Guest guest Posted November 22, 2011 Report Share Posted November 22, 2011 I am not sure where there would be a negative on this. If the able act protects our children what would be the downside on this. Dear Friends, The December NDSS webinar will be " ABLE Act 101 - Everything You Need to Know About the ABLE Act " on December 7th at 1pm Eastern. The Achieving a Better Life Experience (ABLE) Act of 2011 (S. 1872/H.R. 3423) was just introduced in the 112th Congress in both the U.S. Senate and House of Representatives. When passed as a law, the ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary's employment, and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. During this webinar, you will learn the nuts and bolts about the ABLE Act and how you can take action to get the ABLE Act passed into law Presenters: * Ariale, Chief of Staff, Representative Ander Crenshaw (R-Florida) * Debes, Legislative Assistant, Representative Ander Crenshaw (R-Florida) * Steve Beck, Parent; Board Member, National Down Syndrome Society; Board Member, Down Syndrome Association of Northern Virginia * Madeleine Will, Director, National Down Syndrome Society * Sara Weir, Senior Policy Advisory, National Down Syndrome Society Slides from the presentation will be posted to www.ndss.org.During the webinar there will be time for Q and A. Please feel free to share this webinar and the login information with anyone you feel may be interested in the presentation. Please register to attend this webinar. Seats are limited: https://www2.gotomeeting.com/register/608740234 Warmly, NDSS National Down Syndrome Society666 Broadway, Suite 810 New York, NY 10012 800-221-4602 www.ndss.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2011 Report Share Posted December 5, 2011 I have 's permission to share this information... Ellen Ellen Garber Bronfeld egskb@... [psnt] ABLE Act I am curious about how the members of this list feel about the ABLE Act. I have been following this legislation for years and it has gone from awful to bad - maybe misleading. This has been particularly difficult for me as I am a great supporter of the ARC and many of the organizations behind the ABLE Act. Even so - I am very disappointed in how they developed this legislation and are promoting it. In addition, I am fearful that they if enacted this flawed legislation will do more harm than good. Let me spit out my concern. As someone I very much respect has said - the rhetoric in support of this bill is full of half-truths and quarter truths. With all hiding the ball going on in the world - I count on the ARC and the similar disability organizations I support to tell the whole story. This bill has significant problems, and also requires a payback for any Medi-Cal used. Unfortunately - I have not seen a single communication from the ARC that discusses these points. On the list of issues - the biggest to me is the Medicaid lien. Parents and consumers are being led to believe that the ABLE account functions like a 529 plan. In fact - it does not - and the perceived value is illusory. The tax free growth touted can be easily achieved with tax free investments in a special needs trust without the need for subjecting the funds to a lien. This is no magic bullet. I may have missed it - but I have not seen a single communication from the ARC that even mentions the Medicaid lien. Quite honestly, the ARC and other organizations should warn families not to use these accounts without being fully counseled by a trained attorney about the consequences and risks of ABLE and the alternatives. Secondly, there are situations where the bill as written will not guarantee Medicaid eligibility. In addition - for consumers with significant cognitive disabilities - there could be great problems. For many of us that have dedicated our lives to protecting persons with disabilities including significant dedication to studying public benefit laws and when possible advocating for reform - this bill misses the mark in my opinion. As a supporter of the ARC I have no problem with the ARC taking a position I don't agree with. Even as flawed as the ABLE Act is - I would see it as just another tool in extremely limited situations. I do have a problem of the ARC putting their prestige behind the a piece of legislation without fully making the full scope of act know to the would be supporters, both in enacting this legislation and assuming passage encouraging its use. I am hoping that the special needs trust industry can work closer with the disability community - and while we need new tools - this is not the answer - as I see it. W. Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 Thanks for posting about ABLE and for reminding me to share with the group that I signed on in support of the ABLE Act recently, on behalf of IPADDUnite. Let me explain. I’ve read the bill (will upload to Files) as well as ’s and others’ concerns as detailed in the previous posts. I thought about all the people whose kids are young, one of them has special needs, the others are typical, and they’ve opened college/future savings accounts for the ‘typical’ kids but have no awareness of the need to save money for their child with special needs – for that period of time between when they age out of special education at age 18-22 and between the time their parents die and the estate funds a special needs trust. The advantages of establishing a special needs trust are too numerous to mention. We encourage everyone to open a special needs trust at as early an age as possible, when wills and estate plans are happening. Disclosure: ’s wasn’t established until she was about 10 years old; we had wills, yes, but she wasn’t diagnosed until 5 years old with autism – then followed about 5 years of just coping/learning – without the internet, I might add! – and then we got the trust documents signed around age 10. It’s currently funded with about $10,000 bequeathed by her grandmother; the majority of it will only be funded upon our deaths, by our estate. I am all about ‘what do we do in the meantime?’ – right? So how come I did the responsible thing and opened a Special Needs trust to be funded upon my death, but didn’t plan/save for all these ‘in between’ years, between aging out of special education and the day we die? Did I not think there would be expenses? Did I assume/hope that public funding would come through and we wouldn’t have significant out-of-pocket expenses? Without a Medicaid Waiver to help pay for day-to-day expenses of job coaching, community PSWs, day programs, etc etc....how does the average Joe parent afford to pay for these things that contribute mightily to a quality of life post 18 or 22? SSI is $674/month. My own daughter’s expenses run about $3,000+/month. Her brother is in college. We had a college savings account/529 set up for Mark. But not for . My read of the ABLE account concept is that it might help some people address this savings ‘gap’. By normalizing the idea of saving for your child’s future, my hope is that more people WILL save. ABLE accounts would not replace the need for a Special Needs Trust. One does not replace the other. ABLE accounts are not without risk of Medicaid payback or Social Security Disability benefit reductions. It’s not a perfect solution for many! That said, if it advances the conversation about the need for families to SAVE, and if it’s helpful even to a limited number of people across the country, I thought it was worth a letter of support to help keep the bill moving through Congress. My understanding is that the bill won’t be taken up again until at least after the first of the year. And with this Congress, who knows what will happen? We’ll pass along more information as we get it. Take care! Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 The reason I am posting so much on the ABLE Act is to keep everyone informed and in addition, if you are speaking to Federal legislators, this could be a good topic for discussion. There are obvious problems with this bill in Illinois and our U.S. Senators and Representatives need to understand that the bill, in it's current iteration, will not benefit most of the individuals with I/DD in their state. Ellen Ellen Garber Bronfeld egskb@... RE: ABLE Act Do you have some time to talk tomorrow (Tuesday) afternoon? ___________________________________ Marty Ford, Director, Public Policy Office The Arc 1825 K Street NW, Suite 1200, Washington, D.C. 20006 Phone: 202.783.2229 | Toll free: 800.433.5255 Fax: 202.534.3731 Email: ford@... www.thearc.org Quote Link to comment Share on other sites More sharing options...
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