Stories like these break my heart. The system failed these people. They had loved ones, trusted people, helpful people right there trying their damnedest and giving it their all but kept hitting one road block after the next. I’m really glad and relieved that the HR 2646 Bill finally passed and allows for us to plan ahead assign our trusted people to be the ones to care for us in times of need.
The thing we need to keep in mind, this bill doesn’t govern what happens to our children when we become critically ill. So it’s really important that when we know that we’re sick and have the potential to become that ill, we have to plan ahead for the sake of our children.
So hopefully between this new bill in place and by setting up a crisis plan for yourself and your family, stories like this won’t happen to the extent they did. That’s the goal here.
I learned real quick when my son was diagnosed with Autism that the state loves to see a crisis plan in place. It was frustrating at the time because their focus was on the child and he was never, and still isn’t, a crisis. But they still wanted to see you have that plan, just in case.
When my migraines kicked in and became a crisis they were happy (the in-home therapy staff) that I developed a plan with my family to address that crisis to make sure my kids were taken care of during those times.
If you have children with medical needs then you’ll want to make sure your trusted person also meets with your children’s care providers and you sign all the release forms and keep them up to date too. This way if you become seriously ill, they are going to need to be able to get your kids’ medications, speak to their care providers, and even be able to take them to their care providers when needed. Whether they have medical needs or not, their schools will need to meet with your trusted person as well. Most schools have an emergency contact list and a list of trusted people that can be allowed to pick up a student. Make sure your trusted person is on these lists. It probably wouldn’t hurt to invite your trusted person to IEP meetings if you have them so the staff gets familiar with and used to talking to the trusted person. It’s also the easiest way to keep everyone up to date.
It’s a good idea to have your trusted person meet with all your care providers and sign all the release forms you are comfortable with (like I would skip the therapy notes ones myself, but not the rest). This way if you are ill enough to need help, but not enough to be hospitalized, they can help you with appointments and getting medications.
One very powerful option to run with is to set up a springing, durable power of attorney assigned to the person of our choosing for the times we fall seriously ill complete with instructions of what we want managed and handled.Yes, a lawyer is needed to walk you through all that and make sure you get it all worded right so that it ONLY comes into effect when you are seriously ill and is inactive while you are not. Make sure that whomever it is you choose for this is someone that will respect you and won’t be someone that takes advantage of this legal power. Don’t be afraid to choose different people to handle different areas – like one person to handle your medical, another to handle your children, another to handle the money, etc. if you are lucky enough to have that many loved ones in your life willing to help out. It will cost money but I believe it will be worth it because it ensures your wishes are upheld.
Whether it’s just a crisis plan or a durable power of attorney, make sure all parties involved get a written copy. This way everyone knows what’s supposed to happen when you become seriously ill.