What to do if a group home is in your child’s future?

Ann Wilson @fxxxxxxxxxxxm writes, “I have been told to look at grp homes for my son, nobody wants to report on things like that.”

Let us start off by saying that whenever possible, we like to relate our situations and decisions as parents of special needs kids back to neurotypical parents because parenting is what we are all doing. So, with that in mind, when we talk about being faced with the decision for a group home, what are we really talking about – answer – the future.

Every parent worries about the day when his or her child will move away from home.

I’m sure you’re asking yourself, if it’s “the same” then why am I so afraid of it?” The reason is because it’s the “unknown.” Most of the decision foundations we draw from in our world as parents comes from our own lives and the lives of those close to us. We’re guessing not too many people in your lives have had to face this decision. Nor has society and pop culture provided any examples for it.

I know we haven’t been faced with that possibility yet. So we called up a good friend of ours, Rania Wood, BCBA, to get some suggestions. We also spent a few days at the Autism Society’s 43rd Annual Conference, so we asked a lot of experts there, too. If you’re faced with your child moving on to a group home, here’s some tips/suggestions to think about when you make your decision.

TIPS

1. Was there any consideration of special needs kids in the design of the facility?

The design or feng shui of the facility should connect with your kid. Never thought of it that way – but we all do when we’re buying a house. Is it laid out well? Does the space “feel” right or wrong? Most of us don’t know the technical terms – but we all just “know” when it’s not right – and autistic people will know ten times more. We met a lady named, Cathy, who formed a company called Purple Cherry Architects for kids/people with special needs. Like most of us, she found a way to apply her expertise as an architect to help her child. Seriously, most of us having issues sharing a bathroom – does the facility have a separate bath for your child or do they share with others? On her website Cathy states, “In Purposeful Architecture, we carefully evaluate relevant triggers and environmental issues for both individuals with disabilities and caregivers, including:

• Personal and Social Space
• Distraction inhibitors
• Durability of Materials
• Time Out Rooms
• Acoustics and Other Auditory Issues
• Colors, Patterns and Tactile Issues
• Outdoor Spaces, Including Security and Independence Issues
• Technology and Multimedia Applications

Check them out at www.purplecherry.com/

2. What types of activities are typically structured for the adults during the day?

Everyone needs to have fun. But we need to have fun we can handle, too. Is it all the same, regardless of personality, severity or disability? That wouldn’t make much sense – that would be like only having shuffleboard at a Senior Assisted Living Center. There has got to be a way to cut loose – but there also needs to be structure to the schedule of activities, and some of the activities themselves.

3. When an adult emits challenging behaviors what interventions are put in place?

You need to know that they have a plan in place and tailoring their techniques to your kid.

4. Is there an onsite BCBA that assists with interventions?

This could be a key question to ask. If the answer is no, you need to ask, how often is the BCBA on site? If they can’t give you a specific answer, like 4 days a week, that’s a red flag.

5. Financial planning

Do you have a trust or living will? Have you decided on someone that will take over these responsibilities, continue to evaluate the facility and move your child if necessary? This was something we hadn’t thought of until we happened upon the MET Life table at the autism conference in San Diego. We know it’s hard to think about but you need to make sure that you are prepared for this possibility.

6. When behaviors occur, what is the protocol, such as when are families informed?

Just because they aren’t living with you doesn’t mean you are seceding your responsibilities as a parent. Make it clear that you expect communication and how often. If you can’t come to an agreement that makes you comfortable this may not be the right place for your child.

7. Do all of the employees who interact with my child have some kind of crisis intervention training?

There are dozens of acronyms that we can throw at you PrOACT, CPI, NCI, MAB – too many for us to define here. These strategies are designed to allow employees to intervene during a behavior without harming your child. Honestly, we didn’t know what these were either. Ask them what training they have and when they spout off all these acronyms, write them all down then go down the list and ask them what each of them means. This is a great way to test their knowledge. If you ask the question and they look as confused as you did or start talking about CPR instead of CPI, that’s probably not a good sign.

8. What is the background of the employees that work here?

You want to know that the people who care for your child are here because they have an interest in this field. Our daughter Kennedy once had a school aide who was an out of work massage therapist who was just killing time until work picked back up. There’s nothing wrong with being an out of work massage therapist working in another industry, unless you have absolutely no training working with special needs kids. For the record, I don’t want her in charge of something like elevator maintence, either. We found out about her lack of training when we sent an expert to do a school evaluation. Our expert witnessed this girl nearly dislocate Kennedy’s shoulder trying to control her during a behavior. She intervened and then called us as quickly as she could. The therapist was immediately discharged from working with our child.

9. Does the individual have their own room or do they share a room? If they share a room how is their roommate determined?

With some kids this will be a non-issue and with others it could be the biggest point of negotiation. Just because two people are autistic doesn’t mean they automatically go together. They could have two conflicting stimming behaviors that set off challenging behaviors one or both of them. You just need to know that the facility is putting some thought behind these decisions. Ask the question and if the person doesn’t have an answer or says something like, “Oh, we try to match them up so everyone gets along.” Immediately ask, “Match them up how? What criteria is used and who evaluates it to make the decision?”

10. Will they have a private bathroom or will they have to share?

The bathroom is a difficult room to share for anyone. Kids with autism are no different. As with roommates, this could be a non-issue or a big deal. It’s better figure out which before it’s a problem.

11. What is the update schedule?

The last thing you want to hear is, “If you don’t hear from us, assume everything is okay.” This is your child and you not only have a right but a responsibility to stay informed about their care. Facilities should be giving you updates not just when things happen but on a regular and scheduled basis.

12. This one is for you – a facility is only as good as it’s current staff.

We’ve experienced this with therapy companies as well. You find someone who provides a great service and then the staff changes a little, and then a lot. The service begins to slide a little and then a lot. It’s up to you to periodically evaluate the facility to make sure everything is okay. Make sure you know the names of the people who care for and work with your kid. If you notice changes in staff, don’t be afraid to ask, “Hey what happened to Mary, George or Andre?” Sometimes people get promoted, move or change jobs it’s part of life. But if you notice more frequent changes it can often be a sign that something’s up.

Okay there it is. Thank you, Ann, for the question. Before we let you go, we just wanted to say one thing, if you have to make this choice it is not your fault. You have not failed as a parent or as a human being. We all have to face when our kids will leave home and go on their own – ours is just a little different. We hope these are some help to you.

Best,

Andy & Mel