My twins turned 18 last year. For Justin, who has Asperger’s, that meant graduating from high school, getting a job, and starting college. And it also meant that I had to ask his permission to see medical records, school records, etc. That was quite a switch and left me feeling at a loss. What do you mean I don't get to make decisions for him any more??! But I help him where I can and try to steer him in the right direction, just as other parents with typical "adult children" do.
For Morgan, who has much more significant disabilities and is unable to care for himself, the changes were much bigger. I became his guardian, which required hiring a lawyer and going to court to get the official approval of the judge. If I hadn’t, on Morgan’s 18th birthday he would legally have become an adult and, just as happened with Justin, I would no longer have access to his medical records, couldn’t make medical decisions for him and couldn’t apply for any benefits on his behalf. Again, as with so many things, I was lucky enough to know I had to become his guardian before he turned 18 and to know about Autism Advocacy & Law Center, the attorneys I hired to help get this work done. They filed the necessary papers, we went to court and, after a short hearing, I was named Morgan’s guardian. Fortunately, I also decided to get some help from a professional as my co-guardian (Guardian & Conservator Services LLC), because the hard work had not even started.
As Morgan became a teenager, it became more and more difficult to take care of him. He has self-injurious behaviors that include hitting himself in the face – so hard that he has twice detached his retina. He has seizures on a regular basis. He is unable to speak or communicate very much non-verbally either. He is unable to take care of any of his daily living tasks without significant adult help. In other words, he needs an adult within three feet of him 24/7. When he turned 18, we made the decision to find a place for Morgan to live where he could get professional help 24 hours a day. Friends who had gone through a similar search told me it takes about a year to get everything set up!
I learned that there is a list of residences for people with disabilities, but there are very few open "beds". There's a list you can access daily to find out what has opened up, but you have to hurry because the beds get taken very quickly. Making a decision about whether the house is the right one, whether the staff is well-trained and services they provide will be the right ones for your child is nerve-wracking. To try to do so in a day before someone else takes the bed just adds to the stress exponentially.
And finding a place to live entails a WHOLE lot more than just locating the place. In Morgan’s case, it involved establishing a case with the county in which we live, getting a case manager assigned, having the case manager and numerous other professionals visit Morgan in person to assess his needs, applying for Medical Assistance (a Minnesota program that helps pay for medical expenses), creating support plans, talking on the phone to and/or emailing multiple agencies, and filling out forms and more forms and more forms. I received a Coordinated Services & Support Plan, a MnChoices Plan, a DD waiver, a Positive Support Transition plan, a pile of agreements relating to the house in which he was going to live, and a bunch of other things I’m sure I have conveniently chosen to forget.
This is where the professional co-guardian was worth every penny. They have been through this process many, many times and know how to navigate the system. During the first month of doing all of this work, the co-guardian exchanged more than 175 emails on Morgan’s behalf to get things set up. That’s in addition to in-person visits and a multitude of phone calls and that was on top of the 100 or so emails I exchanged myself (it took me 27 emails and 35 phone calls just to get a bed delivered for him – but that’s a story for another day). Once again, I was so very fortunate that I learned there was such a thing as a professional guardian and that I could afford to hire someone to help me with this work. Without them, I don’t know how I ever would have gotten through this maze and I know it would have taken me many more months than it did with their help.
The really great news is that we were able to find a home for Morgan in two months! He lives in a residential neighborhood in a house with three other adults who are also non-verbal. The initial adjustment was difficult (for all of us!), but after a couple of months, Morgan settled in and seems very happy there. The staff at the house (run by Premier Care Home Services) have been great with him. They took him to a real movie theater and one day when I went to visit him, he wasn't home because he was out apple picking! He went to a Halloween dance and a Valentine’s Day dance. He had never done any of those things before.
So this story has a happy ending. But the journey was a challenge for me -- and I had lots of help. I cannot imagine what it would have been like and how long it would have taken without that help. The systems are complicated and have a language all their own. On top of navigating all of those systems, parents (or other family members) are dealing with so many emotions. Making the decision to move your child (or your sibling or your parent) away from the home they have known and into the care of people you don't know is heart-wrenching. Getting access to the services they need shouldn't add to that stress.
How can we untangle this knot?