Siblings are important to the welfare of the individuals we serve. For more resources, click on this link: www.siblingsupport.org
Sibling Resources ~ Future Planning
David and his older sister, Emily, were raised as a close knit family by their parents. When their father passed away, David’s care became their mother’s responsibility. But, when their mother passed away unexpectedly, one afternoon shortly before the holidays of 2019, David and Emily’s loss was compounded by the realization that there were no plans set in place for David’s future care.
David went to live temporarily with Emily until arrangements could be made for his transition into residential services provided by Cooperative for Human Services. In the beginning, it was extremely difficult for David to adjust to all of the life changes.
Weeks later in February 2020, the pandemic struck and Massachusetts went into a lockdown. Emily was not permitted to physically visit David, nor could he attend his day program, making the situation all the more challenging for them. In Emily’s estimation, the first year was horrific.
Eventually, everyone adjusted to the Covid-19 protocols, David’s day program eventually reopened and with a structured routine in place that he understood, David became more settled and happier in his new life.
David likes his housemates and has a close friendship with to one in particular. As a natural part of the grieving process, David expresses sadness for the loss of his parents with Emily and both find comfort in each other’s company. Looking ahead, Emily’s only concern is that David is happy and healthy. In between visits, they stay connected using technology such as Facetime each Sunday and David spends time with Emily at her home at least one weekend a month.
Emily and David enjoy playing mini golfing or bowling, depending upon the season or weather. But their favorite activity is by far, swimming. Both learned to swim early in life and during the summer of 2020 when facilities were closed, they found a local lake with a designated swimming area to satisfy their passion for the water. David stood in the water for three hours during his first trip to the lake.
What advice would Emily offer to younger siblings who may not be thinking about their future role as advocate for their brother or sister with special needs? “I wish my parents had engaged in more open conversations about what would happen when they could no longer care for David.” Emily says it is extremely important that parents have plans in place such as a will and estate plan and it is critical to share those plans with the responsible sibling. She recognizes that there can be anxiety for parents as they contemplate the future. For some, it can be overwhelming and paralyzing, resulting in no plan of care.
Emily advises siblings to learn more about estate planners, consider setting up a special needs trust if possible, and learn from other siblings’ experiences. Parents, family members and professionals working together to minimize the anxiety of change and navigate the transition process will help ensure the long-term wellbeing of everyone involved.
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Rewards and Challenges of Sibling Support
Cynthia R. Haddad shares an insightful perspective on how she and her extended family provide support to her special needs sibling. As a wealth advisor, Cindy is a committed professional partner to families planning lifelong care for their special needs family member. As a sister, Cindy is a dedicated sibling and effective advocate for her brother. Cindy is currently a member of the Board of Directors for the Massachusetts Sibling Support Network (MSSN). She has held leadership positions in a variety of public policy advisory organizations, served as Board Member of the Arc of Massachusetts, and the Central-Middlesex Area Advisory Board for Massachusetts Department of Developmental Services. Learn more about Cynthia at her website, www.specialneedsplanning.com.
Interview- Part 1 of 3– Finding Support Networks
Perhaps we could start by talking about how your parents approached the subject of being a sibling and taking care of your brother in the future. Was there a conversation like that?
“No, somethings you didn’t talk about, not directly like that. I was the youngest of five, and I was the only girl. So we just always grew up knowing that my brother was the special one; he needed a little extra help and an extra hand and a little extra support. But my family made him to be as independent as possible and they do a great job. He was one of the first to graduate from the Special Education program at Minuteman Technical High School, Lexington, under Massachusetts public law Chapter 766. He was also one of the first members of a Boy Scout Troop for special needs and one of the first participants to represent Massachusetts in the International Special Olympics Games.”
“One of my other brothers was in that group too, so the troop had a combination of abilities. My mom really helped to create a wonderful network of other parents. We had dances and fund raisers. We’d be at Stop & Shop asking to please donate to the retarded. At that time we did use the “R” word. But we did not use the “R” word in our house. We just talked about Ron being special and he’s still to this day, special. It’s all about Ron… all about Ron.”
When you were growing up, how did you feel about the situation? Some siblings might feel resentful because there is someone else getting attention.
