My daughter Adrienne is about to ‘age out’ of the Snoqualmie Valley School District Special Education Program that she has been in since she was 3-years old. She is now 21. She has had thousands of hours of life skills training, education and support that we are so grateful for. Going forward she will have none.
For any neuro typical child this is an exciting time: to go to college, start a career and a family. For a person with a developmental disability, it is very different. Adrienne is very excited for her future, as I am, but it comes with immense stress and worry.
Adrienne got a job with the help of a government program and a job coach. She works one day a week for 2 hours, which we are so thankful for as he isn’t ready for any more hours. Typically, though, from what I hear from Adrienne’s friends, they work a couple days a week for 4 hours. More than likely, a person with disabilities will never make more than the minimum wage.
55% of adults with disabilities live with their parents and most are unemployed. Adults with developmental disabilities are eligible for Social Security help from the government. They receive a little over $700 per month for their living expenses, including rent. If they have a job their payments are reduced.
Can you imagine what it would be like to live on $700 per month? They can never own more than $2000 or their benefits will be cut. They say you can own a home or car, but how is that possible when you can never have more than $2000 in the bank? They are kept in extreme poverty their whole lives. Though ‘Special Needs’ Trust Funds can help protect any inheritance they receive.
Parents find it difficult to work while raising their child so there is a huge loss of income from that decision. Often times it isn’t a choice, you financially couldn’t afford to work and find the special care your child needs while you were away. Not only do you have to prepare for your own retirement but you have to plan for theirs too. What will happen to them when you are gone?
Adrienne will never drive and will always need support, as she will not be able to live on her own. As a parent this is a huge worry for the future.
I am not writing this for pity. It’s just to raise awareness and understanding of what it’s like to raise someone with a disability. You hear so much about the young children with autism, etc., but they all grow up to be adults and the disability never goes away. I believe we have a social crisis with how we support these individuals.
Here is my request…
If you are in a position to hire or recommend a person with disabilities, please do so. Their days need to be filled with meaningful activities. They want to have a purpose – just like anyone else. How we treat and include these individuals teaches others how to accept them as well.
Friendships are difficult for people with disabilities. They are so often misunderstood. If you know someone with disabilities, take time to be their friend. They don’t have many. If you know a parent of a child with disabilities, take them out for a drink, they need it! Thank you for reading this and caring for these special people in all our lives.
It takes a village.
Tracy Neether
Comments
Thank you so much for posting your story. So very true. That is an excellent idea that you are requesting!!!! Thank you for giving the awareness and spreading information to people who don’t know.
Tracy,
Your letter certainly nails so many challenges for special needs people and their families. I’m not in this category, but feel blessed to live in Ephrata, where our community has really stepped up and many special needs people are being hired by employers, and not just for a couple hours a week. Aging out is happening everywhere and most people are clueless about what happens to these people and the lives of their families. We have a very active Autism group locally, which has helped many of us to more fully understand some of these needs for those kids, as well as others. I hope your letter goes viral!
Danna, in October 2014 President Obama signed the ABLE Act. Thanks to that act, people with disabilities can set aside up to $100,000 in tax-advantaged accounts much like the 529 college savings accounts without losing eligibility for benefits. It’s certainly not a panacea for all the problems adults with disabilities have (difficulty in finding meaningful employment, friendships, opportunities to continue learning, etc.) but it allows families to set aside some money for the future.
Tracy-
That was a much needed, well-written request for acknowledgement regarding the reality of what life is like living with the challenges of continually caring for a child with special needs. I would love to take you or Adrienne out any time….you are both amazing women.
Sincerely,
Jennifer, RDH @ James Browning,DDS
Tracy –
Great job laying it on the line for the general public to understand just how grim the future feels for kids like ours. Our daughter is 14 and in that last few years, I’ve begun exploring and getting information about what happens with job training. I was shocked to find that even with all of the job training, so many kids only work a handful of hours per week. Seems almost worthless when working so little. That needs to change for kids who are able to contribute so much more!
Thank you tracy for sharing your story. It is representative of thousands more children and families in our area!
I want to clarify that this is in no way a criticism of the job vendors/coaches that help people with disabilities in supported employment. They do a great job in employment sourcing, support and training for the people they serve. We are so grateful for Adrienne’s job! She couldn’t work more than 2 hours right now even with more support. She’s not ready. This is not about my family specifically its about the bigger picture of all adults with disabilities. They are mostly unemployed and unable to live on the resources they have. We must do better on their behalf.