As many of you know, I've been deeply engaged in The UPLifting Guidebook Project to help guide parents and caregivers in the pursuit of independence for their loved ones with Down syndrome. The Project will culminate with the publication of The Independence Guidebook for Down Syndrome: Plans and Actions for Every Stage of Life in March 2023. Along the way, I've found five principles are essential for your family's journey:
Imagine! Yes, having a baby with Down syndrome can be a surprise and a jolt to your plans and expectations, but the world is filled with so many opportunities for our kids. They have access to therapy within weeks and can be included in mainstream school if they wish. Now, there are many amazing post-high school education programs, a growing list of work options, and independent home choices popping up around the country. Opportunities are all around us. What's even more important is that our loved ones with Down syndrome always have the ability to love and learn and be surrounded by support while they pursue the many possibilities available. So dream big! Don't let your child/adult settle - help them reach for their dreams.
Prepare for Lifelong Challenges. Did you know as recently as the mid-80s the average lifespan for people with Down syndrome was only 25? Now it is 60 and growing. This massive change is due to medical advances and awareness of the unique medical issues and approaches necessary to keep the community healthy, as well as greater involvement of community members to be engaged and active. With this more than doubling lifespan comes challenges. What will they do? How will they continue to grow? Where will they live given many are now outliving their parents? How much will lifelong expenses cost? What combination of job earnings and public benefits can help cover the costs? How do you ensure they get and maintain all the benefits due them? How do they remain healthy given many common health risks for people with Down syndrome can increase over a longer lifespan? All important questions your family should be asking now.
Start Early. Especially when it comes to independence, many believe this can wait until they approach 18 or the end of high school. When I first began my project, I had the same expectations. But what I've realized is we should start early... really early. In the first weeks/months of life, there are many items your family should be working on. Many states have significant benefits programs with extensive waiting lists (years and even decades). Get on those lists right away. It may seem like a burden at the time, but it will make a huge difference in everyone's life. Also, update your Will to ensure anything left to your loved one does not negatively impact their ability to get other benefits and medical coverage. You'll likely need to set up a Special Needs Trust and also advise grandparents etc how to incorporate your new child in any legacy gifts. And most importantly at an early stage, ensure everyone has a positive and ambitious mindset. This includes yourselves (parents and caregivers), grandparents, siblings, and certainly your loved one with Down syndrome in particular. Whether formalized or not, you will have an Independence Team made up of family and friends, teachers, and doctors, all of which can help advise and support your child's journey. Their role will include generating ideas and challenging the status quo, but it should always be in pursuit of the big dreams of your child. Naysayers need to be converted or sidelined from the Team.
Be Aware. From the earliest age and throughout your child's development, awareness is critical. There is so much to know and learn. The assumption what works for our other kids will work for our child with Down syndrome is just flawed. It certainly is not easy to know what benefits are available, how to understand post-high school education and housing options, or what the risks and pitfalls are to each. No one hands us a manual when they are born. That is exactly why The Independence Guidebook is being written, to help remove the mystery and provide options and the resources to make your plans happen. For instance, there are many state and federal assistance programs but you'll have to navigate the complex maze to find them, apply, and ensure you don't violate earnings and asset rules to maintain them. You certainly don't want to find your child is not eligible for some critical funding because of a decision you made (or didn't make) along the way, perhaps years earlier. Be aware!
Practice PCP First! Many of us have heard the phrase PCP: Person-centered planning. Many of us also aim to practice this as the cornerstone of lifelong planning for our child with Down syndrome. In essence, we are involving our child/adult with Down syndrome at every stage. Include them in discussions and decision-making about inclusion, school, work, social activities, and living arrangements. Take the time to explain these and seek their input. What they want and what may be best for them may not be what we expected or hoped for or in line with societal norms, and that is okay. Research indicates 87% of adults with Intellectual/Developmental Disabilities live at the family home, but only 22% of the individual with I/DD actually want to live at home! Generally, they crave the independence their siblings, friends, and TV role models experience every day, so this should come as no surprise. I find it amazing to invest the time to truly understand what our daughter is thinking and dreaming about. Her ideas and drive are amazing and inspiring.
The answers to these challenges and approaches can be overwhelming, but with proper planning and actions, we can help our child/adult grow up in a world of possibilities...
My website will be modified to provide more resources for your family's journey.
As I prepare to roll out The Independence Guidebook, I will be sharing some tips and strategies for you to be best prepared through future blogs.
I'll also be highlighting the amazing families I've met along the way and the stories of triumph they've shared in the Guidebook.
I'm planning an exciting Year of Engagement in 2023. I'll be joining many national Down syndrome conventions around the US and would love to share plans and actions at your local Down Syndrome Association meetings too. I hope to see you then!
JOIN THE INDEPENDENCE GUIDEBOOK PROJECT
The Independence Guidebook Project seeks to provide guidance for families with Down syndrome to navigate the often challenging waters toward establishing independence for your self-advocates.
The Project will culminate with a guidebook that will include sections on mindset for caregivers and loved ones, how to foster independence from childhood to adulthood, how to create continued growth through education and work, and finally how to secure the right living community for your loved one.
The guidebook includes inspirational stories from families around the world and advice from renowned experts as well. The guidebook will be published in March, 2023.
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