outcomes. Some of the behaviors associated with autism include delayed learning of language; difficulty making eye contact or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills and sensory sensitivities. Again, a person on the spectrum might exhibit many of these behaviors or just a few, or many others besides. The diagnosis of autism spectrum disorder is applied based on analysis of all behaviors and their severity.”
“In 2016, the Centers for Disease Control and Prevention issued their ADDM autism prevalence report. The report concluded that the prevalence of autism had risen to 1 in every 68 births in the United States – nearly twice as great as the 2004 rate of 1 in 125 – and almost 1 in 54 boys. The spotlight shining on autism as a result has opened opportunities for the nation to consider how to serve families facing a lifetime of support for their children. In June 2014, researchers estimated the lifetime cost of caring for a child with autism is as great as $2.4 million. The Autism Society estimates that the United States is facing almost $90 billion annually in costs for autism. (This figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, related therapeutic services and caregiver costs.)” A more recent survey of parents suggests that 1 in 45 children ages 3-11 have been diagnosed with ASD. These results are considerably higher than the latest, official government estimate of 1 in 68 American children with autism.
SOS Health Care – Myrtle Beach, South Carolina
SOS Health Care, Inc. was founded in 1989 by Dr. Bill Davis, and is a 501(c)(3) nonprofit organization serving autistics and their caregivers in the Grand Strand/Waccamaw Neck areas as well as in immediately surrounding areas. Its funding comes from insurance, grants, fundraisers and private donations. SOS is the sole full-service provider of care services in the local area, for people who have disorders that fall along the autism disorder spectrum. Certainly, SOS collaborates with other autism support organizations such as South Carolina Autism Society, Autism Speaks and various State and Federal government agencies and other organizations, all for the benefit of autistics and their caregivers. But in terms of actually delivering the hands-on services which its clients require, SOS is singular here in the Grand Strand/Waccamaw Neck areas.
SOS’s programs are many and include:
ABA (Applied Behavioral Analysis) Therapy – Georgetown Social Skills Day Camps
Early Intervention Job Coach Program
ABA Therapy – Post-Early Intervention Life Skills and Housing Program
ACE (Autism Community Education) Project Lifesaver
Career Camp SOS Summer Camp
College Mentor S.O.U.L. “Skills of Understanding Life”
Dogs for Disabilities Substitutes for Santa
Fit for Life Urgent Dental Care…
Friday Knights II
…all delivered by a very dedicated and highly trained staff of both professionally certified experts, non-professional staff and volunteers.
SOS, in collaboration with Coastal Carolina University’s Dr. Stephen Firsing, is currently collecting data from Medicaid to determine the number of individuals with autism and intellectual disabilities per county in South Carolina.
Details regarding each of these programs, and much more about SOS, may be found on its web site at www.sos-healthcare.com which, along with numerous meetings which have been held with SOS staff, is the source of the above information.
A new volunteer organization, Grand Strand Autism Coalition (“GSAC”), was formed in March 2017 as a registered South Carolina 501(c)(3) charity devoted to “serving to support individuals with Autism and their caregivers” situated in the Grand Strand/Waccamaw Neck areas of South Carolina. That means, simply, that we raise awareness of the needs of people with autism and those who provide care for them, and we raise funds to help satisfy those needs, all with a singular focus upon benefitting people in our local area.
This organization’s formation was inspired by two of the people who are among the group of our dedicated volunteers, a couple who know the severe challenges of dealing with autistics, as they have an autistic son who is approaching 22 years of age. With their situation in mind, as well as personal situations affecting others among our volunteers, a group of dedicated individuals who formerly sat on the Board of Directors of another charity, Tee Off Fore A Cause, Inc. (“TOFAC”), put their heads together and decided to launch a new initiative. Thus, the genesis of this group of volunteers.
That said, the team of people who governed TOFAC set about to find another charitable cause which it could wholeheartedly support, with the objectives to ensure that, one, the cause is significant; two, that the need is significant here in the Grand Strand/Waccamaw Neck areas; three, that the net funds which a newly formed charity would raise could be assured of coming back to the benefit of people here in the Grand Strand/Waccamaw Neck areas; and four, that among other beneficiaries of its work, the charity would benefit children.
