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ForeverParent in MGH Mindscapes Newsletter

This article referencing ForeverParent, recently appeared in the Summer 2022 issue of Mindscapes, the newsletter of the MGH Department of Psychiatry. click on the folling link to view the article: The Ripple Effects of Mental Illness

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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.

ForeverParent Webinars

We want to thank MSSN (Massachusetts Sibling Support Network) for hosting a sharing Space webinar with ForeverParent Co-Director Patric Barbieri on March 22nd. We also want to thank The Riverview School for inviting ForeverParent Co-Directors, Dafna-Krouk Gordon and Patric Barbieri to present at their 2022 Transition 2.0 Virtual Conference and the Pathways to Independence Webinar Series on March 26 and March 28 respectively.

Our ForeverParent Co-Directors are available for webinars to present our ForeverParent services and all topics related to Transition, Housing, and Social opportunities.

To set up a webinar or in-person seminar please contact Patric Barbieri at Barbieri@foreverparent.com

Forecasting “The Cycle” of Special Education and Independent Living

When my sister was transitioning from elementary to middle to high school, there was a family conflict that existed; my father wanted my sister to learn the curriculum that every student experiences and my mother was more interested in her learning functional academics and having social connections. For example, there were many years of IEP meetings where the team had to write goals and objectives for my sister to learn how to tell time via an analog clock or learn math skills by hand instead of using a calculator or being mainstreamed in an “academic” class.

Were my parents on the same page? No, far from it. It was hard to imagine what my sister would be doing when she was 18, 20, 25, or 30. I believe that my father thought, “if she is exposed to the regular curriculum, somehow (no data) this is going to benefit her.” Did we ever think that managing a CPAP machine would be a challenge, or she would go through ten different jobs before we found a good fit; or working together in a group would be the most important skill in her life? If they knew the forecast for her future, would the goals and objectives in the IEP have looked much different?

Independent living was never discussed before age twenty-two. Even if it was brought up, it was too far in the future to actually be seriously considered. We would have ever imagined my sister would be living in a group home and this would check every box they would have ever hoped for? This was another “dynamic;” my father had a difficult time letting go and letting her live in a group home and my mother couldn’t wait for her to have this opportunity. A data point we tend to ignore is that Big, Big, Big box which should be on the priority of every IEP! COMMUNITY and CONNECTION. This is the most important data. It won’t be the job or the money!

Parents have some tools, technology, and data to forecast the future. The problem is that they don’t know what the weather is like post 22 because they do not get exposed to it. If they did, we would prepare appropriately. Maybe we just want to ignore the weather. We may think, “we will just take care of them for the rest of our lives.”

The cycle I am referring to is the cycle from 3-22. To be in this cycle is safe and unrealistic to forecast the future. Many families are well out of that cycle now and are wondering, “Who will do what I have done for all these years?” For special education to change we need to somehow bring in the data of the future.

In my career working in special education, I have seen it over and over and over. I often thought, “how can I help families prepare? How can I inform what the weather is like? How do we engage in this discussion with sensitivity?”

The other piece of data we do have is that the cycle will eventually break. Not when we want it to but it will. How will it break? Well, we won’t be here forever and we don’t do well planning for this.

(MSSN Webinar) Family Dynamics: Who will be there to worry when I am not?

On March 22, 7:00pm-8:15pm, Patric Barbieri, Co-Director of ForeverParent will be the speaker for the MSSN Sharing Space Webinar.

Webinar Description:

Special needs planning is an emotional process — and we tend to put it off. Every family is unique; therefore, planning for who will be there next to take care of your child requires important conversations. Have you had discussions with family members? Have you considered who would be a future guardian if you are not here? Have you created an important contacts list of everything you do for your child so you will make it easier on others who may need to take on these responsibilities? We can move forward on this journey by listening and learning from others who have been there. In this workshop, Patric Barbieri, adult sibling of a person with a disability, Co-Director of ForeverParent, and retired Executive Director of LABBB Collaborative, will talk about his family experience and share what he has learned along the way, both personally and professionally.

To Register Click here: Family Dynamics: Who Will be there to Worry when I am not?

Alumni Questions

One of the events I really looked forward to during my time as Executive Director of LABBB Collaborative was our Alumni Dance. Students who graduated as far back as the ’80s attended. These graduates are in their 50’s now!

