This issue of the Voice was written by Special Needs Alliance member Lois M. Zerrer. Lois has practiced Elder and Special Needs Law in Springfield, Missouri for over thirteen years and speaks frequently on these topics for Special Needs professionals and families.
To say that parents of children with disabilities have learned to multi-task is an understatement. Providing for the many personal and care needs of your child on a daily basis can be overwhelming, but advocating for your child is a true act of love that makes the effort well worthwhile.
Caring for your child with special needs often involves more than the daily activities of providing food and shelter. Sometimes you must aggressively advocate with legislators and others in positions of authority to do the right thing for your child and others, an activity that may take you out of your comfort zone. If you are able to be an advocate your advocacy could make a real difference statewide or nationally for your loved one and others.
A personal visit to the U.S. Congress or your state legislature can be effective and enlightening on many levels. You will find that it is invigorating to be in a place where decisions are made that affect thousands or even millions of people. You will be talking with officials and staff who can make a significant difference in the lives of your loved ones. To get the most from such visits, you must be prepared and use the right approach. This article highlights several tips and ideas for being an effective advocate with elected local, state or national representatives.
Tips for Effective Advocates
Several legislators and advocates were contacted for the tips and suggestions that follow. These ideas and tips will help you to be an effective advocate when you contact an elected official.
Incidentally, one bill that recently passed in the U.S. Senate and is now pending in the House of Representatives is of particular interest to members of the Special Needs Alliance and many readers of The Voice. The Special Needs Fairness Act would allow individuals with disabilities who have mental capacity to establish their own “first-party” special needs trust. (See previous issues of The Voice for details on these trusts.) Under current law, such a trust must be established by the beneficiary’s parent, grandparent, legal guardian or a court, but it cannot be established by a competent adult on his or her own behalf.
There are two other bills that recently passed in Congress with critical support from parents and advocacy groups. The ABLE Act allows individuals with disabilities and their family members to set aside funds for disability-related expenses, comparable to 529 Plans for education expenses. The Disabled Military Child Protection Act allows members of the military with a Survivor Benefit Plan to transfer assets to a first-party special needs trust for the benefit of their child, thereby allowing the child to continue receiving important means-tested benefits, such as Medicaid.
Personal advocacy with elected officials by parents and other family members can effectuate enormous change. The disability community may not have tremendous financial resources, but persistence and passion can transform the law at the local, state and national levels.
About this Newsletter: We hope you find this newsletter useful and informative, but it is not the same as legal counsel. A free newsletter is ultimately worth everything it costs you; you rely on it at your own risk. Good legal advice includes a review of all of the facts of your situation, including many that may at first blush seem to you not to matter. The plan it generates is sensitive to your goals and wishes while taking into account a whole panoply of laws, rules and practices, many not published. That is what The Special Needs Alliance is all about. Contact information for a member in your state may be obtained by visiting the Special Needs Alliance online.
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