Visit to Assemblyman Nathan Fletcher's Office

Yesterday I visited the local office of Assemblyman Nathan Fletcher to discuss proposed cuts to IHSS (In-home Supportive Services) and Medi-Cal. This was my second visit to the office of an elected official in my efforts at advocacy for the disabled community. (Last month I visited with Assemblyman Martin Garrick). I went on the visit with Rachel Vega and Connie Soucy, both from Access to Independence of San Diego. We met with a staff member of his to discuss our concerns. She seemed to be receptive to what we were trying to say. Though I am not a constituent of his, it is important to talk to as many elected officials as possible to let them know how devastating cuts to these programs would be to so many people with disabilities.

Cuts to these programs would make it harder, if not impossible for people with disabilities to continue to live at home and be a part of the community, and many would end up in the nursing home gulag. The nursing home industry would like this. More people would mean more profit for them, but it would do nothing for the quality of life and dignity of people with disabilities.

Though I understand the need for cuts to the California state budget, they can't cut everything. Cuts in programs that allow people with disabilities to be a part of the community would be devastating as well as more expensive to the state in the long run: warehousing people in nursing homes is far more expensive than giving people in-home care and support.

In-home care and support, though it allows people with disabilities to be a part of the community, and is cheaper than nursing homes, has many more benefits. In-home care and support creates thousands of jobs for health care workers and home health care aids; allows people with disabilities to hold jobs; it makes the quality of life and well-being of people with disabilities so much better; people with disabilities spend money in the community, and if they work, they pay taxes in addition to spending money. Also, making it harder for people with disabilities to live in the community would be a violation of the Olmstead Act of 1999, which affirms the right of people with disabilities to live in the community.

Governor Schwazenegger, the State Assembly, and State Senate, would be well-advised to reconsider devastating cuts to IHSS and Medi-Cal. I hope my efforts as a representative of the disabled community to protect it's interests, though small, will have some influence on the politicians in Sacramento.

Visit to Assemblyman Martin Garrcks Office

On Friday, April 16, I paid a visit to the local office of Assemblyman Martin Garrick(R) to discuss possible cuts to IHSS (In Home Support Services) and Medi-Cal (Medicaid). Since I am a constituent of his, it was important that he hear from one of his constituents who could be adversely affected by cuts to in-home care. I went with Rachel Vega and Connie Soucy, both from Access to Independence of San Diego. The Assemblyman was up in Sacramento, so we met with his staff.

With the serious budget problems in California there is a need to make cuts, but they are looking at these programs which are beneficial to people with disabilities to save money. IHSS, which is faced with cuts or even worse--elimination, is a very important program for people with disabilities and the elderly. It allows these people to get assistance so that they are able to live in the community, rather than being shut away and isolated in institutions. It also allows people with disabilities to hold jobs and to contribute to the community. I get my in-home nursing care through the Medi-Cal waiver program, which allows me to live at home and be part of the community rather than a nursing home. If Governor Schwarzenegger can think about making cuts to or even eliminating IHSS, there is no reason to think he won't put his sights on the Medi-Cal waiver program. I had to impress on them the importance of letting people with disabilities live in the community, be it through IHSS or the Medi-Cal waiver program.

I spoke to them about the benefits of a person with a disability living in the community through my personal experience. Since I was trached and vented almost sixteen years ago, I was able to live at home and not end up being sentenced to a nursing home. Being able to live at home, has allowed me to be a part of the community, to get out in the community, spend money in the community, and have a better quality of life. I told them people are more susceptible to all kinds of bugs and viruses in a nursing home and that it is much cheaper for a person to live at home than a nursing home. (With IHSS, for example, it costs about $10,000 a year for a person to live at home, versus $50,000-$70,000 a year for a person to be in a nursing home.). If the IHSS cuts occur home health care aides could lose jobs, or if the program were eliminated, over 24,000 people in San Diego County would be out of work. At a time of high unemployment in the state this would be unwise.


