With the prevalence of autism on the rise, the number of adults living with autism is also increasing. The pace of the development of programs and services has not kept up with the growing needs of adults with autism spectrum disorders to enable them to participate in and contribute to community life. More energy must be devoted towards the adult population to address their unmet needs, and nobody is more aware of that than Linda Walder Fiddle, Esq, Founder and Executive Director of The Daniel Jordan Fiddle Foundation. Inspired by her son Danny who passed away a decade ago, and her concerns during his lifetime for his future as an adult, Linda is a devoted advocate for adults with autism and, through her Foundation’s vital work, has helped develop and support many of the programs that exist now for adults across the country.
Linda is changing the landscape of services for adults living with autism with The Daniel Jordan Fiddle Foundation’s new Signature Grant Programs that ultimately will lead to the creation of blueprints for organizations across the country to utilize for their own development of adult autism programs. The model adult programs developed and funded by The Daniel Jordan Fiddle Foundation can be found throughout the United States and include residential, vocational, educational and recreational opportunities that are suitable and sustainable. The Daniel Jordan Fiddle Foundation is at the forefront of the “adult autism movement,” not only as advocates but also as an organization that is addressing this challenge in tangible ways that affect lives.
Tell us about the history and mission of The Daniel Jordan Fiddle Foundation and why you decided to focus on adults with autism.
The Daniel Jordan Fiddle Foundation’s first collaborative programs began in 2002 and initiated our focus on addressing the need for increased advocacy and services for adults with autism spectrum disorders. At that time our organization was the only one in the country even talking about the adult population.
My son Danny passed away at age 9. During his lifetime, he attended wonderful schools and I knew that he was going to get a good education and the supports and services that he needed. But even when he was that young, I was concerned about what would happen to him when he became an adult. Once I began researching to learn want was available, it became clear that there were very few programs and services for adults living with autism. There were some services for adults with various challenges, but few focused solely on adults living with autism.
After Danny passed away, friends and family urged me to continue as an advocate for people living with autism because of how deeply I care about the incredible individuals and families in the autism community. Eventually, I decided that this was indeed something I was committed to, so with the support of family and friends, The Daniel Jordan Fiddle Foundation was established as a public foundation. From the very beginning, the Foundation’s Board of Trustees determined that our exclusive focus would be on adults and young adults as they transition to adult life. No other national organization was focusing exclusively on adults and our Board had the foresight to embrace the vision I had to create opportunities for full and productive lives for the diverse population of adults on the spectrum.
The Daniel Jordan Fiddle Foundation is what I would call a “hybrid organization” in the sense that we are not a typical grant-awarding organization. We have become a co-developer of programs with exemplary partners who have expertise in various areas of serving adults. Betsey Parlato, President of Chapel Haven in Connecticut characterized us as a “social entrepreneur.” Currently, with our Signature Programs, here’s how we do it. We approach a handpicked organization and present an idea about a potential program that they might consider working with us to initiate. We then work with them to develop and implement the program. The Daniel Jordan Fiddle Foundation then funds the development of the program, sometimes for several years, until a sustainable model is created. Our primary goal is not just to develop a vital new program for adults, but also to work together with the partner organization to create a blueprint for other organizations to replicate the program in their own community.
Another aspect of our organization is that we are all volunteers. No one on our staff takes a salary, and we are all committed to volunteerism. We feel it is important to promote the idea of volunteerism in this country and that each person can make a difference. This is a core value of The Daniel Jordan Fiddle Foundation. We are equally committed to having our fundraising proceeds go directly towards our mission.
Above all else, our goal is to enhance the presence of adults on the spectrum in community life. We must respect the individuality and diversity of adults on the spectrum and society must be educated to do so.
Tell us about the Daniel Jordan Fiddle Foundation “Signature Programs” that have recently been announced and what makes them unique.
The Daniel Jordan Fiddle Foundation doesn’t solely award grant support as I mentioned. We take it a step further by actually looking at the needs and gaps in the services and programs available for adults on the autism spectrum and then innovating an approach to addressing these needs. Our Signature Grant Programs exemplify unique endeavors that address needs or areas that have not been focused upon. Since we started the Foundation we’ve come to know and work with many programs around the country and we feel fortunate to have forged productive alliances with so many wonderful service providers. Our years of experience in fostering the development of adult programs and supervising those we have supported enables us to identify the entities that can successfully achieve programming goals. For our Signature Programs we have carefully handpicked each organization to partner with based upon their expertise and ability to achieve desired outcomes as well as their track record in implementing sustainable programming
The Daniel Jordan Fiddle Foundation Signature Grant Programs are destined to become blueprints that address residential, vocational, educational, recreational and health and wellness supports for adults. We hope other organizations will replicate them in their own communities, especially where such services for adults are lacking. By having our name on each Signature Program along with that of our partner, we are putting a stake in the ground for adults within the service provider organization and enhancing their repertoire. Hopefully we are also inspiring others in the autism community to forge collaborations that better the lives of adults on the spectrum We are committed to working with each of our partner organizations for multiple years until we are satisfied that the program is ready to be shared with others. We have learned that it takes more than one year to develop quality, successful programs. This is why we have gone in what others have called a groundbreaking direction in establishing suitable and sustainable blueprints that have been cultivated over time. When a program is only funded with a single year grant that organization then has to continually look for yearly funding to keep that program going; it is often challenged to develop a sound model that can be replicated.
