Developmental disability resources

[A] Here are Yolo County resources for people with autism and other developmental disabilities:

1. Community and Employment Services (CES) is the name of the Davis division of Progressive Employment Concepts (PEC): http://www.progressiveemployment.org

2. Yolo People First (YPF): http://www.supportedlife.org/sacp/sacp.asp?pageID=pfYolo

3. Alta California Regional Center (ACRC): https://www.altaregional.org/

4. Above and Beyond Home Care (ABHC): http://www.abshomecare.com/about/

5. In-Home Support Services (IHSS): http://www.cdss.ca.gov/inforesources/IHSS

6. Supported Living Services (SLS): "On My Own"--
http://www.onmyown-web.com

7. Alternative Recreation: http://cityofdavis.org/city-hall/parks-and-community-services/recreation-for-persons-with-disabilities

[B] Here is a California statewide list of resources:

1. Regional Centers of California: http://www.dds.ca.gov/RC/RCList.cfm

2. UC Davis MIND Institute: http://www.ucdmc.ucdavis.edu/mindinstitute/

3. People First of California: https://www.peoplefirstca.org

4. State Council on Developmental Disabilities (SCDD): https://scdd.ca.gov

5. Self-Determination Program (SDP): http://www.dds.ca.gov/SDP/Index.cfm

6. Supported Life Institute: http://www.supportedlife.org

[C] Other resources:

7. Fly Brave Foundation: http://www.flybrave.org/mission.html

8. The AASCEND (Autism and Asperger Syndrome Coalition for Education Networking and Development) Job Club: http://www.aascend.org/?ai1ec_event=job-club

This is simply a partial list. It takes a lot of support to help a disabled person be a part of the community. Thanks to everyone who helps me, including my family and friends!

The Great American Eclipse 2017, and the Safety Issues that Prevented Me from Going to the Path of Totality

It's been a few months since the eclipse of August 21, 2017, and I have been quite busy getting the paperwork set up for my transition to living independently of family, and so haven't had a lot of time to update this blog. But now that it's Thanksgiving, I finally have a bit of downtime to do this.

A "total eclipse of the Sun" is an event where the Moon moves in front of the Sun's disk and completely covers it, thus making a relatively small area of the Earth go dark very quickly in the middle of the day. This darkness allows people to see a part of the Sun known as the corona, which is normally not visible because the Sun's glare washes it out. As many of you know, on August 21, 2017 such an event occurred on a narrow path that crossed the United States coast to coast, from Salem, OR to Charleston, SC. These events are very popular, and just about everyone who has seen a total eclipse says it was amazing.

On that day, I had an Astrozap Baader AstroSolar Safety Film solar filter set up on a 90mm equatorially-mounted refracting telescope--in John Barovetto Park in Davis, CA. The Moon moved in front of the Sun from where I watched, but it did not move completely in front. Because of my location on Earth, I didn't happen to be directly in line with the Moon and the Sun, and therefore did not see the amazing spectacle of totality that everyone talks about. Instead, the Moon moved partially in front of the Sun, covering about 80%. That might sound like a lot, but because of the strong adaptation of the human eye to changes in light level, the sky or the ground did not appear much darker than normal. The only thing unusual that I saw besides the Moon moving in front of the Sun was the sunbeams cast on the ground by shadows of trees, which were crescent-shaped instead of their usual circular shape. On my Facebook page, I have the photos of the Moon's disk moving in front of the Sun's, obscuring and revealing some sunspots that happened to be visible on that day.

After this great event, many of the people who travelled to the total eclipse ask me, "Why did you not go to Oregon to see the total eclipse? The partial phases are fun to watch, but they are nowhere near as awe-inspiring or as spectacular as totality." Seeing a total eclipse is a dream of many astronomers from childhood, and is quite fun for the majority of non-disabled Americans, but if total eclipses continue to be managed the way they are, then for people who have special needs the experience is quite likely to be more negative than positive. In my case, the functional limitations that prevented me from seeing the eclipse in Oregon were my anxiety and my dependence on transportation to evacuate from emergency situations. I will detail how these limitations prevented me from seeing the eclipse below.

As many of my readers may already know, I have a list of comorbid conditions, including autism, ADHD, panic attacks, acid reflux, and a disorder called Paradoxical Vocal Fold Motion (PVFM) which can cause me to have episodes of breathing difficulty. Because of the severity of my autism and ADHD, I cannot drive and require protective supervision in order to stay safe. If my family or current staff cannot evacuate me out of a disaster zone, then the Safely Out program designed by Citizen Voice, Inc. allows me to designate someone to ensure that I get out safely. Whenever I travel, I also ensure that I have a quiet space, such as a motel room, away from crowds so that, if I need to, I can reduce stress to prevent a panic attack.

