Life with PurPose
how one community wiLL create a modeL resPonse to a nationaL, even gLobaL, ePidemic
t he Spe ct r u m of a u tiSm in the coming decade, as many as one-half million children with autism in the united states will become adults, and very few options for care exist for them. it is a frightening reality for hundreds of thousands of families who want to ensure that their adult children live productive, fulfilling lives – not only now but after the parents and siblings have passed on. autism is the fastest-growing developmental disability in this country, affecting 1 in 110 children and increasing at 14 percent a year. this spectrum of disorders, for which there is no clear cause, is characterized by impaired language and ability to relate to others as well as certain repetitive behaviors. many people with autism are able to live independently, yet others with more severe impairments need extensive support. it is a condition that requires customized, individualized services. because nearly 85 percent of the autistic population is under the age of 22, understandably most attention has been focused on early intervention for children with autism. for the inevitable wave of autistic adults, there has been no promising solution – until now.
“the MoMentuM Behind this proJeCt reMinds Me of a Barn-raising, in whiCh a CoMMunity CoMes together in a one-tiMe ColleCtive response to a signifiCant Cause that iMpaCts us all.”
– andy mathieson, advisory board member
a ddreSSin g an em er g in g c r iSiS more than 80,000 adults across the nation are on waiting lists for residential facilities geared specifically to autism. while most programs, from large institutions and farming communities to group homes, do their best to create safe environments, they also increase the isolation already experienced by people with autism. and few existing programs address the behavioral, sensory and communications challenges that autistic individuals face. even more alarming is that many families with autistic children who are in their early 20s often discover that there are no openings in residential programs and wait lists as long as 8 to 10 years. many programs that have available space mix autistic individuals with those with other developmental disabilities, diluting the specialized focus on the needs of this one group. the reality is that little preparation is underway for a continuum of choices for autistic children at the time they become autistic adults. it is a community problem of extraordinary magnitude, and we intend to change that. a pl an of act i on sweetwater spectrum will be a community within a community in downtown sonoma, california. four-bedroom homes for 16 participants will offer supported living and a variety of activities in common buildings and across beautiful grounds filled with gardens, pools and trees. enriching this experience will be the historically welcoming neighborhood and the nearby town center. architects have designed the individual rooms specifically for the needs of autistic adults across the entire spectrum, ensuring safety and accounting for considerations such as sensitivity to light, sound and movement. with the anchors of stability and familiarity, residents will have a variety of choices –enjoying quiet spaces or the calming waters of a therapy pool, working in organic gardens and engaging in cooking classes, art, exercise activities, music and much more. residents also will participate in supported local employment or day programs. sonoma residents will be welcomed as volunteers or staff to assist with the art, exercise and farming programs. each member of sweetwater spectrum’s “supported living” community will have an individualized program – tailored to his or her specific needs and capabilities and expanding choices. a network of established service agencies, such as Lifehouse and becoming independent, will provide customized programs for each resident. Living in sweetwater spectrum will be available to individuals regardless of financial capacity. and, as the first program of its kind, this beautiful, environmentally sustainable community will be a financially viable model that can be applied on a national scale.
sweetwater speCtruM: a ViSion for the future
in 2009, a group of families with autistic children founded the nonprofit organization we now call sweetwater spectrum. we have collaborated to meet this extraordinary need through a signature program that will start in our community – and can be replicated anywhere. our goal is to build for autistic adults an environment typically not available to them – a sense of community. sweetwater spectrum will maximize residents’ individual development and independence so they can live with purpose, dignity, quality and access to new opportunities. this residential community is a completely new model. we have toured the country and selected the best elements of existing services to design a compassionate, pragmatic and ambitious program of choices for autistic adults primarily in their 20s. what we are creating on a small scale is the first but absolutely critical step in a concept that can be reproduced in communities around california and the u.s.
“Blazing new trails is nothing new for people in California. look how John Muir CaMe here to take on wild, unCharted territory and develop an environMental Model for land preservation that has Been widely repliCated.” – Patty Jackson, founding donor
• nearly 3-acre property near downtown sonoma • four 3,400-square-foot homes with 4 bedrooms each, for a total of 16 adults • activities center with teaching kitchen, arts room, exercise room, one-acre organic garden, greenhouse; therapy pools • studio apartment for a land steward • executive director to oversee the program, coordinate each participant’s individualized plan and serve as the link with the local community and regional centers • Professional staff-in-residence and individualized programs by service agencies
“sweetwater is pioneering a Model that faMilies all over the u.s. will want to see and learn froM...a Carefully Considered residential live and work CoMMunity that refleCts great sensitivity to the personal needs of residents and their faMilies and an intelligent appliCation of learning and growth. its hoMes, prograMs and CoMMunity integration will support and enhanCe its residents’ quality of life and independenCe.” – bryna siegeL, Ph.d. director, autism cLinic university of caLifornia, san francisco
f in a nci ng our ViSion
the board of directors of sweetwater spectrum has launched an $8.5 million campaign to acquire and develop the nearly three-acre site near downtown sonoma and construct this residential community for adults with autism. more than one-third of the necessary seed capital funding is already in place, generously committed by individuals who have embraced our vision in its earliest stage. this one-time investment to complete the land acquisition and building project will be sustained in perpetuity by rent, funding for staff provided by the california department of developmental services and supplemental salary support by residents’ families. those who join in realizing the vision of this first sweetwater spectrum community will have a direct impact on the lives of autistic adults, not only in sonoma but wherever our new model is extended. to complete what we have started in our community and meet the financial terms of our plan, our timelines are short and aggressive. we seek to raise commitments of $6 million by June 2011 and the remainder of all commitments by June 2012. gifts can be made as cash, pledges, stock or other securities transfer.
a co llec tiV e c o m m un ity r eSpo n Se
for the past several decades, communities across the nation have opened their doors to successful experiments in assisted living for the growing population of senior adults who want to live independently with services tailored to their particular needs. these lively and supportive residences have completely changed the possibilities for seniors who can depend on suitable social, cultural, medical, transportation and other services in safe environments where they can enjoy life to the fullest. today the emerging population of autistic adults is the new face of supported living in our communities. as founding members of sweetwater spectrum, we are undertaking this ambitious project with a sense of responsibility for all adults who will age with autism and the community-based hope we can bring to them and their families. adults with autism deserve what every adult values – friends, creativity and exploration, health and well-being, quiet and calm, safety and security. Life with purpose: who would not wish that for any member of our community? we invite your generous support for this urgent community need. you can become part of the network of innovation that founds sweetwater spectrum in sonoma – and creates a legacy to be modeled in communities everywhere.
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