We feel that with the great and growing need for adult programs, we must create these blueprints. These blueprints can, of course, be adjusted within the grassroots of a given community but our goal is to provide a plan of action and implementation. Some of the areas our Signature Program blueprints will address include: How to build the program? Ideas for funding the program? How to engage participation? How to assess the challenges and success of the program? It is our view that programs should be constantly evaluated and refined by the service provider. In addition to creating replicable blueprints, the goal is to make the program a permanent entity within the service provider organization.
Using The Daniel Jordan Fiddle Foundation Peer Support Group Program at The Global and Regional Asperger Syndrome Partnership (GRASP) as an example of how we have gone about partnering to develop a signature program, I asked Michael John Carley, Executive Director and Founder of GRASP, “What are some of the gaps in services for the people that you work with?” Michael explained that there are many adults who are now becoming senior citizens and were not self-identified or diagnosed even though they suspected for many years that there was something different about them. Now they are realizing that they are on the spectrum and have many of the same qualities as individuals who live with Asperger Syndrome, a support group for individuals in their 20s and 30s wouldn’t be appropriate for them, as they need support appropriate for their current stage in life. Out of this conversation, and because of GRASP’s expertise in developing support groups for adults on the spectrum, we partnered with them to create The Daniel Jordan Fiddle Foundation Peer Support Group Program at GRASP to develop a support group that addresses the needs of these seniors on the spectrum. As far as we know, it’s the only autism support group in the United States, maybe in the world, that is focusing on senior citizens.
We will periodically evaluate how this program progresses and grows and also watch the challenges of engaging a group of this age to join such a support group. We will need to learn what unique supports they want at this stage in their lives. This is a good example of how we partner with an exemplary service provider to develop a unique program that fills a gap in services and addresses an area of unmet need for adults. We currently have seven different Signature Grant Programs with partner organizations across the United States and our goal is to help nurture these programs and work closely with service providers to see that they succeed.
How will these Signature Grant Programs ultimately lead to the development of blueprints that organizations across the country can utilize in the development of similar services in their local communities?
Using our annual magazine DJF News to Be RED and our website (www.djfiddlefoundation.org), we will report on the yearly progress of each of the programs. As it is still early in the development of this process, it has not been determined what the final product will look like, but we are going to share all of these different models with the community. One thing I can guarantee is that the presentation will be unique and involve a format that will be pioneering in the world of autism. It will allow for maximum dissemination within the autism community and the community at large. I hope this stimulates the public’s curiosity – stay tuned!
What specific areas of unmet need and gaps in adult services are you focusing on?
We are currently focusing on lifespan health and wellness vocational training and community life skills, the transition into adult life and facilitating the participation of adults who normally do not have access to good programs. Other Daniel Jordan Fiddle Foundation Signature Programs include a blueprint for developing a grassroots resource network and another is a respite/vacation program that is all about fun for adults and their families. In the near future we will be adding more Signature Programs that address residential support systems and self-advocacy for adults. There are really endless possibilities for program ideas, but our ultimate goal is to present viable new ways for adults on the spectrum to live, work and participate in community life. I would like to give the readers of Autism Spectrum News a sampling of some of The Daniel Jordan Fiddle Foundation Signature Programs:
The Daniel Jordan Fiddle Foundation Vocational/Life Skills Fund at the Southwest Autism Research & Resource Center (SARRC) Vocational and Life Skills Academy in Arizona is designed to create a blueprint for engaging those adults in the autism community who do not normally have access to vocational and life skill training. The blueprint will include ways to enhance communication about such programs so that people in underserved communities can become informed. The fund then enables such individuals to attain the benefits of the outstanding offerings and trainings at the academy. We feel that all service providers will benefit from this blueprint we are developing as they seek to help not only those who have funding but those who are unable to afford quality vocational and life skills programming. The blueprint will also include ideas for service providers to gain funding and community support for such programs so as to enable underserved individuals to participate.
The Daniel Jordan Fiddle Foundation Workplace Development Program at the New England Center for Children (NECC) located in Massachusetts enhances their already wonderful vocational programs for adults and young adults by creating a blueprint for starting or improving such workplace training skills that are vital to attaining employment. During the next five years, the program will develop instructional modes that add to the existing workplace development program. This year they are developing a video modeling program because research has shown that modeling and showing interview skills and task analysis on video helps individuals on the spectrum learn how to improve skills. As the number of young adults and adults on the spectrum wishing to enter the workforce increases, this blueprint will help existing programs expand training and new programs develop the curriculum to prepare adults on the spectrum in their pursuit of employment.
