THE GIFT OF SUPPORTED LIVING
It is so cool to see how Shawna has grown in independence since getting her own apartment. With help, she grocery shops, prepares her meals and cleans her apartment, watches what she wants on TV, has friends over, takes a bubble bath in candlelight when she wants to – basically does almost everything a normal adult woman living in her own place would do. Because Shawna’s speech abilities are very good, she can express her wants and needs adequately to her support staff, which helps them know what she needs from them.
What are these personal attendants like? AWESOME in most cases. All of my fears about what kind of people work in Supported Living Services was replaced with amazement for their dedication, spirit and training. Coincidently, Shawna’s brother Gary, now 29 years old, worked for a local SLS agency (not the same one Shawna uses) as a personal attendant to a young man with Downs Syndrome. Before the agency hired him they put him through a thorough background check, including drug-testing, and this is the standard screening procedure for all of the SLS agencies. Shawna currently has four different personal attendants, all female, who work various shifts 24/7. They are closely supervised by a program manager who conducts regular staff meetings that Shawna also participates in. I have come to highly value the members of Shawna’s staff, and have an enormous amount of respect for each of them. Think of Alice on the Brady Bunch, and you’ll have an idea of the importance these ladies have in our lives!
GO GIRLS!Shawna’s circle of friends and social life has grown vastly since she has been in Supported Living. I know I could not have provided this quality of social life for her in any other way. She and her best friend Cindy, who lives in the apartment upstairs from her and is also in SLS, are the founding members of a group they call “Go Girls”. A remarkable and creative lady named Nancy, who is an SLS attendant for Cindy, helped the girls start this group - another example of how amazing these people are!Go Girls is a group of developmentally disabled women who get together once a month to socialize, for picnics, pajama parties, movie night, and many other activities, facilitated and supported by their SLS staff. It started out to just be Shawna and Cindy, but soon others ladies (many in SLS, but some not) heard about it and wanted to join. Now there are over a dozen members and they even have an official Go Girls t-shirt. There’s also an official Go Girls operating manual – handwritten by Nancy and typed up by yours truly. I wouldn’t be surprised to see Go Girls expand into other chapters and become a state-wide or even a national organization some day!
What are these personal attendants like? AWESOME in most cases. All of my fears about what kind of people work in Supported Living Services was replaced with amazement for their dedication, spirit and training. Coincidently, Shawna’s brother Gary, now 29 years old, worked for a local SLS agency (not the same one Shawna uses) as a personal attendant to a young man with Downs Syndrome. Before the agency hired him they put him through a thorough background check, including drug-testing, and this is the standard screening procedure for all of the SLS agencies. Shawna currently has four different personal attendants, all female, who work various shifts 24/7. They are closely supervised by a program manager who conducts regular staff meetings that Shawna also participates in. I have come to highly value the members of Shawna’s staff, and have an enormous amount of respect for each of them. Think of Alice on the Brady Bunch, and you’ll have an idea of the importance these ladies have in our lives!
GO GIRLS!Shawna’s circle of friends and social life has grown vastly since she has been in Supported Living. I know I could not have provided this quality of social life for her in any other way. She and her best friend Cindy, who lives in the apartment upstairs from her and is also in SLS, are the founding members of a group they call “Go Girls”. A remarkable and creative lady named Nancy, who is an SLS attendant for Cindy, helped the girls start this group - another example of how amazing these people are!Go Girls is a group of developmentally disabled women who get together once a month to socialize, for picnics, pajama parties, movie night, and many other activities, facilitated and supported by their SLS staff. It started out to just be Shawna and Cindy, but soon others ladies (many in SLS, but some not) heard about it and wanted to join. Now there are over a dozen members and they even have an official Go Girls t-shirt. There’s also an official Go Girls operating manual – handwritten by Nancy and typed up by yours truly. I wouldn’t be surprised to see Go Girls expand into other chapters and become a state-wide or even a national organization some day!
PEOPLE FIRST, DISABILITY SECOND
Another awesome group Shawna participates in is “People First of California”. This is a grass roots multi-chapter self-advocacy, self-empowerment group of men and women with developmental disabilities, who learn to work together to find their voice within their communities. It is run by and for people with developmental disabilities. At the monthly meetings they discuss issues of importance in their personal lives, such as public transportation, housing, employment, voting rights, and many other aspects of living. They have several social events throughout the year, and a state-wide annual conference in Sacramento that Shawna loves to attend.
THE LANTERMAN ACT
The foundation of California’s services for its developmentally disabled is the Lanterman Developmental Disabilities Services Act, passed in 1969. It has undergone numerous revisions since then, but the basic premise is the same: It is the California law that says people with developmental disabilities and their families are entitled to the services and supports they need to live like people who do not have disabilities. This is this law that established the Regional Center system I described earlier, and the law that provides for Supported Living Services as well as just about every other service social Shawna receives.
THE CALIFORNIA BUDGET CRISIS
Without a doubt the Regional Center system, thus services for the developmentally disabled, will be impacted by the current budget crisis in California. It’s just not clear at this point how the relatively high-cost Supported Living system will be affected. I recently heard that Governor Schwarzenegger proposed revoking The Lanterman Act altogether, but his mother-in-law, Eunice Kennedy Shriver, asked him not to. She is the founder of Special Olympics and a strong supporter of rights for the developmentally disabled.
Nevertheless, the budget crisis is a scary thing and I can’t help but worry about what will happen if state funding is greatly reduced or eliminated and Shawna can no longer afford to live in her own home. Of course, as her family we will always be there for her, she won’t ever be homeless. But it would be a big setback for her that we hope will never happen. We’re watching this budget crisis with deep concern.
Nevertheless, the budget crisis is a scary thing and I can’t help but worry about what will happen if state funding is greatly reduced or eliminated and Shawna can no longer afford to live in her own home. Of course, as her family we will always be there for her, she won’t ever be homeless. But it would be a big setback for her that we hope will never happen. We’re watching this budget crisis with deep concern.
THE FUTURE FOR SHAWNA
As I’ve stated in the previous chapters, despite having a hemispherectomy 30 years ago, Shawna still has seizures, though certainly not nearly as frequent or severe as before the surgery. And she still struggles with the side effects of multiple anti-epileptic drugs. But medical science has greatly improved the hemispherectomy procedure in the last 30 years, and we have recently learned that there is a significant chance with another surgery that Shawna could become seizure-free. This is a prospect that is both very scary and very exciting!
TO BE CONTINUED SOON!
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