I’m not sure if I’ve revealed the specifics yet, but I know I’ve reported my intention to start a nonprofit organization. In fact, I intend to start two from the very start. So, why, you might ask, must there be two?
The goal of both nonprofit organizations is to seriously improve the quality of life available to and experienced by people with neurological disabilities and/or differences, regardless of the severity of those disabilities and differences.
In order to do this, you have to proactively address two different spheres of influence: advocacy and service delivery.
On the one hand, you must work at the (inter)national level. You must raise understanding, awareness, and acceptance. You must advocate change. You must influence society. You must influence legislation. And you must cooperate with other disability organizations to accomplish all of this. This is the advocacy sphere.
On the other hand, you must work at the local level. You must provide opportunities for enrichment (building daily living skills, building social skills, building work skills, building household management skills, building business management skills, etc.) that meet the specific needs and goals of each individual. You must provide opportunities for employment (career planning, job hunting, business start-up, seed money, and job or business maintenance) that meet the specific needs and goals of each individual. You must also provide opportunities for empowerment (self-advocacy skills, issue advocacy skills, opportunities to advocate in the community, opportunities to advocate at home or with family, opportunities to advocate in the workplace, opportunities to advocate at the regional, national, or international levels) that meet the specific needs and goals of each individual. And you absolutely must have a way to navigate the various programs, services, and opportunities that are available in the local community so that the needs of each individual can be met and their goals can be achieved in a cost effective manner so the maximum number of people can be served with the resources available while still meeting quality standards. This is the service delivery sphere.
If you put these two spheres of activity together under the same organization, you’ll get an ineffective, inefficient organization. If, on the other hand, you have both spheres linked but separate, you can produce a powerful, driven set of organizations that meet the complex needs of people with neurological disabilities/differences in both areas that matter most. The (inter)national organization will actively advocate at the topmost levels of society; the local organization(s) will actively deliver the individualized services that are most desperately needed by people with neurological disabilities/differences. There will, of course, be overlap by design: the national organization will “seed” the local organizations, develop appropriate policies, and distribute the capital necessary to “plant” the organizations, while also holding functional local organizations to the conduct standards set in the organization’s charter; the local organizations will “feed” issues and problems to the national organization, which the national organization is responsible for addressing as the advocacy organization, and they will also develop the skills and provide the opportunities for volunteers/employees to move from the local to the national level.
I’ve been around enough to know that the way things are done for people in need—in the U.S. at least—has a tendency to function in such a way that creates dependence without really solving problems. A set of services are provided and people who need help can choose among the options that are available. If enough people have unmet needs after those selections are made, then a new service is created to meet those needs. But people aren’t individuals. Decisions are driven by statistics, metrics, and policy goals. The idea isn’t to help people; the idea is to help demographics. The result is that people aren’t really helped in a way that satisfies their needs, facilitates their goals, or solves their problems. This occurs, in part, because these decisions are made far away from the people who are actually in need, by policy makers operating at the national and state levels.
My goal is therefore two-fold. Create a system and processes that work by actually working with individuals with neurological disabilities and differences. The system and processes will be flexible enough to be individualized, but also knowledgeable enough to leverage available resources to provide as help as much as possible, yet independent enough to fill in the gaps as needed. This will transform the quality of life for the people I understand best and am most passionate about; yet, it will also create a model that can be used by other organizations (the national organization would facilitate this) in order to truly meet the needs of populations that my program is not designed to address.
Usually this kind of holistic solution-oriented service delivery is restricted to select localities. A few local areas work together to solve problems. These solutions become case studies that are offered to other communities. The process is replicated, though the same results are not always achieved because the solution-oriented spirit of the process is gutted from the service delivery design. My hope is that by combining the local impact with the national reach, I can change this. So, there has to be two organizations, inextricably linked, but independently functioning. There must be two.