October 2, 2009

The World of Not for Profits - Part 1

Many, many doors have opened in our lives as parents of a child with special needs. We have learned to appreciate opportunities that we would not have had without Alex. This journey through Alex’s life has enriched us in countless ways, including our involvement in the not for profit world. As I said before, this was not the world we had imagined in our lives as young newlyweds, but it is a life I am grateful I am not missing.

In this journal, I have briefly mentioned the importance of some of the organizations in which we have become involved. These not for profits have provided and still provide benefits to us all. Before Alex joined the world, my involvement with not for profits had been as a volunteer or a donor - not as a recipient. Now I have learned and appreciate the difference!

By definition a not for profit – or nonprofit - is a charitable organization. This means that all income that is generated through the sales of services, or goods goes back to run the operation. In most cases, this does not cover the operating costs, as services are often donated and/or greatly discounted. Historically, staff salaries are low and benefits not provided. It takes a very special person to want to work for a not for profit.

Most, if not all, not for profits are funded by individuals, grants or other charitable institutions such as foundations. As you can imagine, funding for most non profits have become scarcer and more difficult as our economy suffers. Many of these organizations have had to cut staff and provide fewer services as we try to get through this recession. It is unforgivable to me, that in our world, the organizations that can help the most are the ones that also suffer the most.

Yesterday I talked about NADS and how much that organization has meant to us. As a reminder I am including an excerpt from their web site.

NADS is the oldest organization in the country serving individuals with Down syndrome and their families. It was founded in Chicago in 1961 by parents who chose to go against medical advice and raised their children with Down syndrome at home. Their pioneering efforts have made it easier for later generations of individuals with Down syndrome to be accepted by their families and communities, to develop their capabilities, and to work towards independence. Our mission is to ensure that all persons with Down syndrome have the opportunity to achieve their potential in all aspects of community life. We offer information, support, and advocacy.

The direct support we provide to families through our Parent Support Program, our Mentoring Program, the Work Experience Program, and other individualized services is at the core of our mission, but we do not have the staff or the resources to provide those services outside of the Chicago metropolitan area. However, many of our other services are available to a wider community, including our conferences, our products and publications, our website and online Discussion Forum, and the information about Down syndrome we provide. Our members can be found throughout the United States—and across the globe.

NADS was there for us - from the moment Alex was born until the time we left the Chicago area. I know NADS would still be there for us if we ever need anything at all.

Last month I talked about the karma that got us to WindWalkers. WindWalkers is a therapeutic riding program located on a beautiful ranch in our valley. Alex rides in the program every week and has developed a close relationship with the staff as well as the horses. Riding has strengthened Alex's core and given her confidence around animals she never had before. Please refer back to my “Horses and Alex - coincidence?” entry for more about this!

The following is from the WindWalkers web site:

At the core of our organization is a family-centered approach that recognizes that a challenge or disability affects the individual and impacts every member of the family. At WindWalkers, we strive to be a center of the highest quality dedicated to improving the physical well-being, behavioral development, and emotional health of clients and families. WindWalkers uses the movement, power and intuition of horses to enhance lives.

Without argument, not for profits are run by passionate and caring people. These people live to serve the mission of their organizations, and WindWalkers is the epitome of this. In this case, the horses are as talented and as caring of the clients as is the staff.

Volunteers are the key to the success of any not for profit as dollars are not available for large staffs. So as a way to give back, my family volunteers for WindWalkers as much as possible, and we LOVE it!

I am on the Board and Courtney is a side-walker. This means that she walks beside the horse when one of the clients is riding. It is a safety feature used in all therapeutic riding programs. Tom was recently recruited as a film maker - yes we even use 14 year olds to market our programs - and John is called when ever we need to lift heavy things (except horses).

WindWalkers is an intregal part of our lives, just as NADS was. The family centered approach that began with NADS has been reinforced by WindWalkers and has become who we are as a family.

Tomorrow I will share more about Challenge Aspen and the Special Olympics - also equally important to our lives, Alex's happiness and her future.

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