Normally, I can find such resources easily. However, a total eclipse, because of its rarity and beauty, draws many people from around the world into a relatively small region of the Earth--often many times more than civilizations in the area typically have. This means that lodging in the area sells out years before the eclipse, and there are often many more people than the emergency resources in the area are designed to handle. The traffic also often brings the highway systems to a standstill because they are not designed to handle the volume of people wanting to see the eclipse. Many towns in Oregon prepared for this by stationing emergency personnel at various outposts throughout the eclipse area, but had a major disaster occurred, such as a wildfire the size of the ones here in California, there would not have been enough resources to evacuate the millions of people who were there to see the eclipse. Those people would have been entirely on their own, and disabled people who needed assistance to evacuate would have perished. As wonderful as totality is, it is not worth risking anyone's life in order to see.

What would it take for me to be able to enjoy the amazing spectacle of totality without fear of being trapped in a disaster zone with my disability?

To make a total eclipse accessible to people like me is going to require the system to change from the status quo. For starters, the advice that many people have if lodging in the path of totality is unavailable or unaffordable is to camp or use an RV. However, my anxiety attacks can be severe and can also trigger my PVFM. So, for me to see a total eclipse, my needs would be as follows:

1. Proper indoor lodging. When I'm traveling, I need a place away from crowds to de-stress if I need to. Camping does not provide sufficient isolation from crowds, and so is not an option for me. 
2. A few days to stay before and after. The traffic during an eclipse can trap people on the road for hours without food or water, and I would need to avoid the anxiety that would be triggered by such a situation, so I would need to reserve lodging from a few days before to a few days after the eclipse.
3. Advance planning. Because I would need lodging to realistically see a total eclipse, I would have to reserve at least 1 year in advance, before the lodging sells out, and I would also have to pay the exorbitant room rates that they charge during eclipse events--very difficult for a disabled person on a tight budget.
4. Teamwork with others to communicate my needs to healthcare workers or other government officials if an emergency happens to my mom or dad. I hope to befriend members of People First Oregon, Oregon's Special Olympics, and other support groups who share my interest in planning a disability-safe Eclipse 2023 viewing experience.

The good news is that an annular eclipse (an eclipse where the Moon's disk moves directly in front of the Sun but is too small to cover the disk completely, so it appears as an extremely bright "ring" around the Moon's disk) occurs in southern Oregon in 2023, and a total eclipse occurs in the United States in April 8, 2024, this time starting in Texas near Austin and moving up through the Northeast. That's far enough in the future that I might be able to achieve those dates, especially if governments improve their protocols for managing the numbers of people that totality draws.

Currently, I am saving up for the eclipses of 2023, and possibly 2024 if I have the resources for it by then. When I go to the eclipse path, my staff and I will need to collaborate with disability resources within the path, to ensure that they understand my needs and will do what they can to ensure that disabled people are safe in the path of the eclipse. Hopefully, these eclipses will turn out to be a fun, rewarding experience.

What developmentally disabled people can do

Developmentally disabled people can lead healthy lives, just as people can who are not disabled. I have created a YouTube channel about disabled people who can do things that non-disabled people can do in order to stay strong. The first video is a series of interviews taken after the Supported Life Institute's Statewide Self-Advocacy Conference--a conference where disabled people can learn not only to receive accommodations from non-disabled people, but to defend their rights. The channel is located at:

https://www.youtube.com/channel/UCzQr0nvTzdlsVAZ3i10FMWg

What is a "circle of support"?

 When disabled people are talking about their life situations, we often hear a lot of buzzwords thrown around–"supported living", "vendors", etc. One term people tend to hear very often when they're talking to disabled people or social workers is the individual's "circle of support". So, what is that, exactly?

A "circle of support" as we usually define it simply consists of the people who are available and trustworthy to help us when we have issues.   Everyone, not just disabled people, need this kind of help. Many of us turn to family members or therapists when loved ones die or financial problems arise. A lot of the people you see begging at the street corners are there because they lack proper support for their grief or other issues. Our circle of support is essential because, at some point in our lives, we are faced with problems that are not humanly possible to solve without support. But for disabled people, a circle of support is even more essential for daily life.

 People who have disabilities have limitations on what they can do that most non-disabled people don't have. This means that, in order to function in society, we need other people to provide the support necessary to fulfill our needs. For example, a blind person relying on sound to navigate his/her environment cannot drive, but in everyday modern life, we often need to commute somewhere to pay our bills. So the blind person has a driver to take him/her to work. That driver is a part of the blind person's circle of support.

Because our circle of support is integral to our daily life, we disabled people keep track of who is helping us very closely. In my case, I have a (confidential--please don't ask) document consisting of the names and addresses of all of the people who are part of my circle of support, including doctors and family members. This list is distributed to everyone who is on it, so that when situations arise, they can coordinate.

People who hear the phrase "circle of support" should understand that it is not just something that only disabled people need. It is something that is essential to everyone, and that most individuals have--a set of trustworthy people that they can turn to when situations occur that require help. For most people, they're simply family or friends who help them when something goes wrong, and they live life mostly independently. But for us disabled people, our family and close friends are as essential to  our participation in the community as oxygen is for life.