Share with us what motivated you to advise families on disability planning and benefits.

When I first started in the consulting and financial industry, and even now, I feel that there are tremendous knowledge gaps in navigating benefits and planning for a person with intellectual or developmental disabilities. I get tremendous satisfaction when I can help someone understand how systems fit together and they can develop a viable plan for their child. This feeling is only more pronounced when it is a problem that no one else has been able to provide technical guidance. I started in the financial industry knowing that I wanted to help people that also had a family member with a disability. What I’ve come to realize is sometimes it’s not even about solving the problem as much as it is providing the validation that “Yes! I get it! I hear you, the rules don't make sense, but let's figure it out".

Who do you envision in the future, besides yourself, as caring for your sister? In other words, who could be in her Circle of Support?

That is such a great question. To be honest, I am not entirely sure what the future holds for my sister, Nathalie. I think people would probably be surprised in hearing that I don’t have all the answers for my own family, but I don’t! It’s complicated. My parents are divorced, and they have differing opinions on how things should look… my sister is also very much her own person and has strong feelings on how things should look as well. I would think Nathalie's boyfriend, my middle sister Emily, Nathalie's friends from school, and work colleagues would likely be part of her circle. Nathalie has also started singing at open mic nights, and I can see community forming around that as well.

Do you have any advice for adult siblings on balancing caring for their sibling with self-care and caring for one’s own family?

My wife and I talk about this often. My wife is very much a planner and we have (soon to be) three kids. We are always trying to be intentional about our future decisions to make sure that if and when we needed to step in, we are able to. In caring for siblings and managing one’s own family, I think boundaries are important. At certain moments in the past, I’ve flexed into more of a parental role, and I’ve had to learn to just be big brother. I’ve also had to learn to let Nathalie fail at things. I always want to ‘save the day’ but sometimes that’s not the role I need to play! You can’t be everything to everyone.

Alternatives to a Special Needs Trust

By James Traylor

If someone does not have the means to establish a special needs trust, they could use a community based pooled trust such as NYSARC, Future Care Planning, etc. This can be an alternative until the account balance is consumed. That said, these agencies may charge less than an attorney to set it up but then charge monthly fees that may eat up a small account.

Someone could also potentially establish an ABLE account for a small sum of money of $18,000 or less. Also, there is a quarterly fee of around $11.25.

At the very least, it is important that someone set up a trust within their will. Even someone with very modest assets needs to do this as a responsible parent. Otherwise they leave the distribution of their money and belongings up to the court; no matter how small their assets are.

If they truly have no funds, then they need to find a strong non-profit partner that is going to hopefully be here for the next 50 years because they are leaving their child without many choices. Or have a strong family network that will provide this support for free.

Aracely, Xavier, and Luis

Xavier Velazquez – Being Luis’ brother



How do you support Luis? I support my brother in many ways. We are a very close family, and we all support one another. I am always there for him. I even work for him as an aide under the CDPAP program (Consumer Directed Personal Assisted Program). I support him with assisting him to get out of bed, dressing, bathroom needs, and bathing. I make sure I am available to support him in whatever he needs. I am always there to listen, encourage, and support him physically or emotionally.

What activities do you enjoy doing together? We enjoy playing video games, listening to music, going out to dinner, and family gatherings.

Is it ever hard to have a brother with a disability – in what way? When I was younger, it was hard, as I wanted to do things with him that other siblings would do, like go to the playground and go on the swings or go to parks to ride roller coasters. I was young and didn’t understand. As an adult, I find it is hard when we want to go somewhere but are unable to because of lack of accessibility.

Do you think about your brother’s future and what role you may play in the future? As a family we have always talked about his future wants and needs. Together we have come up with multiple plans and the roles that each of us will play.

Aracely Velazquez – Being Luis’ sister



How do you support Luis? I support my brother by always making myself available to him. Whenever he needs support Luis is comfortable with letting me know. I’m always available to listen and provide him with my perspective, ideas and suggestions. At times I help him with things related to his physical needs, like getting something from his closet or drawer or cooking something he wants to eat.

What activities do you enjoy doing together? We watch movies and go out places like restaurants, parks, and shopping.

Is it ever hard to have a brother with a disability – in what way? At times it can be hard as his disability not only impacts his daily activities but at times his social and emotional wellbeing. Because we are a very close family, we are all impacted.

Do you think about your brother’s future and what role you may play in the future? My family and I have had multiple conversations with him that include the roles each of us will play in his future. It is very important for us to have a plan that not only supports his needs but that he is comfortable and happy with.”

“Hi I’m Andrea; Nick’s sister.” This is a greeting I have found myself using over and over again since high school. My brother Nick is just about the most social person I know and knows more people than I will ever know. In a lot of typical sibling relationships, I think there tends to be resentment when one sibling is the “shadow” of another. In my case, using this greeting in order to orient a stranger to my place in Nick’s life, is my biggest source of pride. This pride will never go away.

However, in recent years, I can’t hide that I’ve become more anxious than ever about what mine and Nick’s future is going to look like. I remember going to one of Nick’s Circle of Support meetings when I was in middle school. My incredible parents never pressured me to take on more than a typical sibling should when it came to my brother, but even back then in that meeting as we touched on scary topics such as “the future,” I vowed to myself that Nick would live with me when we were older. Now that I’m approaching my 30s, even though I cognitively understand that the weight of Nick’s future does not solely fall on me, I struggle to let go of that idea. Thankfully, I have my own incredible Circle of Support that includes my mom and a therapist both encouraging me to put less pressure on myself.



