See this lovely little girl?
I would love to save for her future, just like parents across the country save for their children. The problem is the way our service system currently works. If she comes into more in cash assets than the federal government allows, she will be stripped of her access to Medicaid and her ability to receive Social Security funds.
We can set up what’s known as a Special Needs Trust to save for her future, but they cost thousands to establish and have strict rules about how they work. It forces us to jump hurdles most families will never even see, and for many families in the disability parenting community, the start up cost of this kind of trust is prohibitive.
Other families get to simply walk down to their bank, drop a hundred bucks into a savings account, and move on with life without wondering if that little pot of money will some day prevent their child from seeing a doctor. Other families also have the opportunity to open a 529 savings account for their child – into which they can deposit pre-tax dollars and use as a safe place for the money to grow.
We want to save for our children. We dream of futures where our children might use the service system, but are not limited to what it offers. We see independent living, we see home health nurses and supports of our children’s choosing, we see transportation to school and work and volunteer sites. We see these beautiful futures but for many of us, we need to save money to supplement the service system to help our children achieves lives of their choosing. (And don’t get me wrong – us families do save. It’s just that there are roadblocks before us that are unique to the disability community, and it is simply unjust.)
The ABLE Act is sitting in Congress right now. It has bipartisan support in both the House and the Senate. In fact, it has so many co-signers in both houses that if it came to a vote today, it would pass without question. (74 Senators and 370 Representatives!) It needs our voices – parents, grandparents, friends, self-advocates – to get going.
The “Achieving a Better Life Experience” (ABLE) act would allow individuals with disabilities to have a savings account that can be used toward living expenses, education, medical expenses, assistive technology, job training, and other supports.
The best thing about this act? The money in this account does not count against the individual’s cash asset limits if he or she is drawing Social Security Disability Income or receiving Medicaid.
This is absolutely revolutionary.
For decades, individuals with disabilities – capable of working, wanting to work – have been forced below the poverty line due to stringent rules regulating SSDI and Medicaid. The cash asset limit in place to continue participating in these programs is an absolute joke, and essentially prevents individuals with disabilities who require Medicaid for health insurance from obtaining meaningful work for meaningful pay. Individuals whose disabilities make it difficult to work a standard 40 hour work week instead must live off SSDI, which is a poverty-level amount. Those asset limits also prevent individuals from saving up money to own their own transportation, to hire support workers of their choosing, or to even do something as common place as pay for a vacation. Think of how little you could do, how limited your choices and future would be if you could never have more than $2000 in your name at any time.
This act would make it possible for families of individuals with disabilities, and the individuals themselves, to save money in this special account so that they can live a more meaningful life of their choosing. These accounts are meant to supplement SSDI while still keeping the person eligible for Medicaid.
Here are a few more benefits of the bill:
- will be regulated at the federal level so these accounts can cross state lines without problem
- can be held in the individual’s name or in a parent’s name
- money can be used at any point in the individual’s life – does not need to wait until adulthood
- if a family has already been saving money in a traditional savings account, money can be rolled over without penalty
If you’re interested in taking action, there are a few things you can do.
First, check to see if your Representative and Senators are already sponsors of the bill. If they are, send them an email or call them to thank them for their support. Find your House representative here and your Senators here.
If they aren’t sponsors, send an email or give them a call. You may feel like your legislator is too busy to talk to you or read your email. Rest assured that staffers are important players in this, and a conversation with a staffer is still a step in the right direction. Also, each office counts the number of “contacts” they get for or against a bill – so your voice will still be heard!
- If you like to tweet, disability advocates across the country are using the hashtag: #passtheABLEact
- If you are a blogger, consider posting something about the act and rallying others to action.
- If you like to use Facebook, consider posting something about the act.
- If you are part of a parent group, support group, or other disability-related organization – send them the info.
- Sign this change.org petition asking Congress to take action.
There are a lot of different ways you can let Congress know you support this bill. Ready to take some action?