How can parents of a disabled child be assured that monies they have worked hard for and saved will not prevent their disabled child from accessing government benefits such as Medicaid or Supplemental Security Income once the parents are deceased?

To prevent this from happening, Congress passed the ABLE Act in December, 2014. This Act modeled after 529 College Savings Account creates tax favored accounts for children and adults whose disability occurred before age 26. These accounts, modeled after the Section 529 College Savings Accounts, will not have their assets count against the disabled child when applying for need based government expenses such Supplemental Security Income and Medicaid. 

Of course there are limits such as only the first $100,000 in each ABLE account would be disregarded. Also, the accounts can receive only the amounts up to the annual gift tax exemption. 

Each state must pass enabling legislation. Over half of the states have done so. Pennsylvania has not. Although enabling legislation was introduced in the State House February 12, 2015 and in the State Senate April 23, 2015, the process has not been completed. These Bills now reside in various committees. Contacting your state legislator to move this enabling legislation along will hasten the day that qualified disabled Pennsylvania residents can benefit from this legislation.