I felt that his staff was attentive to what we had to say. It is my hope that we made some impact, and that maybe what we said will help in the effort to save IHSS and allow people with disabilities to continue to live in the community and keep their dignity. This proposed cost-cutting action, if enacted would end up costing the state more in the cost of housing many more people in nursing homes (The nursing home industry would benefit from more inmates to take care of). It would make it harder for those people with disabilities who hold jobs and who rely on in home care to get them ready for work, to hold their jobs. This could make the 70% unemployment rate for people with disabilities higher, and without a job, they will not make money, and without money they won't be spending money or paying taxes. Some people will say that family members should help take care of their own. That would be true in an ideal wold, but family members can only do so much, especially if they have jobs and have other responsibilities. I felt good being able to do my part in the fight to allow people with disabilities to continue living in the community, without fear of ending up in a nursing home and losing their quality of life. The disabled community has made great strides in it's fight for independent living and it would be a shame to take such a big step backwards.

Disability Advocacy

For far too long I have sat on the sidelines and watched while others have fought for the rights and interests of people with disabilities. I have decided to get off the sidelines and enter the fight to protect the rights and interests of people with disabilities. It is time for me to make a contribution to society and to stop doing nothing.

I am getting involved in disability advocacy through Access to Independence (A2I), an independent living center (ILC) in San Diego and with the help of Rachel Vega, an organizer. Through her I am learning how to be an advocate. I am also getting involved in advocating and educating about assistive technology (AT). I got in to this also through A2I and the help of Maria White, the AT specialist there.

My involvement in disability advocacy will give me a purpose in life and something to be involved with. It also has the potential to help many people, not just myself.

Merry Christmas!

Hope everyone has a very merry Christmas. This is always such a wonderful time of the year. The spirit of peace, goodwill, and giving to others is in the air. If only this spirit could last all the year. I get great pleasure in the giving to others. This year, as I have been doing for the last few years, I donated to Toys for Tots. I like the the thought that the toys I donate will brighten the Christmas for children who may otherwise receive nothing. It is even more important in these hard economic times when the need is greatest.

The spirit of this season encouraged me to commit a random act of kindness. I cleaned out my closet to get rid of clothes I no longer wanted or needed. I had a nice, warm jacket and some shirts, and decided to give them to a needy person. Whenever I went out in my van, I looked out for a homeless person to give them to. I could not seem to find anyone. But, yesterday, Ernie (my nurse), and I pulled into a parking lot along the San Diego waterfront to wait till my brother's plane arrived at Lindbergh Field. As we pulled in to the parking lot we spotted a homeless man walking along the waterfront. He was all alone and was talking to himself. I had found, my recipient of my random act of kindness. Ernie, and I approached him and asked if he needed a jacket and some shirts. He said yes and we handed over the clothes. He was so grateful and couldn't stop thanking me. My small gesture was a big deal for him.

He was down and out with no permanent place to live, and living out of motels. We listened politely to his paranoid story that the government was after him because he was an assassin. Even though his story was crazy, we stayed a little while longer to listen to him. We took away some off his loneliness for a brief time It felt good for him to have someone to talk to. I felt great the rest of the day knowing that I had helped a person in need. It may have been a small gesture, but it brightened some one's day. That made it well worth it.

I would encourage all of you to commit a random of kindness, no matter how small a gesture it may be. It is a great feeling and is part of the spirit of giving of this season. But, all through the year this spirit should be encouraged.

Josh Winheld 1978-2009

Today I received some sad news. Josh Winheld, who I got acquainted with on the internet group, DMD Pioneers, lost his battle with Duchenne Muscular Dystrophy today. I didn't know Josh as well as others did, and chatted with him on the internet only a few times, but I did read many of his postings to the group. He was kind, upbeat, and didn't let his disability get in the way of enjoying life. Any time a DMDer is lost, it is a loss to all of us with DMD, and is a reminder of our own mortality. The wish for a cure for DMD also becomes even stronger. It is a reminder to all, not just those with DMD, to love and enjoy life while you can, for you never know when your time is up. Josh is now at peace. My thoughts are with his friends and family. He will be missed by all, and has left a positive impact on all who knew, or were acquainted with him.

