Yesterday I was blessed to meet another special needs mom as we both waited for our boys to be finished with camp for the day. Her son is around the same age as my oldest. We talked about the struggles of having a child who is legally adult but in no way ready to "adult" on their own. There is a bond, an affinity, between special needs parents that is hard to explain. Whatever our race, creed or politics, it doesn't matter. We share a commonality in our daily life experiences that few can comprehend, much less understand. So we sat and commiserated for close to two hours, both of us ignoring the work we had brought to accomplish while waiting.
I felt a distant rumble as I walked away from that conversation. It felt like the start of an avalanche, high in the mountains above, as you stand in the valley below. You stand in the warm spring air, the sun shining upon you, knowing that if you don't take emergency measures NOW you will be buried under tons of snow and ice. You start shouting and running, trying to warn everyone surrounding you of the frozen fury that is about to rain down upon them. But they look at the green grass and blooming flowers, feel the warmth of the sun and shake their heads. You are Chicken Little crying"The sky is falling". You point out the distant rumble that is getting closer every minute. They laugh and say it's just a train going by.
So you do your best to fortify what you can and try to save your family. But there has never been an avalanche in this valley. There is no evacuation route. There are no shelters. You furiously start throwing together what you can with the limited time and resources that you have. Off in the distance, you see a person here or there doing the same as you are. You know if you could combine resources you would all have a better chance of survival. But there is no time. So you nod at each other, offer a slight wave and continue with your own preparations. All the while the rumble is getting closer and it is picking up speed.
There is an avalanche coming to your community and it is coming quickly. My oldest was diagnosed at the forefront of the huge increase of ASD diagnoses. We could spend all day today and tomorrow discussing the WHY's of it all. But really the why doesn't matter at this point because the results are the same. In 1992 1 child in 150 was diagnosed as autistic, by 2006 that number was 1 child in 59 (statistics by the CDC https://www.cdc.gov/ncbddd/autism/data.html). Children born in 2000, when we just starting to see the rise in diagnosis, turn 18 this year. They become legal adults. However many, like my oldest, are not capable of being independent yet. Legally, we as parents lose the ability to manage their medical and psychological needs, to help them navigate the legal world, to have a much needed voice in their education. Many of the services they currently receive they will age out of when they hit the magical 18 year mark. We as parents have the choice to get partial guardianship (a complicated and hard process), sue our own child for full guardianship (which is an expensive and heart wrenching experience) or just throw them on the mercies of the very ill prepared system.
Many of you are reading this and are thinking "That's sad but it doesn't affect me or my family. I've got my own crap going on." Oh my friend, you could not be more wrong!! There is an avalanche coming for you and there is no place for us to direct it.
- The U.S. cost of autism over the lifespan is about $2.4 million for a person with an intellectual disability, or $1.4 million for a person without intellectual disability.
-35 percent of young adults (ages 19-23) with autism have not had a job or received postgraduate education after leaving high school.
I felt a distant rumble as I walked away from that conversation. It felt like the start of an avalanche, high in the mountains above, as you stand in the valley below. You stand in the warm spring air, the sun shining upon you, knowing that if you don't take emergency measures NOW you will be buried under tons of snow and ice. You start shouting and running, trying to warn everyone surrounding you of the frozen fury that is about to rain down upon them. But they look at the green grass and blooming flowers, feel the warmth of the sun and shake their heads. You are Chicken Little crying"The sky is falling". You point out the distant rumble that is getting closer every minute. They laugh and say it's just a train going by.
So you do your best to fortify what you can and try to save your family. But there has never been an avalanche in this valley. There is no evacuation route. There are no shelters. You furiously start throwing together what you can with the limited time and resources that you have. Off in the distance, you see a person here or there doing the same as you are. You know if you could combine resources you would all have a better chance of survival. But there is no time. So you nod at each other, offer a slight wave and continue with your own preparations. All the while the rumble is getting closer and it is picking up speed.
Many of you are reading this and are thinking "That's sad but it doesn't affect me or my family. I've got my own crap going on." Oh my friend, you could not be more wrong!! There is an avalanche coming for you and there is no place for us to direct it.
- The U.S. cost of autism over the lifespan is about $2.4 million for a person with an intellectual disability, or $1.4 million for a person without intellectual disability.
-35 percent of young adults (ages 19-23) with autism have not had a job or received postgraduate education after leaving high school.
