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ForeverParent: A Case Study

My name is Mike (71), and my wife’s name is Amy (70). Our son, Mark, who will turn 34 next month, lives at home with us. Mark has intellectual disabilities, works part time at a supermarket in town, and takes part occasionally in social opportunities through a local recreational agency. Since Mark was in elementary school, my wife and I have attended all the special needs workshops offered through our district, and we have been diligent in planning for his future. Currently, we are both legal guardians of Mark. We have two other siblings, Carolyn (38) and Doug (36), who are both married and live out of state. Carolyn and her family live in CT and Doug and his family live in New York.

We have many friends in the special education community that we grew up with and we have listened to them talk about the research they have been doing for housing options for their son or daughter and have placed them in an independent living apartment or a group home in the past few years. Housing has been something we have not pursued, but we are feeling some pressure and anxiety as Mark gets older. Recently, an opportunity for Mark to live in an apartment with two other adults with special needs and we have been doing a significant amount of work to get this in place but are still hesitant to move forward. We never pictured Mark living anywhere other than with us in our home.

When we turned 70, we started having serious discussions and realized that we need to prepare for who is going to take care of Mark when we no longer can. Who will worry about Mark’s needs? Who will be an advocate for him? Who can possibility know everything we do about Mark? Our goal is to make sure that Carolyn and Doug can continue to live their lives with their families and not have to return to Massachusetts to take on the responsibilities for caring for Mark. It would not be fair to either of them.

Over the past five years, we have hired a few “respite” service providers for Mark through an agency, but they have not been consistent, and most are very transient and could not take care of Marks needs outside of taking him to social activities. We do not feel comfortable going away or trusting someone to be there while we are gone. Even if we trusted a person, how are we assured that if they decide they don’t want to work with Mark anymore, there would be a replacement? This would be a lot of work for a potential quick solution.

ForeverParent, a new organization, was offering a webinar that we both attended, and we realized that this is what we were looking for. They are providing a service that doesn’t exist for parents in a situation like ours. We contacted FP to discuss their services, and we took part in a FP LINK as the first step. As a family, we didn’t talk about the future. We needed to have a way to organize our thoughts, talk through this process, understand the resources that were available to us, and then evaluate our readiness to move to the next step. A Co-Director of FP who came to our home facilitated the LINK. The discussion started with the Director asking questions about our family dynamics. They wanted to know everything about what we did as a family, our beliefs, our values, what we did on a Saturday evening, what Mark liked to eat, and details about our extended family members. We discussed Mark’s educational and health history. The Co-Director spoke to Carolyn and Doug and met with Mark. Many topics brought up during the LINK were emotional as we talked about what it would be like in the future. We never had these discussions as a family and the Co-Director allowed for space to let these thoughts flow. We thought we agreed on all future decisions for Mark, but we realized we were not, and the LINK helped us put this into perspective. The Co-Director also asked us for past assessments of Mark and explained that if we decide to move forward with ForeverParent, it is essential that Mark has an appropriate match with a ForeverParent Professional.

The Co-Director explained it to us that a ForeverParent Professional (FPP) is a person who understands that taking on the responsibilities of a parent requires a firm commitment. An FPP is a person who is at a stage in their life where they can do this and can form a relationship with the parents. The Co-Director explained ForeverParent is recruiting and training individuals that can be an FPP. Many individuals have been in the special education field, but it is important to give them the knowledge about students with intellectual disabilities, multi-disabilities, autism, and mental health issues. We also trained them on how our adult agency systems works. 

They provided a LINK report to us, and it explained details about our readiness to take the next step in the Forever Parent services. The report gave us examples of a potential timeline for when we would begin each stage. It outlined many of the family dynamic conversations that we spoke about and put in writing some decisions we discussed. If someone else read this report, they would have a thorough understanding of our family dynamics, how we communicated, what we struggled with; it is unique to us.

We decided we needed to continue moving forward and purchased the first level of FP, which is called the ENGAGE level. The Co-Director matched us with a ForeverParent Professional. The FPP spends approximately 4hrs per week with us and Mark. This person is very knowledgeable about Mark’s needs and understands the adult agency system. We began with two goals. The FPP explained to us that this is the “Knowing stage,” and they want to understand and experience everything we do as a family. Secondly, the FPP provided us with a template which she called a “Task list.” We work on this task list which will capture every contact, service provider, medication, social contacts, tax documents, family members, Doctors, addresses, phone numbers, etc. It was overwhelming thinking about everything we did; all this important information was in our heads. We needed to organize this so anyone could access this task list/important information about Mark.

Recently we had discussions with the FPP about the next level of service which is called the PARTNER LEVEL. At this level, the FPP will take on some responsibilities on the task list. We were not ready to relinquish any tasks, but it made sense it did not pressure us that this would be a gradual process and to not move too quickly. The more prepared the FPP is at the ENGAGE level, the smoother the transition will be. When we decide to do this, the FPP becomes the “first call.” We trust the FPP will handle any situation the same way we do because they have the knowledge and are prepared. At the PARTNER level, the responsibilities that the FPP will take on will increase as we build trust. We will have the Peace of Mind and experiencing how this process works.

What we realized by starting the LINK and ENGAGE level is that these services are not for Mark. They are for us, the Parents. It provides us with a Peace of Mind, allowing us to live our lives and have some freedom to not have to worry. Someone will be there to worry for us.

The third level is called FOREVER. At this level, the FPP is taking on all the responsibilities that we did as parents. It was difficult even talking about this level, but the FPP will become our replacement. Of course, we never know when this will come. There is not a blueprint or timeline that says when you must enter each stage. Each level is a guideline that is discussed collaboratively with us.

Knowing we can have a ForeverParent to worry for us was the service we were looking for.


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