In my practice of law, I work with clients who have family members and loved ones with developmental disabilities. Naturally they are concerned about what will happen to their loved one when they are no longer able to care for them. Of course, the first step is to create a Special Needs Trust. A Special Needs Trust allows a parent, grandparent or guardian to provide funds for a disabled child (beneficiary) without disrupting the child’s eligibility for government aid.
At the America Academy of Estate Planning Attorneys’ Spring Summit in Philadelphia, a recent court case was presented that highlighted the need for advocacy for the developmentally disabled. In the Matter of JP Morgan Chase Bank, N.A., the trustees of a Special Needs Trust were not making distributions from the trust for the benefit of the disabled person. They were merely investing and managing the funds. Only after a certified care manager was hired to attend to the beneficiary’s needs, did the beneficiary’s quality of life improve. For this reason, it is important to have a personal advocate in place for the disabled person.
If there is no relative that you feel is capable of representing their needs and desires, as well as your wishes, then you must look outside the family. In Maryland we are fortunate to have an organization set up to do just that. By Their Side, Inc. is a private non-profit organization which provides lifelong advocacy for Marylanders with developmental disabilities. When you join By Their Side, they will get to know both you and your family member well. They know how to navigate the complex system on your behalf and will work closely with estate and trust professionals. Together with you, they work for the health, safety, and happiness of your loved one. When you are no longer able to do so, they are there to carry on your wishes.
Here is what By Their Side can do for your loved one with special needs:
- Make regular visits to your family member to assess his/her well being and the quality of care provided
- Attend Individual Planning meetings with and on the behalf of the disabled person
- Review reports noting any areas of possible concern for follow up
- Maintain phone contact with service providers to monitor care
- Advocate for changes that can improve one’s quality of life
- Provide update reports to siblings and/or Trustees, noting appropriate expenditures and identified needs with possible solutions.
As a parent, no one knows your son or daughter like you do. By Their Side can’t replace you or the special bond you share. However, you can rest assured that in your absence, they will be there.
For more information you can e-mail: firstname.lastname@example.org or call 443-279-1234.
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