The Daniel Jordan Fiddle Foundation Health and Wellness Program at Chapel Haven in Connecticut is a completely new endeavor for them. We were seeking a project to partner with Chapel Haven that added to their renowned programs that prepare adults to live independently in the community. Although Chapel Haven’s comprehensive residential, employment and educational programming is effective, there was one piece missing: health and wellness. This exciting new program, with the research support of the University of Connecticut, will examine aspects that improve and affect the health and wellness of an individual on the spectrum. Areas to be focused on include: decreasing anxiety, increasing self-esteem, attaining a healthy weight, fostering independent healthy food choices, and independent choices of exercise and activity. The blueprint will focus on how to teach adults about healthy lifestyles that include eating well, exercising, cooking and joyful relaxation.
One program that we fostered and have worked with since 2002 is with an organization called J-ADD (Jewish Association for Developmental Disabilities) located in New Jersey. The Daniel Jordan Fiddle Foundation Hotline and Resource Guide at J-ADD is a grassroots initiative that provides a free hotline and resource guide for families with nearly one hundred community resources. We have found that parents and caregivers, especially of adult children, and even the adult individuals themselves, often have questions about accessing information regarding programs and services that relate to their daily life such as, “Where do I find transportation? How do I find a program to learn about my recreational interest?” We are really committed to the idea that there should be a central repository of information where one can call free of charge to access information about local resources in the community. This blueprint will offer a way for communities around the country to create not only the resource guide but also a complimentary hotline where people can call to get personal attention regarding their questions.
These are some of The Daniel Jordan Fiddle Foundation Signature Programs for 2010 and more information can be found about our other programs on our website.
In the future, what do you see as some of the next Daniel Jordan Fiddle Foundation Signature Programs?
As mentioned, we will be adding more Signature Programs, but in a thoughtful manner. We are deliberately only adding a few programs at a time so that we can allocate the attention and resources necessary for each current Daniel Jordan Fiddle Foundation Signature Program to develop into a blueprint. In some cases this may happen in a year, in other cases it will take several years. Future programs will likely include ones relating to fostering strengths and talents of adults on the spectrum, such as in the arts, science and technology. We will most definitely focus on lifespan learning and educational opportunities for the diverse population of adults. Another area ripe for development are different kinds of residential-related programs for rural, suburban and urban communities. The development of our Signature Program is intentionally meant to be fluid and evolve to address the existing and changing needs of adult individuals with autism.
In addition to the Signature Programs, in what other ways is the Daniel Jordan Fiddle Foundation active in the autism community?
Besides co-developing and funding programs for adults on the spectrum, we also have been a very strong advocate on the state and national levels. I am a member of the New Jersey Adults with Autism Task Force and last year we presented a comprehensive legislative and policy agenda for improving the lives of adults on the spectrum. In addition, in our home state of New Jersey, we have worked very closely with legislators, including the former NJ Assembly Speaker Joseph Roberts, Assemblywoman Joan Voss, and Senator Loretta Weinberg. For example, we have collaborated to create first responder training, money for autism pilot programs for adults, insurance support for ABA therapy, as examples. Much of this work on the state level has translated to the federal level where we have worked closely with Senator Robert Menendez (NJ), who is extremely committed to helping families and individuals affected by autism. This past July, as a member of the Steering Committee for Advancing Futures for Adults with Autism (AFAA), a consortium of autism organizations committed to advocating on behalf of adults, a congressional briefing in Washington, DC was hosted by Honorary Co-Chairs, Senator Robert Menendez (NJ) and Congressman Michael Doyle (PA), where we presented a policy agenda relating to adults. I was honored to moderate a panel of Stakeholders who exemplified the diversity of adults living with autism.
It is my view that we need more collaboration between the public, private, and community sectors. That is what The Daniel Jordan Fiddle Foundation has been doing since our inception and this is what the AFAA is about – engaging the government to become a partner in creating the best futures possible for adults living on the spectrum. It makes perfect sense that the more organizations, businesses, community and government can work together, the better it will be for the adults we are serving through our efforts.
What hopeful message would you like to leave for families of young adult children who are transitioning into adulthood and also to adult individuals on the spectrum?
During the past decade it is absolutely gratifying to see how far our society has come in realizing that autism is a lifespan challenge that does not just affect children. So many years ago, when I sat alone researching how I would be able to find programs and supports for my son when he attained adulthood, I was dismayed and frightened. Today, parents of children and young adults do not have to feel so terribly alone, and indeed they are not. I am proud of The Daniel Jordan Fiddle Foundation Board of Trustees and their pioneering commitment to embrace the cause for adults and I believe we have been successful in opening many new doors for adults and hopefully opening the eyes of the community at large too. Sure, there is still much to be done, and many more doors need to be opened. I am confident that together we can do this. Each parent as an advocate for their adult child, each business that employs an adult on the spectrum, each community that says yes to a group home and each supportive neighbor makes a difference. We must not give up, we must continue to strive for the best futures possible for all adults living with autism, and in doing so, we will fulfill for all people on the spectrum, the dreams I had for my Danny.
