Thursday, July 27, 2017

The May Conference Went Great!-- pics and a video

Hi all,

First, the May conference went great!!!  Afterward, David started filming friends and asking them for their reactions to the conference events. He then put this film onto his brand new You Tube channel, called "Developmentally Disabled People Live Healthy Lives".

You can watch it here:
https://www.youtube.com/channel/UCzQr0nvTzdlsVAZ3i10FMWg

Secondly, here are some "pics" from the conference:



















Friday, April 21, 2017

Conference of, by and for Disabled Adults May 5-6!

In this new age of "Self Determination", people with autism and other developmental disabilities must learn to defend their own rights, not only rely upon help from non-disabled people. So, please spread the word that the 22nd Annual Western States Developmental Disability Self-Advocacy Conference - an opportunity for intellectually and cognitively disabled adults to share strategies for surviving modern adulthood - will take place at the Crowne Plaza Hotel Sacramento on May 5-6 2017!
This event to promote self-advocacy skill-building, information-sharing, and networking of, by and for adults with developmental disabilities will be hosted by the Supported Life Institute, the State Council on Developmental Disabilities (SCDD) Sacramento Office, "SEIU CA. Dev. Disabilities Council", Disability Rights California, and the "George F. Kelso Library".
Although the location is Sacramento, California, ALL developmentally disabled self-advocates from the western states of the U.S.A are welcome. Attendees are traveling to this conference all the way from Hawaii, Nevada and Arizona! If you look over the "Sessions" link below, you'll see that this conference will offer sessions that instruct and inform about self-advocacy skills in the community and at work. The speakers are primarily people with autism and other developmental disabilities, with only support staff as facilitators, not as leaders.
Here are the links:
1. Session information:
2. Registration:
(Not all Regional Center clients qualify for their registration fees to be funded by the Regional Center. Please contact your Service Coordinator for information).

Sunday, April 2, 2017

"A Community Conversation of Inclusion"

March was Developmental Disabilities of Awareness Month in the USA. Sunday, April 2nd is World Autism Awareness Day, celebrated by the member states of the UN, and in the United States, April is Autism Awareness Month. Therefore, it's appropriate timing that our community of Davis, California, USA should gather together on the evening of April 3rd to discuss ways that we can seek to better include people with all types disabilities at school; in business and government centers; and in places of work, worship, working out, and leisure. This event is called "A Community Conversation of Inclusion", and the organizers request an RSVP at the Facebook page. Here's that link:

https://www.facebook.com/events/1854976518078741/

Thursday, March 16, 2017

Why Would Someone with a Ph.D. still need SSI? Don't Scientists Earn a Lot of Money?

A lot of our friends are scientists without (apparent) disabilities, and for some of them, their only assistance-dependent disabled friend is David. So they understandably wonder why David, with a Ph.D. in physics, needs SSI.

On the other hand, some of David's social workers also ask:
"Why does David need low-income housing, SSI, IHSS, and other government aid? Online trend websites claim he could make about $80,000 as a postdoc researcher."

The answer involves not the money from SSI itself, as much as the other resources which are only available to those who qualify for SSI. It also involves some Orwellian style mathematics, so get those thinkin' caps on, folks!

Before I go further, I want to be clear that I'm very grateful to live in the nation that cared enough for its poor disabled citizens to have created the SSI system. I'm not angry at the system, and am certainly happy that thousands of SSI social workers, who could have earned higher incomes elsewhere, have dedicated their careers to this program.

However, the current SSI program needs drastic updates, because it was created at a time when Savant Autistic people were warehoused in large institutions, and as in the film Rain Man, their academic and career potential was entirely ignored.

Today, autistic adults desire and legally have the right to attend college, pursue career dreams, and live in their own homes. SSI wasn't built for this, so we need to rebuild it.

So, here's the math:

David needs 24/7 protective supervision to stay safe at home and in his community. The employees providing this protection earn minimum wage- $10 per hour. In a 30 day month, that's 720 hours times $10, totaling to $7200.
$7200 per month, before food, rent, and other basics.

The annual wage of 24/7 personal attendant staffing is $7200 times 12 months, totaling to $86,400.

So, imagine David accepting a fellowship for $80,000. After paying his staff, he'll be in debt $6,400 before he pays food, rent, basics.

You see, a disabled person must qualify for SSI in order to have access to the tax-funded agencies that pay the paycheck to the staff that he or she needs to function at work and in the community. And in order to qualify for SSI, the disabled person must maintain a low income.

Just how low of an income is that? Well, according to the calculator at "CareerSource Brevard", David can earn about $1500 per month and still maintain SSI eligibility so as to receive the support services that he needs to survive.

Yes, you read that right, people--David Nisson, one of the biggest computational physics brainiacs around, must keep his monthly income below $1500 in order to pay for the staff he needs. To use a phrase common among my physics friends, "That feels counter-intuitive".