As we have organized, we satisfy all of those objectives. Our resources consist principally of volunteers who do all of the work involved, and our principal fundraising vehicle is an annual charity golf tournament. 2018’s will be held October 29th at The Reserve Golf Club of Pawleys Island. All of the net proceeds from that event will go to SOS Healthcare, Inc. and more specifically to SOS’s Oak Tree Farm initiative (see below). In organizing and orchestrating this golf tournament, SOS and our volunteers will be partnered, with the collective group of our volunteers acting as agent on SOS’s behalf, under the umbrella name of SOS Charity Golf Event, a separate 501C3 registered in South Carolina and recognized by the Internal Revenue Service specifically for the purpose of holding the aforementioned golf tournament. Our website may be accessed at https://www.soscharitygolfevent.org.
As our volunteers have learned more and more about what SOS does, for whom and how, we have become particularly interested in SOS as the sole full service provider of autistic care services to individuals situated in the Grand Strand/Waccamaw Neck areas. One program area which SOS continues to develop, namely, Housing and Transition, has been selected by us as the sole beneficiary of the net funds which we are able to collect.
About 500,000 children with autism will become adults over the next 10 years. A 2011 study found that 39% of young adults with autism received NO services after high school. At age 21, state funding and services supplied via the educational system expire. 90% of adults with autism are unemployed despite the fact that many of them are capable of working.
SOS currently serves 70+ adults in its programs, among the 1200 individuals in 9 counties which it served in 2017. About 500,000 children with autism nationwide will become adults in the next 10 years. According to The Arc, 4.8 million Americans with disabilities rely upon Social Security income with incomes of less than $8,700 per year. According to Autism Speaks, 81% of adults with autism live with aging caretakers.
An SOS “Dream Team” Committee has for a considerable time been working on solutions to the housing issues related to the population which SOS serves. Its mission is “To design, develop, and maintain a community for individuals with autism and related needs that promotes a healthy and active lifestyle to meet milestones over a lifetime. This community will have supports that encourage education to promote inter-dependent living in a place to live, laugh and love as friendships are developed.” SOS’s vision is to partner with the local municipalities to provide a safe environment where every person who is subscribed to this program is living and working to his or her full potential.
Obviously, early intervention during the formative years of life is crucial to the proper treatment of autistics. But, as children with autism grow to young adult and then adult ages, their needs for independence grow with them, and those needs today are largely unmet. It is with that in mind that SOS is developing its housing plan, Project Oak Tree Farm.
Oak Tree Farm (Source: SOS)
Oak Tree Farm will provide a community and housing for individuals with Autism and related Disabilities. Currently these citizens have no access to safe, affordable housing. The community will consist of 28 single-family homes with single room occupancy units in which individuals can rent, live with friends or personal care assistants, and participate in community events. Oak Tree Farm will be close to the Coast RTA bus route so residents can take public transportation to access employment, recreational activities, and other community resources.
Oak Tree Farm symbolizes strength of character and courage. Based on the data collected from the Transition Program CDBG Grant, we learned through the Certified Life Planning process that the individuals we serve with developmental disabilities want to create a community. Oak Tree Farm will provide housing for a limited clientele, which consists of adult individuals with Autism and related disabilities who are low-moderate income. Many of these individuals are unable to work and rely solely on SSI and subsequently fall into the low income bracket. Individuals who are able to work can often work only part time due to issues related to their disability. In addition, due to issues related to their disability, this population is frequently only able to work in minimum wage, entry level positions. People with disabilities are vulnerable to poverty. According to the Horry County Analysis of Impediments to Fair Housing Choice 2014, in South Carolina in 2011, 30.2% of people with a disability aged 21-64 were living below the poverty line. Only 28% were employed.
Horry and Georgetown County citizens with developmental disabilities have no access to housing in the community. There is a severe lack of safe and sustainable housing for individuals with developmental disabilities in Horry and Georgetown Counties. SOS Health Care partnered with Coastal Carolina University’s Dr. Stephen Firsing, Ph.D., who is an Assistant Professor of Public Health and a statistician. Dr. Firsing conducted a secondary data study for SOS. In this study, he coordinated with Medicaid and learned that there are over 4,000 individuals with developmental disabilities in Horry County alone.