As I walked around to each table to speak with the graduates, I was prepared to ask three questions. I did this every year and they became stories that I stored in my head to tell every new parent why we were so committed to our mission statement. I would ask the graduates 1. “What social activities are you involved in?” 2. “Where are you working or going every day?” 3. “Where are you living?”

I heard many stories that were very positive and stories that were very sad as well. Most times, the sad stories were about how a graduate lost a parent. What stirred in my head afterward, was, “who is taking care of them? Are any siblings or extended family members involved?” Who has all the information that the parents or guardians had? This void has to be taken care of by someone, I am sure they have medical appts, SSI/SSDI, a Special needs trust, among many other needs, who is managing all this, was this all in place before the parents or guardians passed away?”

LABBB colleagues often reflected on the reunion dance for the next few days and we shared the stories we heard from the graduates and many of them heard the same stories as I did. We always expressed our concerns and wondered about their future care.

We worried about graduates who were older and still living at home. We understood the reasons behind this, but we also knew that graduates who live in group home settings have many of their needs taken care of, especially social activities, and being part of an extended family of peers is so important to their well-being.

Planning is emotional. So isn’t hearing stories like we heard at our alumni dances. We know losing a parent or guardian will always be the most difficult of all, we just wanted to know how their lives were being taken care of and if there was any planning for when this eventually happened.

What You Need To Know Part III

Writing it all down!

If your child is not living in a home, have you planned for this? Who is your child going to live with if something happens to you? Are you thinking, We have plenty of time to worry about this? These questions can be paralyzing for a family, as you cannot even begin to think about the items you will be responsible for if you haven’t started this discussion.

•  Group home meetings: Attend four times a year.

•  Doctors’ appointments: Who arranges this and gets all the details? We put together a Google calendar of all yearly appointments. Who will drive them there and get all the details?

•  Medications: Who will be responsible for making sure they get refilled every month?

•   Mass Health forms: This needs to be done every year.

•   Mass Health dental coverage: This plan has limited dentists. My sister and my parents went to the BU Dental Center. It would be impossible to bring her into Boston for dental appointments. I looked around for dentists, and most do not take Mass Health. We need a dentist who is local to her community. Many parents have their son or daughter on their insurance.

•  Allowance: My sister needs someone to take money out of her account and make out weekly envelopes for allowance every month. For special events, she needs additional monies dropped off at her house.

•   Phone management minutes: She needs minutes refilled every two months. There is always a problem with her phone. There is a plan that can give her free minutes, but the work to get it implemented is just not worth the time and aggravation.

•  Managing her weight: This is an issue that we need to watch constantly.

•  Going to house parties: We need to be involved, be engaged, and be a part of her community. We need to be present at her house gatherings and parties.

•  Special Needs Trust: This is an easy one, but you need to know how it works and who is responsible for it.

•  Karate: My sister has been taking karate for 20 years. Who is going to take her and arrange transportation?

•  Special Olympics: She competes in bocce and goes to practice every week when they are getting ready to complete. How does she get to practice and events?

•   Who is the payee for her bank account?: This person needs to monitor monies that come in from SSI and go toward her group home fees and her living expenses.

•   SSI payment reconciliation: Who will be responsible for doing this every year? Technically, the payee will need to report how the funds were spent.

•  Bank account: Who is going to check it every month so it does not go over $1,800 as per the SSI regulations?

•  Group home cleanup: Her group home closes for two weeks two times per year for cleanup. Who is she going to stay with during this time?

•   The Ride: This is a very good option for transportation, but you need to monitor them. We set this up for my sister to go to karate, but they were constantly showing up late and she was arriving 30 minutes late to the class, or sometimes they would drop her off an hour early! This did not work. We ended up driving her, and then we arranged transportation for her to and from karate with a parent from another group home. We were lucky this parent offered this.

•  Safety, safety, safety: This is the biggest fear. I didn’t worry about this until I took guardianship. I didn’t think much of it; my parents did. We constantly talk to my sister about what she needs to do. I still hear from parents whose son or daughter graduated from LABBB and what they are experiencing, and safety is always a concern. There is too much to discuss in this article, but the same elements, such as bullying and harassment, which we discuss in school are going to occur, and I have had to intervene on a few issues already that have happened over social media.

