Saturday, May 25, 2019

Sustainability of a Good Idea and Community Action Plans

In the social sciences a lot of terms are floating out there — person-centered planning, life cycle planning,  self-determination, and many more. A common component of these terms, when it comes to a person with a disability, is the person’s direct involvement in decision making that affects him or her. This is driven by federal laws, regulations, and funding. Underlying this trend and federal push is years of experience and research that contrast what occurs when individuals with disabilities are and are not at the table when decisions are being made about them. Good things happen when they are involved and not so good things happen when they are not. The positive effect of their participation, their perspective and that of their advocates needs to be extended to tables where larger community decisions are being made.

There is a lot going on in education these days. Central to these activities is the role of the school in the community. Two initiatives involve federal funding for Statewide Family Engagement Centers  (SFEC) and Full Service Community Schools (FSCS). The Office for Innovation and Improvement in the U.S. Department of Education, where these grant programs were housed, recently has been merged with the Office of Elementary and Secondary Education, so old links don't work. However, if you Google the grant names, you will be taken to the webpages for these two grant programs. We here in Hawaii have a Hawai‘i Family Engagement Center and have put in a proposal for a Full Service Community Schools grant. Underlying these two federal initiatives are requirements for collaboration from parents, employers, and community organizations. Included among the intended beneficiaries are children with disabilities. It is clear that these two initiatives are after structural change that will be sustainable. The question is how do we get there?

It is clear that when you bring a diverse group together that can agree on a common goal, as demonstrated through “communities of practice”, amazing things can happen. Individuals are energize, empowered, and committed to achieving a consensus-driven outcome. But, what is also needed is a plan, strategies, resources, a way to judge progress, regroup, and share. Perhaps it’s time we coin one more phrase — a Community Action Plan — a CAP could be for an individual, a school, a neighborhood, a town, a region, or a state. It could focus on one thing like a transition plan for when a student leaves high school; a big thing like finding entry level jobs and promoting them or expanding early learning for three-and four-year olds; or a complicated thing like increasing the capacity of health care professionals to interact with and serve people with disabilities effectively, expanding supported living housing options for people with intellectual and developmental disabilities, or expanding accessible public transportation.

Doing any of this will not be easy. Any group will need to have at the table — people who can help articulate the goal; people who know what strategies are likely to work or who can bring an expert in to advise the group; people who have or can find funding and develop a budget;  people who can shape and carry out progress evaluation;  and people who can craft messages and inspire partnership among implementers.

If every community of practice or group recognizes that it not only must agree on a common goal, but develop a CAP for it, then it is more likely it will achieve its goal and sustain the goal’s longevity and provide a replication guide for those with similar interests.

Thank you.

Common Grounder

Wednesday, May 22, 2019

Quality of Life and Disability Rights: A Complex Intersection

Brushing one's teeth is a common occurrence. A person decides when and how often to do it, how long to do it, how much force to use, what method to use, whether to go electric or stay manual, how much force to use, and what toothpaste to use. If the person is a very young child or a person with significant disabilities, someone else may brush or supervise brushing. If the individual were three or five years old, she may care less about toothbrushing. The child will comply or tolerate supervision. At some point she learns that it is important and makes toothbrushing part of her daily routine. If the person has a significant disability and must depend on another person for toothbrushing, the tooth brusher may assume, since he is doing it, he decides when, how often, how long, how much force, what method, type of brush and toothpaste to use. So even with something as basic as toothbrushing, the element of rights comes into play. If the tooth brusher is "in charge" of toothbrushing decisions, what else is he in charge of?

Disability rights, making sure they are respected, may be the last human rights frontier we need to face. People with disabilities need to be at every decision making table to offer their perspectives on social, economic, and legal justice. But first, they must be offered a quality of life that allows them to make choices about how they brush their teeth. If they are not exposed to options and an opportunity to indicate preferences in matters of daily living, if they are not seen and participate in the whole range of social interactions others experience in the community, and if they are not given the chance to negotiation and compromise on equal terms with others, they will not be able to be a meaningful player at the decision making table.

Our solutions are not just to teach people with disabilities about their rights but to reshape the thinking of those who support, educate. and interact with them. We don't know what we don't know. Each of us -- both disabled or not yet -- needs to be shown how to respect rights and practice inclusion. It's not going to just happen without intervention. It is a progression. It must evolve, influenced by religious, cultural, ethnic, and familial factors.

Those of us who think we know what disability rights are and know how to teach them must recognize that in certain situations we may need to start with toothbrushing. We must work with the tooth brusher and the person whose teeth are being brushed by someone else. If we can build in the elements of choice, preference, negotiation, and compromise into the daily routine of tooth brushing, we can transfer consideration of these factors to other situations and build a common understanding of disability rights among people with disabilities, their families, outside care givers, governmental agencies, and policy makers.

As we all work to promote inclusive societies, here in the U.S. and elsewhere, let us be mindful that we should resist the temptation to parachute in with a solution that we are convinced will work. First, we must establish credibility and trust on the ground with individuals with disabilities, families, and community leaders. Second, we must work to improve the quality of life for the individual with a disability. And then, third, we can secure all the right people at the table and begin to pursue capacity building through education and systems change through transformative policy development to achieve sustainable evidence of disability rights.

There is a lot of work out there that needs to be done in educating people about disability rights and inclusive societies. Lets be thoughtful, patient, and smart as we go about it.

Thank you.

Common Grounder