Hey special needs parents – There is something coming down the pipe line that is KIND of a big deal. Just last week a bill passed the house that will effect you and your child, so perk up those ears, listen in, and get involved if you can because there is still a little ways to go.
When we found out that Dylan was going to have special needs we had no idea what her potential was. Children like her range from almost fully typical to not compatible with life and there are many children in between. We knew that Dylan would like rely on us her entire life, financially, among other things and we sought council and advice on how to go forward. The one major piece of advice we were given, that everyone who has a special need child was given? Do not have a savings account or any assets in Dylan’s name because it would jeopardize her ability to get government assistance when she turns 18.
Government assistance like social security to help with the hefty medical bills, respite care, and most importantly for many, medical insurance.
Are we duping the system by not having savings for Dylan? If we have a saving account for each of our other children, why not Dylan? Is there something shady about this?
Let me spin this another way… Dylan will be dependent on our care for the rest of her life, no doubt about it at this point. She will never hold a job, live independently, or earn her own money. But there are a lot of children out there who will. They will not “need” the government disability assistance. Yet, can the work positions that they hold, the positions that give them pride and independence, cover a rental payment? Indisputably no. They will also likely depend on their parents for supplemental income, at the very least.
And without a doubt, they will need medical insurance.
The truth is, many people with disabilities are outliving their parents, the very people they rely on for financial assistance. Due to not being able to have a savings accounts and assets, there is a giant gap in the ability for special needs adults to care for themselves financially. Parents risk the medical assistance their children depend on if they leave them money in the even they do pass away.
Well all that might change soon. Just last week the U.S. House of Representatives passed the Achieving a Better Life Experience, or ABLE act, by a vote of 404 to 17. This will allow people with disabilities to establish savings account, similar to 529 college savings plans, where interest on the account will be tax free. The account holder can save up to $14,000 annually up to a total of $100,000 without jeopardizing their government provided medical benefits. This is a BIG DEAL people!
This bill has been in the works for years and as I mentioned, it has a little ways to go before actually coming to fruition. Read more about how it got started in this USA Today article. More information on the ABLE act and what you can do to get it passed can be found on the website for the National Down Syndrome Society. (It’s a little overwhelming!)
I hope you are all as excited about this as I am. It will be a huge step forward for special needs adults who are trying to achieve independence.
Image courtesy of foto76 at FreeDigitalPhotos.net