What are the core principles of KIDD Forever?
It all begins with an idea.
Before answering this question, it may be worthwhile to mention some preexisting organizations that are similar in nature. First, lets talk about several organizations that are local to Washington State.
Bridge of Promise explains on their web site that they “enrich the lives of teens and adults with developmental disabilities” by “offering community-based day programs for adults ages twenty-one and up who have transitioned out of high school.” This is a wonderful organization, and they are working to expand their reach and now offer programs in three locations in the Puget Sound area.
Tavon Center is in Issaquah; Washington and it is now over 15 years old. They provide programs that allow over 80 members to have “friends, community and a sense of purpose.”
Tiera Village – I don’t think I could summarize them better than their web site’s “About” page. “Tierra Village is a Leavenworth, Washington-based Non-Profit connecting Adults with Developmental Disabilities to Nature and Community. We are a part of Tierra Learning Center. We specialize in Residential, Educational, Recreational and Employment Services.” Clearly the scope of what Tierra Learning Center is doing is somewhat more expansive and encompasses residential services as well as other aspects of the integration of people with intellectual disabilities into the broader community.
But the title of this post is “What are the core principles of KIDD Forever?” What exactly are the specific ideas that guide us as we build and expand the services KIDD Forever provides.
Day Habilitation?
Yes, we want to provide “Day Habilitation” services, but if you are looking for an official definition of what exactly “Day Habilitation” is, it’s surprisingly hard to find on any federal agency web sites. The closest federal definition I could find was on Medicaid.gov near the bottom of the page. There are several good studies that mention “Day Habilitation” by that name. Here is one. What about the Washington State DSHS sites? Well, you might be surprised to find out that Washington State is one of only a very few states that provides no day habilitation services in any of the DDA waiver programs. Most organizations who are providing these types of services are doing so using DDA contract funding for some of the other services such as “Respite Care.” The Medicaid.gov page referenced above talks about “adult day health services, habilitation (both day and residential), and respite care,” but no “Day Habilitation” specifically. And surely a “day” programs would differ in nature and character from one that was part of a residential program. KIDD Forever has, as part of its long-term plans, a residential program, but this will take a while to implement.
There was a recent attempt to get this “Day Habilitation” added to the waiver services, in the last Legislative session, but it failed in the “half session” that is just passed. If you would like to read a proposed description, it is posted at: https://app.leg.wa.gov/committeeschedules/Home/Document/263223
But again, this is more of a general description of the HCBS Medicaid service as it is envisioned by its proponents, and not a conceptual understanding of its benefits to a whole and fully realized human being.
Global Scope
To get closer to a definition of our core principles we must look to an older movement originating in Europe but spreading across the globe, including North America.
This is rightly called a movement because of its sheer global reach. It was founded by Dr. Karl König, who was fleeing the Nazis in the lead up to the second . It was largely created as a reaction to the horrific treatment of intellectually disabled people in Nazi Germany. Dr. König in turn was inspired by “Anthroposophy,” the teaching of philosopher and educator Rudolf Steiner. “The Camphill pioneers developed the idea that if each member contributed his or her own special gifts and talents, then the needs of each person could be met in a cooperative community.”
Current Camphill sites are primarily farm-based, but that does not describe the full scope of what happens at those sites. The concept here is a truly integrated community where both typical and differently-abled individuals learn and grow together.
Now we are starting to close in on our fundamental conception of KIDD Forever and the benefits we hope to achieve for all our KIDDos. To explain further, it may be time for a little history about Adam’s and Nyree’s (the principal founders of KIDD Forever) family.
Our History with Nigel
Our son Nigel had a very hard time in school. His diagnosis would be an autism spectrum disorder, but today he would be described as Level 3 on the spectrum. This means he has severe anxiety and severe sensory difficulties, which can lead to unpredictable and aggressive behavior. In school, he was often restrained and isolated in a “safe room” (which is a closet with a window in the door and a button the releases the lock). By the time Nigel was in high school we had partnered with Washington Autism Alliance to change the law in Washington to restrict indiscriminate uses of restraint and isolation in public schools.
By the time Nigel had exited “transition services” (which end the year the student turns 21), we realized that…was it! No more enrichment services would be mandated by the state. Because Nigel was not considered suitable for supported employment, we were told that he should try some of the other services offered on the DDA waivers. In particular “Community Engagement” was suggested. The entire concept of state support for IDD individuals in Washington state is based on “employment.” If an individual is not high enough functioning to be a candidate for supported employment, they are facing a severely diminished list of options provided by the state.
Whenever we would seek access to programs or special needs communities, we would be told that Nigel’s “unsafe” behaviors made him unsuitable, and often the next suggestion would be for him to practice inclusion in a different program. The problem is that those services are NOT guaranteed by DDA. Parents are simply given a list of approved providers and (if you can find any in your area) it is up to you to meet with the provider, and it is up to the provider to decide whether they want to work with the client or not. This is true for all the non-residential DDA waiver services. Whenever these providers met with or began working with Nigel, it inevitably led to a door being shut on our faces. Either the provider was suddenly full or “the female providers can’t handle someone as big and strong as Nigel.”
We soon realized that if we wanted to give Nigel access to a community where he could grow through meaningful experiences and friendships, we would have to create it ourselves.
But still we haven’t answered the question, “What are the core principles of KIDD Forever?” We’ll now give it a try:
Every individual is unique and uniquely valuable in their gifts and abilities.
Every individual deserves an environment where they can learn about their potential and grow in their skills and their abilities to share themselves and contribute to others.
Every individual deserves the right to practice those skills away from their primary caregivers and families. It is certainly true that our KIDDos are best known by their families, and that is exactly why they must (after a transition period) be allowed to get away from those who provide the familial support that (perhaps unknowingly) limits their ability to grow and discover new frontiers and strengths.
One very sad result of our waiver-based system is that most IDD individuals spend most of their time at home and with their primary caregivers and families. Our state provides precious few publicly supported appropriate community and social environments.
The state makes no serious efforts to create mixed environments where IDD individuals can experience true integration with neuro-typical and intellectually normative community members.
Every individual’s primary caregivers and family members deserve a break (respite) from providing the care that the individual has likely required most of their lives. The superhuman efforts required from and strain experienced by family members are taking a huge toll on our society. Severely degraded quality of life for caregivers is leading to significant mental health issues. The worry and stress that parents feel when they are away from their loved ones is matched only by the stress they feel when they spend too much time with them. Parents and caregivers deserve to feel confident that their loved ones are spending their days engaged in enriching and meaningful activities that are appropriate for their individual levels of development and interests.
Physical activities in primarily outdoor or community settings is the best way to develop skills and new interests and the best way to develop positive self-worth and self-realization.
I think it’s very important to state here that the order of these principles or core beliefs is not necessarily the order of their importance. Just as every individual and every family is unique, different points will have a different importance for each participant.
In the coming months, we want to bring tangible and (if possible) video examples of the kinds of activities that we hope to offer with specific evidence of the positive changes that can be made in our KIDDos’ lives. We expect to receiver our 501(c)(3) status withing weeks of the publication of this article. After that, intensive fund-raising will begin so we are able to provide the “hub” location in Southern Pierce County, where there is tremendous need for these kinds of services. Depending on the successes of our fund raising efforts, we could be open as early as mid-summer 2025.
In gratitude and respect,
Adam Burns - President: KIDD Forever