Individuals with serious intellectual and developmental disabilities often require support from adult service programs when they turn 22. This process can be challenging and filled with anxiety for their loved ones. Every parent wants the best for their child as they become adults, but they may not know where to start.
To help folks prepare for this journey, we spoke to several parents with adult children at The Guild about their experience. Our first conversation is with Peg Doherty. Her son Christian has complex medical needs and requires a sophisticated and intensive level of care. He has been at The Guild for more than six years.
The following are excerpts from our interview.
Q. Thinking back to the time leading up to Christian turning 22, what was your planning process like and what were the key factors you were considering?
Peg: First, we wanted him to be in a place where we were confident that his basic needs would be taken care of. Secondly, we wanted a place that could help him build a sense of autonomy and a realistic chance of growing and having a life of his own. We want Christian to live a long life and realize that means he will outlive us. We wanted a place where we knew he could have a forever home.
Q. What was that like as you began to navigate the transition process?
Peg: It was a real challenge. Christian was at the Perkins School for the Blind from age 8 to 22. Given the severity of his disabilities, we had real concerns about finding an adult program that would meet his needs and our expectations. Anyone who truly understands the realities of intellectual and developmental disabilities knows that the variation of supports needed is significant. For this reason, organizations serving adults are unique in their expertise and services provided.
We visited dozens of programs and asked a lot of questions before deciding. Unfortunately, even after this thorough review, the initial program we chose was not a good fit for Christian. That does not mean they were a bad program; they just did not provide what Christian needed, so we began searching again. That is when we found The Guild. Given how the first placement went, we were quite cautious. Fortunately, the staff at The Guild were very honest. They didn’t just say that they could support Christian in every way we might want; they also told us what they could not provide or promise us. Additionally, they talked about and showed us the systems, staffing, trainings, etc., that they had in place to prove that they understood Christian’s needs and would be able to provide what they did promise.
Q. Where there any challenges when Christian transitioned to The Guild?
Peg: Yes, of course. Things were not perfect, and they never will be. You have to realize that when Christian was born and survived longer than any of the doctors initially told us he would; I promised him like every parent of a child born with a disability does, that I would walk through fire to get him what he needed. Then I spent the next 22 years of his life doing just that daily. I had many, many conversations with The Guild staff about things they could and should be doing differently or better. Sometimes we agreed, and sometimes we did not. I have learned to focus on what is most important and not every small detail. I think this is something every parent goes through when it’s finally time to let go a little bit. I know The Guild and the staff care deeply about Christian and work extremely hard to support him. I also know that they are committed to hearing feedback, learning, and doing better.
Q. What are some of the things The Guild did well?
Peg: Family is truly important at The Guild. When families are appreciated and involved, it is the best thing for everyone involved. They have an appreciation for parents and families. They listen.
They also have great infrastructure and systems. You see it through how the staff behave and follow best practice policies and procedures. They create thoughtful, individualized plans for each resident. They are constantly training, supervising, and evaluating their services.
Q. Why do you believe The Guild is the best place for your child?
Peg: Because of his level of impairment, only a few places can provide him with the intense level of care that he needs to function and simply survive. The Guild is one of those few places. They have an amazing staff with various levels of expertise, but most importantly, they all are extremely caring about each individual. They also have great systems and trainings that ensure that no matter which staff are at the house, or in the community, with Christian and his housemates, they will receive incredible care. That level of support and care allows Christian to not only survive but to thrive. Christian has the quality of life that, as a parent, I want for him. We love him, and he loves us, but he is an adult with his own life. The Guild is a critical reason for that.
To learn more about The Guild’s Adult Services visit https://www.guildhumanservices.org/adult-services