Symposium for parents of children with special needs to address drop-off in services

WEST BLOOMFIELD — The Jewish Community Center of Metropolitan Detroit has scheduled an event that can go a long way toward making life easier for parents of children with special needs.

A parent symposium is set to take place noon-3 p.m. March 12 at the JCC, which is located at 6600 W. Maple Road in West Bloomfield.

School services end for special needs children when they reach the age of 26, and according to Stephanie Zoltowski-Siordia, who is the director of special needs for the JCC, that is when a lot of services drop off.

She provided a synopsis of the parent symposium event.

“This is a three-hour event that is being held in March for families that have a child with special needs that is 14, 15 and up,” Zoltowski-Siordia said. “It’s to help with the transitional services. … A lot of families don’t proactively prepare for those transitions, so they haven’t done much with financial stuff, guardianship, residential. So this is an event that looks at the entire family from a holistic point of view to help prepare for those transitions.”

Topics that families can learn about at the event include financial planning, government benefits available and a “ton of different areas.”

There is no cost to attend the event. However, in order for the JCC to help ensure that there is sufficient supplies and food available, those interested in attending can RSVP to szoltowski@jccdet.org by March 8.

More than 15 agencies are expected to be represented at the event to help families tap into resources that are available in the area.

Angel’s Place, the ARC of Oakland County, the Disability Network of Eastern Michigan, Dutton Farms, FAR, the Friendship Circle, Gesher, JARC, JFS, Living & Learning, MORC, On My Own of Michigan, Parare Counseling, Rehab Pathways Group, SAIL and Open Arms Inc. are all set to be participating agencies at the event.

According to its website, SAIL, which is Solutions for Adult Interdependent Living, was established in 2019 by a group of parents committed to finding housing solutions for adults with developmental disabilities.

Kathy Remski is SAIL’s president, and at the event, she intends to discuss models that are currently available that are “financially accessible” for families and Medicaid-compliant, allowing for individuals with special needs to “live their best and fullest life.”

“What I will speak to is encouraging parents that this can be done, that there are steps to take even if you aren’t ready for your loved one to move out,” Remski said. “There’s definitely things families can be doing to … wrap their arms around an opportunity or a solution (where) maybe they’ve been scratching their heads saying, ‘I don’t know what to do, they’re just gonna live with us … I don’t know where they can live.’ So SAIL’s here to support families’ efforts to create a housing solution and, hopefully, connect them to other families with whom they can work to develop that housing solution.”

Zoltowski-Siordia provided other specific examples of what parents can learn about at the event.

“The services could be for someone that maybe is 28, but the parents are looking for them to get into another residential style of living, so maybe they want an apartment with a roommate,” she said. “It could be even setting up a special needs trust. So it could be elderly parents that have a 45-year-old and they need to have some kind of a trust set up for when they’re no longer around to take care of their child.”

Families who attend the event can leave with a lot more knowledge about how to make the journey of being a parent of a special needs child an easier one.

“It’s for parents. It’s for the kids. It’s services to help address every component of the family, so there’s going to be a resource fair, there’s going to be a guest speaker who’s talking about kind of like a parent-empowerment speech,” Zoltowski-Siordia said. “We’ll also have some parenting activities to kind of connect the families. … There’s a lot of families trying to do all this work on their own, and there’s a lot of other families in very similar situations, so we want to connect a lot of those families to kind of show power in numbers and really give them a chance to connect with other people that are in the same situation.”

Zoltowski-Siordia shared her perspective about one of the most important pieces of information attendees can learn at the event.

“I think the importance of starting early and being proactive, because a lot of these government benefits take a really long time to get, and a lot of parents have to file appeals, and they have to submit additional documentation,” she said. “So being proactive in the rights their children have and the benefits will only make … their lives easier. So, it’s really an event to encourage families to be proactive and get started early so they’re not panicking when their child turns 26.”

Zoltowski-Siordia’s role with the JCC has helped her understand the challenges that come with being the parent of a child with special needs.

“I think it’s easy for people who aren’t familiar with this population. I think it’s easy for them to forget that it’s a 24-hour-a-day job for these parents,” she said. “It’s not like an 8-4 kind of thing. It’s 24/7 that these families are struggling. … And I think a lot of people don’t realize the cost of raising a child with special needs because of the extra therapies, the extra medication that they may take, the adaptive equipment they may need.”

Zoltowski-Siordia said it’s an average of $65,000 a year to raise a child with special needs and explained the challenges facing parents.

“One of the biggest that I hear about is the lack of funding for programs, and also staff challenges, because there’s so many programs that have waiting lists because there’s not enough people to work the positions — whether it’s, like, a group home or at summer camp,” she said. “For example, our summer camp, we have staffing issues every year.”

Aside from learning new information and gaining resources, a bonus can come from parents of children with special needs interacting and getting to know one another.

“I think it’s a huge benefit to their mental wellbeing, in addition to the daily logistics of running their house, because something that I have heard from a ton of parents is that having a child with special needs is very isolating and very lonely,” she said. “So I think it’s really important that families can see that there are other families struggling as well, and that we can connect them with other families and kind of share some of the burden, brainstorm with each other, and help each other out.”