Long Term Planning for SYNGAP1 Patients: It’s never too soon

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Kali Worth is a Director of the SynGAP Research Fund.

Disclaimer: Any blogs on long term planning are not to be construed as legal, financial, or medical advice. These writings are parents sharing personal experiences as well as sharing resources they have found helpful in order to make the daunting tasks of long-term planning with a rare kiddo a bit more manageable. Laws vary state-by-state. We suggest that you take what you learn from the blogs and webinars and seek the advice of lawyers, financial planners and other professionals that have expertise in working with special needs families in your area.

You have searched, maybe for years, for answers to what is going on with your child. Your child (and as a result, your family) face significant daily challenges due to their condition. Once you receive the Syngap diagnosis, there is a steep learning curve. After all, the scientists are still learning about the gene and the phenotypes (symptoms) that result from the mutations that our children have. On top of learning about your child’s disease and advocating for him or her, those daily challenges don’t disappear with a diagnosis. In fact, they change and morph as our children miss more developmental milestones, struggle with uncontrolled epilepsy and face the numerous other medical, physical, intellectual, and behavioral challenges that come with having a SYNGAP1 variant. In fact, as a community, we have learned that Syngap symptoms do in fact continue to evolve as Syngap children become older.  Our children will become adults, indeed a few have been diagnosed in the past couple of years, including one who is 65.

So, the next piece in the jigsaw of having a rare kid?  Long-term planning. Where does one even start? There are a lot of tough questions to be asked and answered when it comes to planning for the longevity of our children’s lives: 

  • Do only those with significant wealth need to set up wills, trusts, and other legally binding documents related to the distribution of finances?
  • What are the options to compile funds securely for my Syngap child? 
  • What are the necessary steps to take to establish guardianship/conservatorship and how should I prepare?
  • How do I ensure my child is cared for in the way that I intend, in my absence? 
  • What are the living options for my dependent adult child if I die or I am no longer able to care for them? 

All of us face mortality as part of the human condition. Long term planning is something that is a common discussion amongst families. However, our situation of planning for a Syngap child that will likely need ongoing care around the clock presents a unique and more urgent set of circumstances.

Their needs will continue to be vastly different than our children that grow up and become independently functioning adults. Even if your child is three, five, or ten years old, there are important issues to consider. Will your child age out of a state Medicaid waiver program? Would your child lose any current or future benefits needed to maintain their quality of life if they inherit even a small gift from well-meaning grandparents or other family members? Do you have all the information regarding your complex child’s current plan of care, medications, care team contact information, likes and dislikes in one place and stated succinctly? Or, like most of us busy special needs parents, is it all kept in a combination of your brain, your phone, and many, possibly scattered post-it notes?

Along the way of our topical blogs and webinar series, we intend to begin to answer these big questions and dig deeper into the finer details of planning for your Syngap child throughout their lifespan while more deeply explaining the rationale and importance of such long-term planning efforts.

Since we also recognize that there are numerous important topics to cover, we have decided to turn this set of blog articles into a Long-Term Planning Series during which we will publish an article on one topic per month. Here is the list we have so far:

  • Creating a Special Needs Trust (SNT)
  • Drafting a Letter of Intent (LoI)
  • Setting up an ABLE account
  • Guardianship
  • Adult Living Arrangements (At Home, Group living: state-funded and private, co-housing Community)

Do you have a unique perspective or ideas to any one of the topics? Feel free to reach out to us – we are always looking for contributions from our community! We look forward to walking this journey together, to do best by our children, now and in the future. If you are a parent, we also have a private Syngap group to discuss these issues, you can join here.