The Reality and Brutally Honest Truth about Special Needs Planning

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imgresPart I
What I Learned and What You Need to Know
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 had heard of the importance of deve
loping 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: Sibling Support Network Edition, on page 3. 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 of 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.
Part II
When Do You Get Siblings, Caretakers Involved?
The siblings of your son or daughter with special needs are probably much 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, case workers, 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?
Part III
Responsibilities and Solving Problems
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.
If your child is not living in a group 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, for us as siblings, to bring her in to 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. 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 as if you need to get things in place in a few months. Are you prepared? Are your son 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.

7 thoughts on “The Reality and Brutally Honest Truth about Special Needs Planning

    Peg Sullivan said:
    September 17, 2016 at 1:38 am

    Great piece, Patric! I have forwarded it to a very close friend with a granddaughter with Down Syndrome just starting high school in Mansfield. It makes me proud to have been a part of LABBB and see it continue to make such a difference in the lives of our students and families. In giving a part of yourself here, you continue in the LABBB way.

    Ann Guay said:
    September 17, 2016 at 2:38 am

    Excellent article Patric. I will be thinking about this all weekend. Would you consider submitting to the Arc or another advocacy group for a larger distribution?

      Patric Barbieri responded:
      September 18, 2016 at 11:45 am

      Hi Ann,

      Thank you. I submitted it to the minuteman paper, hopefully they will like it. I did hear from Leo Sarkissian, he read it and emailed me about it. I was thinking of submitting to other groups. Do you have any recommendations on advocacy groups that I should submit it to?





    Kay Murray said:
    September 17, 2016 at 3:12 am

    Dear Patric,
    First of all, I had no idea that your parents both passed away. How did I not know? Our community is caring & involved with each other in so many ways… one more lesson to add to your list, I guess. We do need better ways to stay in touch so we can all do a better job of taking care of each other. I am so sorry that your family no longer have your parents here with you; so glad that you and your siblings have each other.
    You know our family – how close all the sibs are (remember the old neighborhood?). They are all legal adults now. They all care very much for each other & intend to support each other when Rick & I can no longer be the primary caregivers. However, your article really hit home. They do all have their own lives to keep up with as well. None of my kids would know where to find all of the info you listed. So much is kept in my head – or on scraps of paper that I intend to put together “some day.” After reading your letter I realize that I need to put together one of those spreadsheets & share it with all the kids via a common Google drive or the like that we all have access to & that can easily be updated.
    Thank you for sharing this very important, though painful to face, information with us. Thank you for all that you & the LABBB team have done for so many of us over the years.

      Patric Barbieri responded:
      September 18, 2016 at 11:32 am

      Hi Kay,

      Great to hear from you! Yes, I remember the old neighborhood. Thank you for your email. It was a difficult and emotional article to write but I felt that I really needed to share my experience with others that someday will be in the same position I am. I will be at the reunion dance next week hope to see Doug there. Thanks again for touching base always great to hear from old friends. take care.


    Laureen Crosbie said:
    October 27, 2016 at 9:51 am

    What a great article! I have been working with people who have disabilities for 35 years. Loved every minute. Thank you for sharing this first hand account of what a sibling has to figure out after their parents have passed. Getting all these things lined up is so important for everyone involved. I have passed this along through my Facebook page. I know it will reach many who will appreciate your thoughtful words. Thank you!

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