Thanksgiving

I hope all my readers in the United States had a great Thanksgiving. My Thanksgiving was spent at home with the family. The best part of this holiday is spending time with my family. It is also a time for reflection on things that I am thankful for. Here are the things that I am thankful for: my supportive family, my good friends (online and off), my in-home nursing care (most especially Ernie who has taken care of me for fifteen years), that I live at home and not in a nursing home, the adaptive equipment that allows me to use the computer, my accesible van which allows me to get out in the world, my power wheelchair which allows me to get around, and my ventilator which has extended my life.

Here is an amusing sign, which I found on the blog, A Stellar Life.

Miramar Airshow

On Friday, October 2, I attended the annual air show at MCAS (Marine Corps Air Station) Miramar for the third year in a row. It was just as thrilling this time as the other times. There is always something exciting about the roar of jets overhead. As usual, the show was full of amazing aerial acrobatics. I didn't see every performance, but the ones I did see were well worth it. Among the performances I saw were, The Oracle Challenger, The Red Bull MIG jet, a legacy flight of an F-16 fighter jet and the P-51 Mustang fighter plane from World War II, The Patriot Team whose jets trail red, white, and blue smoke as they perform their stunts, a helicopter that performed some amazing stunts, such as loops (I had never seen a helicopter able to do loops, and have never seen one able to go upside down), and the AV-8B Harrier jet. It is always a sight to see a jet fighter take off and land vertically. But, the headliners of the show are the Navy Blue Angels. They put on another spectacular show. The excitement builds as the Blue Angels start up their engines and then start their slow taxi in pairs past the viewing stands and then they take to the skies with a roar. As usual, their performance was a spectacular demonstration of great skill and precision, The planes fly so close together at times that it appears that they might crash into each other or touch wingtips. It is an awe-inspiring sight to see the Blue Angels. I look forward to seeng them next year.

Dave Matthews Band

On Saturday, September 12, I saw Dave Matthews Band in concert at Cricket Wireless Amphitheater in Chula Vista. I have been a big fan for years, but this was my first time to see them live in concert. My seats were very good. They gave me an unobstructed view of the stage. It is great that they accomodate their wheelchair-using patrons very well.

The opening act was Switchfoot, a band out of San Diego. I had heard of them before, but had never heard any of their songs. They turned out to be a pretty good band. They performed a lively set which was well worth watching. During the opening act, the seats were sparsely filled. A lot of people were more interested in the main act. After Switchfoot left the stage, the seats started to fill up with eager fans. As we waited for the show to start, a large white sheet was hung from the light rigging. It hung down in front of the stage. Once everything was set up, the lights went out, and an incessant roar of cheering fans filled the air. The lights came on and the band members took the stage. As the band members took the stage, their distorted silhouettes were visible behind the sheet like shadow puppets. They started to play the opening notes of Funny the Way It Is, and with the first drum beat the sheet ripped away. The crowd went wild. After that they played, Spaceman, Don't Drink the Water, Proudest Monkey, Satellite, Shake Me Like a Monkey, Lying In the Hands of God, Seven, Crash Into Me, You Might Die Trying, Why I Am, Lie In Our Graves, Squirm, Alligator Pie, You and Me, Jimi Thing. They left the stage, and then came back for a three song encore of My Baby Blue, Grey Street, Time Bomb. They played almost all the songs off their new album, Big Whiskey and the GrooGrux King, but they also played a good number of songs from their other albums. They played one great song after another. The two and a half hours just zipped by.

The performance was energetic and upbeat from start to finish. Dave and his bandmates enjoyed performing for the fans, who enjoyed the performance as well. They are a band that loves to play together. They complement each other well. Dave Matthews unique vocals and acoustic guitair along with the awesome violin playing of Boyd Tinsley, powerful drumming of Carter Beauford, and the rhythmic bass playing of Stefan Lessard makes for a great sound. They were joined by a fine group of touring musicians: Tim Reynolds on electric guitar, Rashawn Ross on trumpet, and Jeff Coffin on Sax. Jeff was filling in for LeRoi Moore, a founding member of DMB, who died last year. It is a shame that I never got to see him perform with the band. But, Jeff did a fantastic job filling in. At one point he played an alto and a tenor sax at the same time. They did some great jams and Boyd had some great violin solos. The band is great on their albums, but they are even better live. It was a memorable concert and they are a band I would like to see again.

Quotes

"One good thing about music, when it hits you, you feel no pain. "

Bob Marley