-It costs more than $8,600 extra per year to educate a student with autism. (The average cost of educating a student is about $12,000)
-In June 2014, only 19.3 percent of people with disabilities in the U.S. were participating in the labor force – working or seeking work. Of those, 12.9 percent were unemployed, meaning only 16.8 percent of the population with disabilities was employed. (By contrast, 69.3 percent of people without disabilities were in the labor force, and 65 percent of the population without disabilities was employed.) (all statistics compiled by the Autism Society http://www.autism-society.org/what-is/facts-and-statistics/)
For the last 18 years, we parents have absorbed much of the cost of caring for, treating and getting therapy for these kids. We have 5 kids with disabilities in our family. Even with that large number of diagnosed dependents, we did not receive a single dime of public assistance, with the exception of services provided by the public schools, until 4 months ago. Now we are only getting help because some amazing people found loopholes to get my kids further services that they desperately needed but we could in no way do on our own. I am not complaining. I don't begrudge my children the care they needed. We are parents. We simply did what good parents everywhere do, made it work for the sake of our kids. However, all those very needed therapies, interventions, etc we pursued for our children, on our private insurance or simply out of pocket, quickly begin to go away when they turn 18. Unless a plan is in place, our kids will lose all those services that make them as functional as they currently are. Without the necessary support, our kids begin to spiral out of control and we don't have the legal authority to step in to help. Quickly those young adults become a burden on the already dysfunctional mental health and legal systems. YOU, the taxpayer, will pick up a much more expensive tab because nothing was in place to help these kids transition into adulthood safely. The incredibly frustrating and heart breaking part of this is that the entire spiral is completely avoidable!! Keep in mind, we aren't talking about a couple of kids here or there. We are talking about 1 in 59 kids all coming of age within a few years of one another!!! That is a huge strain on an unprepared and at times willfully ignorant system.
"How can we prepare?" you ask. Write your legislatures! Demand that they begin to fund transition services for special needs kids coming of age. We need educational outreaches for the parents of these kids. The process of getting any kind of guardianship is confusing. Setting up trusts for your kids future is extremely complicated, time consuming and expensive. Ask lawmakers to stream line the process for parents to get partial guardianship of their disabled children. Volunteer to be a mentor for a teen with special needs. Donate time or money to the underfunded, private organizations that struggling to give services to the multitudes coming their way. There is an avalanche coming your way. We few advocates are not enough to stop it from crushing not only our kids but also the entire system.
For the last 18 years, we parents have absorbed much of the cost of caring for, treating and getting therapy for these kids. We have 5 kids with disabilities in our family. Even with that large number of diagnosed dependents, we did not receive a single dime of public assistance, with the exception of services provided by the public schools, until 4 months ago. Now we are only getting help because some amazing people found loopholes to get my kids further services that they desperately needed but we could in no way do on our own. I am not complaining. I don't begrudge my children the care they needed. We are parents. We simply did what good parents everywhere do, made it work for the sake of our kids. However, all those very needed therapies, interventions, etc we pursued for our children, on our private insurance or simply out of pocket, quickly begin to go away when they turn 18. Unless a plan is in place, our kids will lose all those services that make them as functional as they currently are. Without the necessary support, our kids begin to spiral out of control and we don't have the legal authority to step in to help. Quickly those young adults become a burden on the already dysfunctional mental health and legal systems. YOU, the taxpayer, will pick up a much more expensive tab because nothing was in place to help these kids transition into adulthood safely. The incredibly frustrating and heart breaking part of this is that the entire spiral is completely avoidable!! Keep in mind, we aren't talking about a couple of kids here or there. We are talking about 1 in 59 kids all coming of age within a few years of one another!!! That is a huge strain on an unprepared and at times willfully ignorant system.
"How can we prepare?" you ask. Write your legislatures! Demand that they begin to fund transition services for special needs kids coming of age. We need educational outreaches for the parents of these kids. The process of getting any kind of guardianship is confusing. Setting up trusts for your kids future is extremely complicated, time consuming and expensive. Ask lawmakers to stream line the process for parents to get partial guardianship of their disabled children. Volunteer to be a mentor for a teen with special needs. Donate time or money to the underfunded, private organizations that struggling to give services to the multitudes coming their way. There is an avalanche coming your way. We few advocates are not enough to stop it from crushing not only our kids but also the entire system.
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