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October is National Special Needs Law Month

Established by the National Academy of Elder Law Attorneys (NAELA) to help those with disabilities and their loved ones better understand special needs planning, October is National Special Needs Law Month!  Let’s celebrate by highlighting some news and trends in special needs care and planning.


The Senate Aging Committee held a hearing in early October on the EMPOWER Care Act.  The Act would reinstate the Money Follows the Person Rebalancing Demonstration Grant (MFP) which expired in September 2016.  MFP helps the elderly and those with disabilities transition from institutions back into the community.  While the program does not provide financial assistance to make the transition, the federal funds are used to assist folks in managing their care outside of a nursing home, including case coordination, case management, and tele-health services. States that have participated in this Medicaid demonstration project will run out of funding by the end of 2018.  The Committee has voted to issue a report to the full chamber, in efforts to consider the Bill further. 

Minimizing Restraint and Seclusion of Disabled

A recent study evaluated the long-term effects of minimizing the restraint and seclusion of those with intellectual, developmental, and physical disabilities.  Over 12 years, the restraint of those with disabilities decreased by 99% and seclusion was totally eliminated at a Virginia facility.  What happened in response?  There was a 64% decline in client-induced staff injuries!  The study estimates that the savings of such policies equated to $16 million in associated costs from turnover, overtime, and workers’ compensation claims.  Also, the disabled clients saw an increase in client goal mastery of 133%!  Hopefully the traditional model of using restraint and seclusion to control and contain harmful behavior in those with disabilities will be reconsidered in facilities across the U.S.

ACE Kids Act

Advancing Care for Exceptional Kids Act (ACE Kids Act) was approved by the U.S. House of Representatives’ Energy and Commerce Committee in September.   About half a million kids across the U.S. are believed to have multiple health conditions that put them in a “medically complex” category, including those with autism, Down syndrome, and cerebral palsy.  Most of these kids are covered by Medicaid.  The ACE Kids Act would allow out-of-state specialists to obtain Medicaid reimbursement from the child’s home state without any additional paperwork.  Also, the child’s health records will be able to be more easily shared amongst providers via an electronic system.  Finally, the child’s “enhanced pediatric health home”, usually their main hospital, could be reimbursed for coordinating their care among all the various health providers that they see for care.  This will lead to a decrease in duplicate care, such as X-rays and other procedures.  The bill only covers children on Medicaid, but hopefully private insurance companies will follow suit.  The bill needs approval in both the House and Senate, along with President Trump’s signature, to become law. 

ACT Test Lawsuit

A lawsuit filed in August claims that ACT, Inc. is selling information about the test-takers disability status to universities.  ACT, Inc. administers the infamous ACT test, a standardized test used for college admissions purposes.  As part of the test, students are asked to disclose if they have disabilities that require “special provisions from the educational institution” and to choose a disability that “most closely describes your situation.”  The class action lawsuit, filed in U.S. District court in Los Angeles, alleges that universities hungry to manage their limited finances purchase this information to manage how many special needs students are admitted each year.  The lawsuit urges that this information is private and should be protected by law.  The suit is seeking injunctive relief as well as monetary damages.  

Chicago’s Yummy Idea

When state budget cuts in Illinois led to severe cuts in services for those with disabilities, a Chicago-based food writer, Nicole Schnitzler, had an idea.  She was inspired by her autistic brother, Daniel.  He has certain food rituals and favorite go-to dishes.  She wondered how a chef could make those sometimes-unusual pairings tasty to all eaters.  Doors Open Dishes was born.  Each month, a chef is paired with a client in a group home supporting those with special needs.  The chef gets to know the client and their favorite dishes, and then creates a new dish inspired by that client.  The dish is served at the chef’s restaurant and a portion of the proceeds go toward the home where the client lives.  Genius!  Hopefully this will inspire others to get creative and use their skills and passions to help communities serving those with special needs. 

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