Hi and welcome to Ask Missy Mondays where I respond to email questions from readers who have questions about behavior. Today’s question comes from a list serve on which I participate. The list serve is reserved to parents and guardians of individuals on the autism spectrum. The question actually came about because a reader posted a link to a great story about an adult with disabilities and the lack of resources available for adults once they age out of the school system. You can read the article here.
When people read the article, they became alarmed as they thought about “what would happen to their child with disabilities if/when something happened to them”, the parents/guardians. The sad reality is that our systems are not currently set up to properly care for our loved ones. I know this first hand, as my brother has been in the adult system for 13 years now.
- housing choices are limited
- 24-hour staffing is expensive
- community support staff are underpaid
- community support staff lack training
- funds do not exist within state budgets to care for all of those individuals who are going to enter the adult services system
So, what will happen to your loved one when you are gone? I will tell you what we have experienced first-hand: Abuse and Neglect. My brother experienced both of these and I am still around to advocate on his behalf. I never go more than 2 weeks without seeing him. Yet, he still suffered from abuse (broken bones) and neglect (malnutrition and dehydration) on more than one occasion. The details of those stories are for another day (and I book that I am working on). So what do I advise you to do? Start. Planning. NOW.
- Follow all the steps to make sure that you have appropriate guardianship/conservatorship as soon as your loved one turns 18.
- Make sure that you have a guardian lined up who will take over the duties when you are gone. It will be best to have someone who can start sharing some responsibility now so that the change will not be such a shock.
- Guardianship, at this time, does not transfer across states. We learned the hard way. If you are planning on relocating to another state, find out what steps are necessary and get it taken care of as soon as you have relocated.
- It is not normal for your loved one to live with you beyond age 18. Begin searching for appropriate housing options. It can take years to find the right place.
- A variety of housing options exist. Choose one that is right for you and your loved one.
- You will find it important for your loved one to live near you. Frequent and unplanned visitations are important
- Most states have long waiting lists for adults with disabilities. My brother waited for 9 years in Texas before receiving appropriate services. Get on the list today. If you do nothing else for your loved one, register them with the state today.
- Be honest about what your loved one needs. We all want to find the positives in our loved ones. However, your loved one will get more services based on his/her deficits. Do not sing his/her praises during the evaluation. Be honest about all the things and types of supports your loved one needs.
Adaptive and Self-Help Skills
- Begin teaching your child how to be as independent as possible.
- Make sure that the IEP focuses on functional skills. Remember, functional skills are those skills that if an individual cannot do the skill himself, someone else must do it for him.
- Refrain from doing things for your loved one. Instead, help them do things. Just last night my brother helped start the fire. He brought the wood in and he opened the glass doors for the fireplace. Every little step counts.
This is a scary and thought-provoking post. I assure you, it is better to think about it now while you are still healthy and able to plan and prepare. We would love to hear from readers who have already begun the planning process. Share your ideas with us!
If you have questions about behavior, email Missy at askmissy at appliedbehavioralstrategies dot com.