So, speaking of physics, one must wonder how many potential physicists out there dependent on SSI to fund their staff and other medical needs have no choice but to abandon their science careers?

Fortunately for David, things look hopeful. Right now, David is focused on learning basic life skills, in hopes that he will someday function well enough on a daily basis to live and work independently. If things work out the way they have for some others, David will be able to work without the need for so many hours of help. So far, his progress is showing promise of this.

However, many more mathematically savant autistic people who need full-time assistance for the rest of their lives are poor than are rich. Therefore, their staff and family members whose job it is to manage their funding need to stay constantly aware of keeping their income below the threshold for losing SSI.

What other option is there?

Reform efforts are underway, but the wheels of change move slowly. One step taken relatively recently is the new ABLE act. This program won't help David's monthly income situation, but it will be a big help for the many college students with autism and other developmental disabilities who have families who can afford to contribute to the ABLE accounts. California will have ABLE accounts available this coming summer, 2017. Please learn about CalABLE here:

http://treasurer.ca.gov/able/

Tuesday, March 7, 2017

March is Developmental Disabilities Awareness Month

March is Developmental Disabilities Awareness Month. Here's a link with information about our National Association of Councils on Developmental Disabilities:
NACDD

Here in California, our Council is the State Council on Developmental Disabilities (SCDD) at:
SCDD

Autism is a type of developmental disability, and David and I are very grateful for the efforts of people teaching him how to self-advocate, and who have helped him feel welcome in his community.

Please learn the history of developmental disability life and advocacy in your area, and consider ways to help welcome people with autism, down syndrome and other developmental disabilities into your workplace, worship place, and community.

Sunday, March 5, 2017

H.J. Res 57

Just got this in my inbox from Tonia Ferguson at Autism Society:


We need your help! The rights of students with autism and other disabilities are at serious risk. Last month, the U.S. House of Representatives passed H.J. Res. 57, a congressional resolution aimed at overturning the Department of Education’s regulation implementing the Every Student Succeeds Act’s (ESSA’s) core requirement that schools be held accountable for the performance of all students, including students with autism. Congress has never before voted to overturn an education regulation. The Senate will vote on whether to overturn the ESSA accountability regulation soon – perhaps later this month.
When the Education Department initially issued a regulation strengthening the ESSA, clarifying what the law requires, and specifying timelines for states to develop an accountability plan, the Department sought public input and received over 21,000 comments from parents, students, educators, advocates, and others about what the regulation should say. Despite a comprehensive review process with involving key stakeholders, on February 7, the House of Representatives passed H.J. Res. 57, overturning the Department’s ESSA accountability regulation. Department of Education oversight is critical to maintaining the spirit and letter of ESSA.
Please call your Senators today and urge them to vote “no” on H.J. Res. 57! Call the U.S. Capitol Switchboard at (202) 224-3121 and ask to be connected to your Senator’s office.  
Tell your Senators to vote NO on H.J. Res. 57, and to protect the rights of students with disabilities!
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Thursday, February 9, 2017

Supported Living Services-- Transition!!

It's time for David to transition from living with family (me) to having his own home, possibly with roommates. So, with my support, he's interviewing the "Supported Living Services" agencies, as well as potential support staff. We're also touring apartments, and, as David is dependent upon SSI to pay his bills, he's completing paperwork for "Section 8" housing.

So, this is a busy time for David! I have accompanied him to lots of interviews with apartment managers, as well as taking tours of potential apartments. He did a super job of describing his needs to these housing professionals. Then, we wrapped up the day with a dinnertime interview with a potential "support staff".

Here is where a lot of ignorance exists for families of children, teens, and young adults, with an understandable attitude of "Gee, we've got so much on our plate to deal with right now with K-12 education, etc! Let's put off planning for adult living situations until later".

However, delay is a bad decision because the triangle of low income (SSI-dependency), limited housing options, and the need for support staff is such a great challenge for families of disabled people to plan for, it's very, very important that early on, they start planning for the time of transition. It's never too soon to plan finances, and to start saving!! Here is a link to the California Department of Developmental Disabilities (DDS) website regarding "SLS" (Supported Living Services):
http://www.dds.ca.gov/SLS/Index.cfm

Please share this website with friends who have family members with autism or other another developmental disability.
Another resource to share is the California State Council on Developmental Disabilities (SCDD):
https://www.scdd.ca.gov/

So, you might be asking "What does Mary mean by support staff"?

These are the social workers who provide care for adults with aide-dependent developmental disabilities, so that they can live independently and participate fully in their communities. They provide support in whatever form the developmentally disabled people need it-- life skill coaching, transportation assistance, reminders of what to wear, do, or bring with them while in the community, and above all, protective supervision to prevent danger and injury.

This is what I do for David now. Soon, this is what will be provided by David's new staff so that, like his friends his age, he can live with a roommate in his own home. Wow! An exciting transition. We'll keep you posted!

Thanks for reading, and please feel free to contact me if you've got questions, or would like referrals-- anything!