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Parenting Impossible – The Special Needs Survival Podcast

Dec 1, 2021

As the year winds to an end, we begin to think about the new year and how prepared are we are for the future.  What planning will we need to do, what will we need to change, what worked well, what didn’t work well. For special needs families, the planning can sometimes be a little more challenging when it may include legal decision making regarding guardianship.  In this podcast episode, Annette goes over some of the different types of guardianships (or conservatorships) there are and other important legal documents to have, as well as the importance of making sure the supported person is at the center of the decision making process.

Annette begins by discussing some of the national and local developments that have taken place.  The National Guardianship Network has called for a reform of the guardianship system and has proposed a guardianship bill of rights.  They have proposed limiting guardianships where possible, maintaining person centered planning, right to counsel, supported decision making and better monitoring of guardianships to address abuse.  Congress is also considering funding a national court improvement program. The Massachusetts Guardianship Policy Institute has brought about many changes in the guardianship process since 2015 including supported decision making.

Annette then discusses the Brittney Spears case and how it brought so much national attention.  Brittney was allowed almost no freedoms and every part of her life was controlled though she was performing and making money.  This brought about the question of what does incapacitated look like?  How can she be working and earning money, yet still need guardianship?

Annette discusses one of the most important parts of this whole process – person centered planning.  When you are planning for your special needs individual, you need to make sure they are at the center of this planning.  You have to figure out first what decisions the individual can make and where they will need supports.  Then review the list of available supporters and who may be preferred.  Annette says, “remember that the supported person is at the center of the team and their voice is the most important one.” They need to have their own voice and be able to participate in their own future. Supported decision making is important – here are two online tools to help:  Supported Decision-Making and Honoring Choices Massachusetts.

Annette closes with the view that families will know what is best for them.  There is no one right answer to the legal decision making process.  The most important part is to remember Voice and Choice – the supported person should have his own say if he is able to and he should be at the center of all planning for his future supports.

For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us! 

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You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends! 

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.