As someone who has made a career out of supporting people with disabilities, I think it’s important to put things in perspective whenever I feel worried. Nick could not have a better situation; both his mom and sister work for and with agencies that support him. Nick has some of the most loving family and friends in both Rochester and Pittsburgh, PA; the kind of people that would drop anything at a moment’s notice for him. My heart breaks for the people I’ve worked with that are not as fortunate as Nick is. Perspective and gratitude are the most important tools I have learned to use in thinking about my brother’s future.”

 

A Circle of Support can greatly alleviate the pressure on siblings to be everything to their sibling with a disability. And for a person with a disability who doesn’t have a sibling or close relative to care for them, it can be a very valuable support. What do we consider when building a circle of support?

THE 4 I’S TO CIRCLES

1. Intentional: Some relationships evolve more naturally. Circles are intended to connect people together in fun, meaningful, ongoing ways. Intentionality can result in genuine belonging and friendships.

2. Invitation: Involvement often takes an invite to join or become familiar with the Circle. Most people won’t come into a Circle if they are not invited. 

3. Interests: Building a Circle around the interests or growing interests of the person with the disability often results in new opportunities and deeper connections. The interests can be hobbies, talents, sports, politics, current events, spiritual or religious groups, or may be something totally new and unexpected. Think of it as a “Circle of Connections.”

4. Individual with disability: Build on the hopes, dreams, desires, gifts, etc. of the person with the disability. Support their active involvement and growth. Learn with and from the person.



From Inclusion Includes Belonging: How to Create and Sustain a Circle of Support, By Emma Fialka Feldman, Micah Fialka Feldman, and Janice Fialka. Editor’s note: Please click on the link and read the full article – great tips and insight!



This month, we are featuring Rochester Music Lab,

Travis Rankin is the founder and owner of Rochester Music Lab. He is an RIT (Rochester Institute of Technology) graduate with a degree in Music Technology, Music Performance, and Visual Culture, and studied Communication & Media Arts and Adolescence Education at MCC (Monroe Community College). In addition to playing and touring in bands and playing in concert, jazz, and steel drum ensembles, he interned as an Audio Engineer at WXXI and facilitates drum circles through the TIES (Together Including Every Student) program at Starbridge in Rochester.

Rochester Music Lab, inspired by TIES, aims to make music accessible to people of all ages and abilities. We offer a space equipped for professionals, beginners, and everyone in between, providing the necessary instruments and tools for any project. Our services include music performance and instrument lessons on piano, guitar, bass, drums, ukulele, steel drums, and voice. We also teach music composition using computers for film, animation, and video games, and offer audio engineering skills for recording music, dialogue, and sound effects. We recently expanded to a larger space and are adding a second location down the hall to accommodate more students and group classes. 

Growing up with amazing music teachers who inspired us, we now find the most rewarding part of our work is seeing our students grow and improve their skills. It’s awesome meeting new people and learning about their passions and goals and helping each individual work towards them. 

Join us for our 2nd Anniversary Party on Saturday, June 29th, from 12-4 PM, featuring live music from students, teachers, and area bands, as well as drum circles, snacks, and refreshments. Throughout the month, we host several drum circles focused on African drumming, Social jamming, a monthly Open Mic Night, a Songwriter Circle, a Music Sound and Exploration Class, and more. 

Since opening, we've provided voice work for the video game Clash of Clans and a WXXI documentary, recorded bands, hosted countless drum circles on and off site, started creating a video game, and played music in nursing homes and after-school enrichment programs. Whatever your musical needs, we're here to help you on your journey. For more information on how to access services, please see the contact information. 

Contact info:

Rochester Music Lab, 349 W. Commercial St., Suite 3150 (Third Floor)

East Rochester, NY 14445, (585) 750-8509, info@rochestermusiclab.com.org

“Don’t forget though that hope is never a solo journey. Hope comes from transparency, friendship, and surrounding yourself with people that encourage and support you. In fact, “agency” which is the motivation to pursue your goals is always about relationships with people you care about and people that care about you. But you have to make a choice to find and build those relationships too.” By Casey Gwinn, It Is All About Hope. 

Additional Resources

Supporting Siblings of Children with Disabilities, by Dr. Antwan Butler. Editor’s note: A former foster child who grew to be a licensed social worker, father of three, and pastor. Hear his story and his view on supporting siblings. Please search title on YouTube.

Evely’s Sister, by Luna Diaz, Tameka Diaz, Jessica Leving. “Created with the support of licensed clinical social workers with the aim of helping siblings of kids with disabilities identify, express and process their feelings.” Part of: A Project of The Center for Siblings of People with Disabilities (4 books). Editor’s Note: Perfect for young children. 

Adult Sibling Toolkit from National Down Syndrome Congress

Editor’s note: This comprehensive toolkit is a priceless resource for siblings or anyone caring for a person with a disability. Many of the worksheets apply to any disability, not just Down syndrome.

Resources for Adult Siblings: Future Planning, by the Sibling Leadership Network

Letter of Intent

Future Care Planning Services Community Pooled Trust – Editor’s note: Great explanation of pooled trusts, complete with all the trust forms included.