I have developed a spreadsheet that I have been building over the past year of every doctor, case worker, and anyone who is involved with my sister’s life. It is a good idea to begin planning now by putting it down on paper. Write down anything that you can think of that someone would need to know. It will evolve year after year, but this information will be paramount. Every month, I learn something new, and I add it to the sheet. If she needs a release form for the Special Olympics, no more guessing; I know which doctor the form needs to go to and where to bring it. I need to sign her up for karate four times a year, and now I know where to send the check and form to. She just asked me to sign her up for a flag football team. Where do I sign her up? Who is going to drive her and pick her up?

Finally, my sister is part of a community that knows her. This community has taken years to build. She lives with peers who all attended LABBB. These families were very engaged and proactive when they were in LABBB, and I knew them well. All the group home members are seen around town, and this has made a significant difference in their safety and support. In difficult times, this group home is going to be the most important part of their lives. I can’t emphasize this enough. At the time of this writing, one of the parents in the house just emailed me and said that she arranged transportation and set up overnight accommodations for her housemates who are attending Special Olympics this weekend. What a relief this was! I did not know how we were going to arrange this. Working with a network of engaged parents is essential.

Use this information to go through a simulated, real-life situation if you need to get it in place in a few months. Are you prepared? Are your son’s or daughter’s siblings prepared?

I am open to talking with anyone at any time if you are interested in starting this conversation with your family. I can meet with you to help you facilitate this discussion and offer my experience and knowledge. It changes the lives of the caretakers, siblings, and guardians when these events happen. Start planning now. Do not wait.

If you know people who can benefit from the information in this article, please share it with them.

What You Need to Know Part II

When Do You Get Siblings, Caretakers Involved?

The siblings of your special needs son or daughter may be too young to get involved at this time, but this will get you thinking about the future. Sibling groups may be a good way to get started. It doesn’t have to be a sibling; it could be an aunt, uncle, or another person whom you see taking on this role in the future.

Unfortunately, my parents passed away within a short period of time before they shared these responsibilities; we did not have a transition. If we had started this planning and had known where all the information was kept, it would have been significantly less stressful. My parents were organized, but the information was all in their heads. We are still digging to find important information that we will need in the future, from medical records to paperwork (the paperwork is never-ending), medications, caseworkers, and many more items I can’t even remember but am still trying to gather.

How were we supposed to know that the Mass Health application was overdue? We didn’t know you needed to apply for this each year! Who is taking care of this? This is just one example of something that needed to be done that we did not know about. This created significant stress for my brother and sister. We were all trying very hard, but even with three of us, and our spouses, it was overwhelming. We worked very closely together, but it was frustrating because we were also dealing with our own families, jobs, and responsibilities; we were forgetting to follow up on items; and we didn’t know who was doing what. Everything became a last-minute rush to get it done because we were just finding out about it.

We needed to find my sister’s contacts, including doctors and case workers, and her medications, among many other things. We were running all over the place trying to piece it all together. When we went to the pharmacist, they could not refill her medication. Why? They said that we needed to call her doctor to get it refilled. Which doctor? Once we got in touch with the doctor, they required us to set up an appointment before they would refill it. Her doctors were located anywhere from Lexington to Boston. My parents were retired and had plenty of time to drive into Boston for medical appointments.

My sister had a different doctor for each medication she was taking; therefore, we were trying to find names and numbers for six doctors: 1. Primary physician, 2. CPAP machine, 3. podiatrist, 4. dermatologist, 5. diet manager, and 6. dentist. At the time, there was an ongoing issue with all of these specialists and we needed to bring her to each of them immediately. We didn’t have any information about where they were all located or any baseline data; it was all in my mom’s head.

Shortly before my mom passing away, I called my sister’s counselor to check in and let her know about our situation. The counselor stated that she was moving and was ending her services at the end of the month. My sister’s DDS case worker was excellent, and he immediately contacted me to offer support, but he said he was retiring in one month. My sister’s SSI checks stopped being deposited, and we needed to go through the process of implementing a new payee for her account before they would issue the checks. I did not even know what a payee was. No one told us that when the current payee—who, in this case, was my mom—passed away, the SSI checks stop immediately. How can all this happen at the same time?