“We weren’t resentful; we were just all one big family. You just had to all help each other; all cared for each other. We went to Special Olympics and supported Ron, who was the first to go to International Special Olympics. And the people in Arlington where we grew up… we had some pioneering parents in our town. Arlington had the first workshop, the Kelleher Center, and one of the first group homes was in Arlington. Because these pioneering parents were of a generation where you didn’t talk about the situation, you just did what needed to be done.”
“And again, I tell this story quite a bit, when I go and speak. I’m on the board of the Massachusetts Sibling Support Network. I talk about future planning as a family affair. We talk about family statistics, and current research about sibling issues. So I am comfortable talking about it. But when I was younger, I was not comfortable talking about it. I knew Ron was just Ron. Any kid with special needs just needed special attention. We donated our clothes to the Fernald School and we just thanked God that Ron was not there.” And so we did a whole bunch of stuff because Ron and his peers needed some extra help, so it was just a given.”
Are you and your siblings all equally involved in Ron’s life or do some live farther away?
“We are all around. We all have different roles. We all love him differently. But it wasn’t until my mid-twenties when I fully stepped up. When I was in middle school, this was the first time kids with special needs were integrated into the classroom. I remember very well in seventh grade walking down the hall with my friends and some of Ronnie’s friends, who were younger than him, came down the hall waving to me with their funny faces and different looks and different voices and waved, “There is Ronnie’s sister!” We knew them from dances, fundraising and activities like Special Olympics that we all participated in. I said hello to everybody and when I turned around, my friends all ran away. They were afraid of these odd types. But to me they were just Ron’s friends. We never spoke about what their special needs were exactly; we just knew he and his friends were special.”
‘In my mid-twenties I attended my first sibling support group through the Boston Greater ARC (now part of Northeast ARC). For twelve weeks we went and learned about where Ron and his friends could live, work, and that you could create trusts where you could leave money to them without jeopardizing government benefits. We learned about genetic testing. We learned so much in that group and that is when I really felt the connection with other brothers and sisters for the first time.”
How did you navigate and find helpful information? It seems through the Greater Boston ARC.
“Yes, through the ARC of Greater Boston, which is now Greater Boston ARC.”
Was networking and talking to other siblings in a similar situation important at the time or perhaps that came later?
“Well, in my mid-twenties it was just incredible, we sat around the table, we shared stories with the one common thread that our parents spoiled the heck out of our brothers and sisters. And, if we were going to be the next generation to parent, when they no longer could (because that is what we just assumed), we’d have to be instant parents, and we needed and wanted to know what we could do differently and better. It was very empowering, very enlightening to talk to other sibs.”
Interview- Part 2 of 3– Navigating the Transition
How is your role different from that of your parents in terms of relating to Ron now that you have a lead role in parenting?
“My parents are still alive, but they are tired. They don’t do as much as they used to, but they are still there for him. They there as best as they can. What partnering with CHS allows me to do is live my life and not be Ron’s sole caregiver. It’s very important. So when you talk about siblings, we are not of the Sandwich Generation. We are of the Super Sandwich Generation! We are caring up, we are caring down, and across. We have aging parents, we have children of our own – many of us do, and we have an adult sibling whose needs are changing. So you talk about aging in place for your parents, talk about aging in place for your brother and talk about helping your kids. So we are the Super Sandwich Generation. It’s an awful lot to juggle. Someone that I work with said to me, “Oh my gosh, it’s almost like you have another kid. It’s almost like you have five kids – your parents, you’ve got your brother and your own kids. And, God bless my husband.”
“I am fortunate enough to have my other brothers, too. We each try to do things for Ron at different times. I have worked with a professional life-coach and recognize that you have to reach out and also protect yourself. Self-care is so important.”
Let’s talk about self-care because it’s an important topic for everyone. What are some things you do for self-care?
“One is boundaries; we have to be okay with boundaries. Somebody told me a long time ago to tend to your own garden first, before you can tend to anybody else’s garden. And I think I set boundaries and take care of myself and carve out space for me, which is really hard to do – but, you have to – I feel better and I can be more patient and a better sibling. But I work professionally so it’s always about finding a balance.”
