If you have a child on the spectrum, you will have to a one point in your life, think about the future. Sure, if your child is young, you really don't know what the future has in store. I get it. But still, wouldn't it be nice to know that in case something happened to you, there would be a really good option for your child to live out his or her life?
The reason that most of us are so scared to think about the future is that, as a society, there hasn't been a large of group of people who have grown up to be adults with special needs. Yes, there are many people who have various types of developmental disabilities that are adults, but the large numbers won't happen until sometime between 2015 and 2020 when the children of the autism epidemic grow up. So, we don't know what to do about this. We are not prepared. It's so hard to think about something that doesn't exist.
Some of us middle-aged parents are also part of the special needs sandwich generation. That is, we have older parents who need some sort of caregiving, and we also have our child or children who need caregiving. In regards to our parents, we kind of have an idea what to do. Maybe we are not certain, but at least we know what the options are. We know that eventually it is possible that one or both of our parents will get ill or infirm and require some sort of care. Our society is somewhat set up for this. There are facilities that provide assisted living arrangements, while other provide skilled nursing. There are also agencies that provide in-home supports in the case that our parents stay in their home. These are all hard choices-not easy ones. They require lots of preparation and resources. But at least we are not shocked when the day comes that these services are necessary. And most of us are willing to talk about it at least among ourselves. Maybe not with our parents-that's a whole other story.
But when it comes to our kids, we don't have many options yet. Depending on where you live, there may be a group home option or a residential facility. At least that is what is available today. Who knows what will be available in the future. One of the biggest problems that I see with the group home or residential option is that they rely on government funding. I, for one, am not comfortable with a facility for my child that relies on government funding. I mean, how can I be sure that there will be these funds in the future. If the government cuts that have been going on recently are any indication of what may happen in the future, I am just not comfortable with relying solely on that option. Group homes and/or residential facilities receive their funding solely from the government. They do not fundraise, They do not have trusts that offer some cushion. Nothing. Just government funding. That is not good enough for me.
I have been told that my thoughts about creating communities for individuals with developmental disabilities is pie in the sky. Really? Is it that ridiculous to believe that one day, there could be a self-contained community that my son could live out his life in a safe, secure, well-funded environment?
My book (a fiction story on this subject) is now available on amazon.com as well as Smashwords. Soon it will be on all the other retail sites like Barnes and Noble. But you can read it now on any device if you buy it (for $2.99) on Smashwords. Actually, you can read an excerpt for free on Smashwords. Please read the book if you have a child with developmental disabilities. We have to start talking about this subject if we are to make any strides.
https://www.smashwords.com/books/view/181423
http://www.amazon.com/Always-Leave-Them-Laughing-ebook/dp/B008MAGIWE/ref=sr_1_1?ie=UTF8&qid=1342747312&sr=8-1&keywords=valerie+herskowitz+always+leave+them+laughing
13 comments:
This is something that families in the area I live have talked about. The actual getting it done is another story. It is a huge undertaking. I would love to see this happen, but right now I am managing my son's educational program and planning for when he ages out of school in 2014. We have been putting as much money away for him as we possibly can. I really would love to see this happen as a community that is safe and secure for him for the future. In the mean time he is staying with us as long as possible.
For single parents of severely handicapped kids, this issue is truly
terrifying, and I would love to know of any communal/co-housing
solutions that exist, especially when physical needs are very intense.
Hi there,
We had to get in touch - don't despair, there are fantastic services out there that have been set up by parents to create superior facilities for young adults with special needs. But it's more than just good environments, it's about supporting people to lead fulfilled lives and have the same opportunities as the rest of us (whatever their ability) whilst being supported to live in safe and secure surroundings.
After leaving school or college, all the structure and routine goes away and for parents of children with very complex needs it's almost impossible to support them 24/7 to lead full, happy and independent lives. As parents ourselves we know that parents are the best people to care for their children but we believe that in most cases when children have very complex needs, parents can limit development by keeping their children at home. And of course, what happens as parents age, which is inevitable and terrifying.
Not sure if you are in the UK but if you are have a look at www.createdbyparents.com our blog about all these issues - we set up the UK's largest parent led residential support service to offer people like our daughter bright futures and we set an expectation with other parents that we will do the same for their children.
Good luck, we will keep reading the blog and let us know if you are in the UK as we will post it on our site to spread the word.
Paul & Ann
No I'm not in the UK. But I am certainly going to check out your blog. But please post it on your site to spread the word. I think that parents can learn from each other regardless what country we are in.
Like you, I am also focused on my son's next step as he is aging out of the school system next year. But I think it can be part and parcel to the same goal. What we set up for him next year may be the beginning stages of the development of his eventual living situation. I do think I will see a community built in my lifetime that will house individuals in a safe and secure environment. You are right that it requires determination and a lot of us to brainstorm. But if we all work together, it can be accomplished. Even state-to-state, we learn from each other
Where do you live?
Hi, my cousin shared your blog with me after I shared my latest blog post http://gordanomore.com/inspiration-2/asperger-syndrome-independent-living-community/ I am looking for other parents such as you and I to share of their insight on this issue. Shire House will start in California, where I live now, but our goal is to create a model that could be replicated throughout the country.Thank you...Liz
Hey, we have a futuristic intervention program specifically designed to help parents monitor their child's progress in skill acquisition. Kindly visit http://www.shanesh.com
Eagerly looking forward to receiving your feedback.
Many thanks.
Tell us about your concept
Shire House
Shire House will be an independent living community for adults within the Asperger Syndrome. It could but will not be limited to being a transitional or permanent home. Here we will continue to reinforce independent living skills, social skills and life skills.
With skilled and appropriate staff we will continue to reinforce and encourage self management and self care. Support will be provided in skills that have not been yet mastered , such as driving, the use of public transportation, managing school and work responsibilities and help with general organization and structuring of ones day.
With the understanding that it is an adult community, respect and acknowledgement will be given to the individuality and creativity of each individual.
Other areas of reinforcement or learning will be the care and upkeep of ones living space, planning and preparing meals, shopping, money management (we will not be managing the individuals money) and scheduling and attending regular dentist and doctor visits.Social skills will be highly encouraged and practiced by helping to maintain family, friends, religious and social activities.
The process for planning and starting Shire House have begun. Our hope is to have our first home by the end of 2012. Our vision is to have apartment type communities.
If you or someone you know is interested in Shire House please email me directly at lzbthkane62@gmail.com. I would like to start a mailing list to keep those interested with any Shire House updates.
Sincerely, Elizabeth S. Kane, Director of Shire House.
I guess your site does not let post links...my website where you can follow Shire House is gordanomore.com
Thank you for letting me post. Liz
Hi Liz
Thanks so much for posting. I have been on your site several times. I am so excited about your upcoming community as I am of your blog.
Thank you for the words of encouragement, appreciate it very much.
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