This was the beginning of a list of problems as siblings and guardians that we would need to figure out on our own. These were the problems we needed to solve both in the short term and the long term. For parents expecting their siblings to take over responsibilities, it is much more complicated than just assuming that they can do it on their own. Even if you have all the information in one place, just the paperwork, doctors’ appointments, and coordinating transportation can be overwhelming.

What You Need to Know!  

By: Patric Barbieri

(This article was originally published in 2016, there will be three parts to this post over the next month)

Part I

It was always understood by our family that I would be my sister’s guardian when something happened to my parents. It was always in the back of my mind—a mere conceptual thought—but we never had a formal discussion about it. “Yes, of course, I will be the guardian,” I would say to my parents, but I figured this would be much further into the future. What we didn’t expect was that both my parents would pass away within five months of each other this past year. My sister has Down syndrome and turned 40 years old over the summer. Our lives were about to change significantly. 

If you want to learn about the reality of special needs planning, this article is for you. There will be no fluff—just the facts, the brutally honest truth of what I learned, and the mistakes our family made. Let me start by saying that developing a “special needs trust” is not the planning I am speaking of. Interestingly, this is the first thing I was curious about because I heard of the importance of developing one. Well, forget that. A financial trust is but a small item in a long list of planning considerations and decisions that need to be made. It is necessary, but you should certainly not think that it is a priority in any way, shape, or form. The real planning is starting the discussion with family members who will be taking care of your son or daughter in the future, what role the siblings will play, what they will need to know, and what decisions they will need to make. 

This is a personal story that illustrates the reality of special needs planning. When will you need to confront these facts? It could be in 10, 20, or 40 years, but eventually, the time will come, and someone will need to be responsible for the care of your son or daughter when you cannot do it any longer. Siblings play the most significant part in this planning, and it is essential that they have the knowledge, information, and understanding regarding what this will entail. To parents and siblings, I implore you to start planning now. We made the mistake as a family of not doing this. Siblings, your lives will change when you take over the responsibilities. My hope is that by the time you finish reading this article, your family will be motivated to start a discussion and start planning as if it were a 50-year plan. Believe me, it will be a lot easier in the future if you do this now. 

In 1978, I was 14 years old and was attending a sibling support group at the Shriver Center in Waltham. It was the first sibling group facilitated by the Shriver Center. If you would like to read the Shriver Spotlight Magazine “Siblings” article they did with me, click here: https://patricbarbieri.files.wordpress.com/2012/10/shriver-spotlight.pdf. My mother wanted my brother, sister, and me to understand what we were going to be experiencing with a sister who has special needs. She wanted us to connect with other peers who had siblings with special needs. This was a good start. 

About nine months ago, and at 52 years old, I started the process of acquiring guardianship over my sister, who just turned 40. I was very involved in her life, but I never realized the amount of work my parents were doing to take care of her! It was simply amazing. As parents and guardians, you know this all too well, and you are still trying to figure it out. But who is going to take all this on after you? You will not be here forever, and you never know what can happen, so planning needs to happen sooner rather than later. Think about all the hours, days, and years you have been working on the care of your child with special needs. Not many people can understand how much work this involves unless they have been through it. 

At my mother’s funeral services, William, my sister’s housemate, approached me to offer his condolences. I thanked William for coming and he responded, “Of course, we are a family, and we support one another!” When you hear something like that, you know my sister is in the right place. Her group home is her sanctuary, her support, and the place where she wanted to be during this difficult time. We asked her, “Why don’t you come live with us for a while?” and she said, “Absolutely not. This is my home; this is where I want to be.” We are fortunate in that we have family members who all help out with the care of my sister. She has been living in a group home for the past seven years, and although this is not an article about housing, I don’t know how we would have survived if my sister had been living with my parents at the time they passed away. 

My sister has a part-time job at T.J. Maxx, attends her community day support center on the days that she does not work, and has a wonderful social life. We have an ideal situation. You would think everything is taken care of, so what do we have to worry about? 

My parents didn’t want to burden us with everything that was involved in the care of my sister, and perhaps, for them, it was just something they did for so many years that it became routine and they were planning on sharing it at some point. As a family, the mistake we made was not starting the conversation sooner. The planning and sharing of the details of my sister’s life should have been a gradual process, and when the time came, we would have had all the knowledge of what was going on in her life. But we just don’t think about this because we always believe we have plenty of time in which to do it.