What were some of Ron’s key transitions that you were involved in or aware of, or perhaps facilitated?
“One was his moving out of the family home. I think the biggest part was the transition from moving from the family home to where he is today. And you know, being in the right place at the right time, I was on the Citizens Advisory Board for DDS at the time and I was part of the ARC Mass Movement for Family-to-Family, families that were on the waiting list for services and support. This is when I learned that Ron would be eligible for funding from the Boule settlement from DDS. So that’s how we were identified to receive some services for Ron.”
“Ron had wanted to move out for a very long time and it was getting very ugly or challenging, yeah challenging, with him being at home with my parents. He wanted to be like everybody else. I was the one that really advocated for him to move out and it just seemed like the right time. Because I had been talking about it for years, and I had been advocating for him to live on his own, because I didn’t want to look up one day and have him living with me. I wanted to – I didn’t know that I could – but I wanted to be able to live my own life with Ron part of it, but not the focal point. So I needed to know that yes, it is ok that it’s about me, too. And, I could love him from afar just as much as I could love him attached to my hip. I didn’t know I had options until I spoke with other siblings and got involved with the disability community.”
How did you navigate through the system and find services? Are there any tips that you would give other siblings who are attempting to go through this process now?
“Well, it was tough. It was learning a whole new language. It was learning a whole new world and I took baby steps. I served on the Board of what was then called the Arlington Association for Retarded Children, now known as the Association for Special Needs Activities and Programs or A– SNAP. I have dedicated my whole profession, my whole practice, my whole career, really, to helping other families like my own. So because of that, I made it a personal mission to educate myself and educate other folks, as well as other families, in planning for the future. I wrote a book, The Special Needs Planning Guide: How To Prepare For Every Stage of Your Child’s Life along with John Nadworny. I also wrote an e-book called, “Sib Tips: A Vocabulary for Brothers and Sisters, which is on my website. It explains basics about what is DDS, SSI, SSDI, ISP? I mean, brothers and sisters don’t know any of this stuff. They may have heard of it. And then, all of a sudden the parents can’t take care and you have to step up and you have never been to an ISP meeting.”
“We encourage parents to bring adult siblings to the ISP meeting, fill out what we call a letter of intent, which is all of the information about the adult child. What are their likes, what are their preferences, what are their habits, what’s their hygiene, who are the people in their life? In the letter of intent, even share the vision you have for your son or daughter. So the parents have passed this down to the siblings. We need to do that for the next future caregivers, which might be our children, our nieces and nephews, or if there is no family, might be professionals, might be an agency. Fill out, let them know who and what is important to your brother at Christmas or their birthday or holidays that are special and important to the family.”
It’s similar to “My Story,” a tool we use at CHS to understand the history, preferences, interests and needs of the people we serve.
“Right, it’s a person-centered plan like “My Story”. Somebody needs to know the history to be able to carry it on. What are the family values? Who knows that stuff? It’s usually the brothers and sisters, because we share the longest relationship on Earth.”
What do you do when you don’t necessarily agree with an aspiration that your brother might have or his preferences?
“He can negotiate! I mean there are a lot of things he’s wanted that I have stepped up for him and asked for him. Well, I think as I get older I can appreciate more that he has opinions and decisions and it’s not always about me. And if he was a typical sibling, what would I have to say about it? He is capable of choices. I’m not his guardian. I’m his advocate and that’s different. Can I help him with his financial matters? Yes, that’s a power-of-attorney. Can I help him with his healthcare decisions? Yes, that’s a healthcare proxy. Can I help him advocate? Yes, I have legal documents in place, for that if we need them. Just like you and I should.”
“But knowing that he can make decisions; he’s not incompetent and he might not make the best decision. It might be frustrating to no end and yeah, there are frustrating tears and challenges. Yes, we have those. And sometimes they just need to simmer and walk away – this will pass. He’ll change his focus soon enough or not. So I can’t change his behavior but I can change how I respond to his behavior and that’s something I’ve learned. That’s called self-preservation and I’m not that powerful where I can do everything and be everything for him or for anybody.”
Interview- Part 3 of 3– Balancing Advocacy and Independence
What is interesting is what you have learned from your brother.