Nationwide, about 500,000 children with Autism will become adults in next 10 years. According to Autism Speaks, 81% of adults with Autism live with aging caregivers. According to The Arc, 4.8 million Americans with disabilities rely on SSI with incomes less than $8,700 per year.
The lack of resources leaves individuals at risk for placements in nursing homes and other unsuitable living conditions if the caretaker passes away. Currently, the only way to receive a housing placement for an individual with a developmental disability is through a critical waiting list at the Department of Disabilities and Special Needs. The critical criterion plans only for those that find themselves homeless or soon to become homeless. According to the Horry County Disabilities and Special Needs website, there are only 66 beds in the county to serve what is now a population of over 4,000 developmentally disabled individuals. According to the Horry County Analysis of Impediments to Fair Housing Choice 2014, “Horry County’s vulnerable disabled population is facing a critical shortage of beds, services, and supports.” Georgetown County is in a very comparable situation.
Oak Tree Farm is a new project in our local area, and will be the area’s first and only housing community for individuals with developmental disabilities. Currently, SOS Health Care has a contract to purchase land in the Conway area and funding to support this endeavor, largely through government-provided block grants.
The community will consist of 28 single-family homes with single room occupancy units built over a period of 10 years. Once completed, the community will house more than 100 people with autism as well as a small staff of in-house professionals. SOS’s 2LiveBeyond Initiative has committed to build the first house, valued at $85,000, which will be funded in 2018. This house will serve as a respite for families and a transition home to train individuals to live independently before moving into their permanent housing at Oak Tree Farm.
In addition, the community will house the Life Skills Training Center. Currently, the Life Skills program assesses the individual’s needs and provides access to community resources including arts, cooking, fitness, health, community activities and a consistent schedule. All of the goals identified in the original Assessment of Functional Living Skills are used to assess the individual and develop an individualized plan. Then, data is collected on the individual’s progress. Some examples of the skills that are addressed by the Life Skills Coordinator are household maintenance, cooking, cleaning, laundry, menu planning, grocery shopping, leisure, money management, self-care, health, hygiene, medication management and social skills. There is also an emphasis on preparing for employment or volunteering based on the individual’s choice and ability. Each individual has a personalized housing plan created through assessments and Certified Life Planning. The 70+ adults SOS is currently serving will attend the Life Skills program at the Training Center once funding for the building has been secured.
The design for Oak Tree Farm has come after considerable research of other similar communities elsewhere in the country. In particular, Noah’s Ark in Lakeland, Florida, provided much detail on their housing community with regard to building plans and programs. Also, Noah’s Ark is the model that we want to use regarding the individual’s Medicaid waiver services. These waivers fund caregiver services and various other services needed for the residents.
SOS Health Care’s applications for residence at Oak Tree Farm will consist of a comprehensive list of questions to determine the individual’s eligibility for residence as well as the level of care needed by the individual. Questions will include information on the individual’s specific developmental disability diagnosis, how long the individual can be left alone, skills the individual has pertaining to independent living, if the individual currently has Medicaid waiver services, behavioral issues, medications, transportation needs. Other sections of the application will ask for ethnicity and income in order to be in compliance with grant requirements. The application will also ask for information on the individual’s physician, emergency contacts, and case manager contact. In addition, the application will assess the individual’s desired living arrangements and social skills.
SOS Health Care will establish a landlord-tenant agreement for all of the individuals that live at Oak Tree Farm. SOS toured one of Home Alliance’s apartment models, and after much discussion with our team and individuals we serve, we felt that the single-family models were more suitable for the individuals we serve. SOS Health Care has met with Habitat for Humanity to discuss our plans and has benefitted from their support of our housing community. We have been fortunate to receive copies of their floor plans and information on infrastructure. To be more affordable and have long term sustainability, SOS is currently researching grant funding for solar, wind and geothermal energy.
We feel that our support of Oak Tree Farm is the best way in which we may serve the needs of individuals with autism here in the Grand Strand/Waccamaw Neck areas. Certainly, the other programs which SOS delivers are crucial, but for years they have been well managed and sufficiently funded. Oak Tree Farm is a new and equally vital initiative, and funding to make it come to life is a new and very significant need. As such, it is with great pride and enthusiasm that we devote our net fundraising collections to Oak Tree Farm.