What You Need to Know About Special Needs Advocacy and Money

Nothing ever seems to change unless people force the change to occur. An advocate is a person who speaks, writes, or pleads for his/herself or on behalf of another. We have seen fierce advocacy in the special needs community throughout history, and this advocacy began with families fighting for the civil rights of their loved ones. This fight for civil rights continues within the organizations that continue this advocacy role today.

What You Need to Know About Special Needs Advocacy and Money https://www.autismparentingmagazine.com/special-needs-advocacy-money

The year 2017 has seen a large advocacy outcry over the healthcare reform bill in the US and the changes that healthcare bill would have made to the funding of Medicaid. The advocacy work in this area has halted those changes (at this time) from being implemented. This result illustrates the power of the special needs community as we come together as one.

Advocacy has also meant changes to the rules surrounding 14c employment. This 14c Employment, a longtime feature of the Fair Labor Standards Act, allows employers to apply for certificates that allow them to compensate individuals with disabilities at a rate less than minimum wage. The community knows these employers by another name: sheltered workshops. The special needs community, in general, advocated for the elimination of 14c rules because it was considered unfair and the individuals worked in a non-integrated work environment because fellow workers were also diagnosed with a disability. It is interesting to note that many individuals that work in these sheltered workshops take great pride and satisfaction in their work and in the friendships they build with their fellow employees.

Rosemarie Hughes, mother to 51-year-old Chris Cook, who has been working in a sheltered workshop for 25 years, said, “He likes being there. He’s a creature of habit. He likes knowing what to expect.”

The issue is not that sheltered workshops are being phased out, but what will happen to those adults like Chris Cook who will no longer have a place to go during the day. What will the family do? As the political, economic, and labor landscapes change for those with special needs, it becomes even more apparent how critical it is that families consider these macroeconomic changes and how they impact the daily lives of their children. Families must prepare and plan for new options that may arise for their children’s work life, housing situation, transportation, and changes to funding streams that will help pay for those items. It is apparent that although Medicaid changes were stopped in July 2017, the government will most likely still need to change that system, and if they do, families need to have a plan in place so their children still can live enriched lives. The same is true as the option of 14c employment diminishes. Families need to think ahead, create a vision, and begin to build a framework in which they can support their children’s needs regardless of the changes that occur at a macro-level.


For more information on how to prepare for the future, be sure to contact a financial advisor who specializes in serving families with special needs. A Special Needs Plan is driven by what is called Unleash L.I.F.E.™L.I.F.E. meaning Lasting Independence For Everyone™. This is accomplished with education, action, and support in the creation, implementation, and continued monitoring of a specifically designed lifelong and integrated plan for your family of parents, caregivers, your loved one with special needs, and their siblings.

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This article was featured in Issue 67 – Preparing for Adulthood With Autism

Ryan Platt

Ryan F. Platt, MBA, ChFC, ChSNC, completed his Special Care Planner Certification in 2005 at the American College in Bryn Mawr, PA, in which he received advanced training in estate and tax planning, special needs trusts, government programs, and the emotional dynamics of working with people and families with special needs loved ones. In 2013, he went on to complete the Chartered Special Needs Consultant designation. A pioneer in his field, Ryan is one of only a few planners certified through Massachusetts Mutual Life Insurance Company (MassMutual) and the American College in Special Care Planning in Charlotte. He is the founder of A Special Needs Plan.

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Lenny - June 22, 2018 Reply

Autism advocacy is the most difficult. You are up against so many egos. So many people trying to cover their behinds. A plethora of autism experts who aren’t sure, don’t know and always want to have meetings where they talk in circles and hive vague answers and have few solutions. It takes a very tenacious assertive advocate to go into the arena of autism advocacy. It’s not for everyone. Simply put, most autism advocates aren’t well liked by professionals who feel challenged and intimidated by their fierce advocacy on behalf of the autistic children and adults.

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