“Ron has made me to be a much more empathetic person. His being in my life has made me who I am today. He has helped to shape who I am. He’s helped to shape my whole purpose in my career path. That’s pretty profound! That’s pretty common amongst brothers and sisters: they become Special Ed teachers, attorneys, doctors, social workers, therapists. A lot of careers are shaped by our relationships with our siblings. Statistically that’s been proven, too. So I am a statistic.”
Families who don’t have a sibling with a disability, generally tend to pick their careers sometimes randomly.
“Right, well it’s just that they have a different baseline, a different viewpoint. We see things differently and sometimes the siblings want to go as far away as possible if they don’t have a sibling relationship. And again, it stems from the parents. How do the parents treat the child’s disability? Is it a disability or are there abilities? We always said that Ron had a can-do attitude versus a can’t-do, and that stems from the parents – the family.”
In some ways, having a sibling with a disability is an actual gift because of the perspective that it brings to the family in areas such as career direction.
“It makes you consider your career choices, your dating choices, your mate. Ron was always a stiff test for anybody that I brought home to date. He always asked them, ‘Do you like the Marshfield Fair? I love to go to the Marshfield Fair!” or, “Will you take me to Canobie Lake?” It would be winter time and he would be asking for summer activities with this guy. If they looked good to Ron, ok he’s great, I can do this. Or, if he didn’t pay much attention to Ron, he’s not a good guy. So it’s true that having a sibling with a disability impacts the relationships you form. There are a lot of statistics about this. I often present these statistics for the Mass Sibling Support Network. I’m one of the speakers on the research that’s been done. ”
You got involved at a very deep level with organizations that opened doors to new information Not everyone has that approach or the capacity to do so.
“No, and you don’t have to, but you do need to have and understanding of who you are and of the relationship you have with your sibling; that’s really important. Sometimes you need to have professional help to do that, but therapy is always a great thing. Communication from the parent to the adult children doesn’t always happen, and in these cases we need to encourage that communication on a professional level. It is very important that families build a team to carry on with the caretaking and guardianship and not leave it to one sibling. Often times if there are brothers and sisters, there is one sibling that is the “it person” and that person will do everything. But that is a huge burden to ask. It is important to build the right support network for your sibling. This may include members of extended family, other siblings, professionals, and even agency assistance. Working with an agency like CHS, you don’t have to be the day-to-day caregiver.”
How do you advocate on behalf of your brother to ensure his needs are met?
“Sometimes it’s easier to just leave it alone. If it’s not broke don’t fix it. But I go out, I learn about, and I re-educate families on different types of housing and how to make different types of housing situations work from a financial, personal, professional and public benefits angle. So that’s my journey at this point with Ron, to explore different options for him. One of the things I learned was when I thought I had found the perfect place for Ron to live. It was eight people in a house, everybody owned their own condo, and everybody was so active. I visited some of the homes with my mom and I remember thinking, ‘Wow this is really nice.’ Then I talked to Ron and he said, “Why would I want to live with all those people?” I had never thought to ask him before. It made me realize that what I think is best for him may not be what he thinks is best for him. You cannot look at a situation through your own eyes because the needs of the person you’re representing could be very different.”
“Preferences! He wants his own bathroom right now. He is tired of sharing a bathroom with people. I said, ‘You’ve always shared a bathroom, what’s different now?” He just doesn’t want to share a bathroom. We have four people and four bathrooms and my kids still share a bathroom and still fight over it. So when you think about what I have for my standards, it’s such a simple request for him. But I wasn’t thinking of that and it’s something that bothers him every day. So we have to address it and that takes time, energy, and effort. It takes guts to say hey guys you‘re doing a great job, but let’s explore this, let’s work together. We’re a big believer in options and creating options and looking at new options. We have to explore options because, I mean, most people don’t stay in their homes for their entire life and do the same things that they were doing in the past. People move and people change. Our preferences change. You know, we grow and mature. My suggestion to siblings is to become as educated as they want to be. You don’t need to know about everything, you just need to know who’s who in your siblings’ life.”
Thank you, Cynthia, for sharing your experience and perspectives on sibling support.