For kids with disabilities, the summer break from school takes planning, advocacy, knowing what’s actually available, and then figuring out how to access it. In California, Regional Center and the Self-Determination Program (SDP) can help families shape a summer that supports kids and their parents!
To learn more about summer supports, we sat down with Lisa Concoff-Kronbeck, Undivided’s California Public-Benefits-Specialist, and Iris Barker, Independent Facilitator and Undivided’s Self-Determination Consultant. They gave us tips for making sure our kids and teens have access to camps, social-rec, community aides, and childcare, plus insights into how that support looks different in a traditional Regional Center funding model versus the Self-Determination Program.
Kronbeck says that the first step is to look at your child’s Individualized Program Plan (IPP). Regional Center will only fund programs that help meet your child’s goals, so if you want to receive extra services over the summer (like respite care or summer camp funding), make sure to update the IPP goals first. You can structure the IPP goals to support the services you want to ask for, such as a goal about learning water safety if you want to support swim classes.
Kronbeck says, "You can make a request in writing or request an IPP meeting. Some Regional Centers are a little bit more formal, and they want all requests to be made in the context of an IPP. With other Regional Centers, you can email your service coordinator and make this request in writing. And then they'll bring it to the funding committee, if that's how they operate, but it just kind of depends on your Regional Center and how they approach that process. If you're already calling an IPP to address the goals, this would also be an opportunity to request additional services."
Check out this clip where Kronbeck gives her best tips for making a successful request:
She and Barker recommend following these tips to avoid common mistakes:
Consider all the supports and accommodations your child will need, such as a 1:1 aide at a summer camp, so you can confirm that the program you’re interested in will allow it.
Kronbeck and Barker agree that yes, there’s still time, but don’t delay! Kronbeck says, “If you need to request an IPP, it needs to be held within 30 days. So if you start now, that still gives you the month of May to get that addressed.” Especially if you want to enroll your child in a camp or program where spots fill up, be sure to get funding authorized as soon as you can. If you’re looking for a summer camp near you, check out our extensive list of disability-friendly camps all across California!
Regional Center does not allow duplication of services, meaning they won’t fund services during a time when your child is already supported. For many of our kids who attend extended school year (ESY), that means Regional Center won’t authorize extra funding for a camp or specialized supervision that overlaps with ESY. However, ESY is only part of the summer, so you can ask Regional Center for support to fill in the gaps.
Note also that Regional Centers typically have limits and caps on how many camps or hours of social-rec programming they will fund per quarter or per year. Each Regional Center does things a bit differently, so ask your service coordinator or review the purchase of service standards.
Kronbeck says, “There's still a lot of rules and regulations, and nothing's guaranteed, but on the flip side, there's a lot of things where you can ask for an exception on a limited basis. There's restrictions and flexibility on both sides of the coin, and it's really about what your child needs specifically.”
Barker says it depends on how far along you are in the enrollment process. Timelines vary, but for new transitions to SDP, she’s seen it take six months to a year or longer.
Here are her top tips for anyone considering SDP or those who are already enrolled — flexibility is key!
For traditional Regional Center services, it may be possible to get the service authorized, pay now, and then later get reimbursed. Kronbeck explains, “Some Regional Centers, especially those that don't have a lot of vendor providers for social-rec and camping, are allowing parents to choose to choose a vendor, pay for it, and then get reimbursed through the parent reimbursement process. Those services still need to be authorized ahead of time. So it helps if you start your search now and find out what your Regional Center's policy is on that.”
If you’re in SDP, you still need to get the service authorized before making an upfront payment. Barker says, “For most financial management services, they need to see it written that there's an approval from the Regional Center that it's okay for the financial management service to prepay XYZ camp. Typically, that written authorization from the Regional Center will suffice. It's very important that families have those conversations with the financial management service and the Regional Center.” She stresses that there is no reimbursement available in SDP, so don’t pay for a camp and expect to be reimbursed later without written authorization.
Barker says that the process is similar if you’re in SDP. As long as your child’s needs for support are outlined in the IPP, you should be able to request an aide in your budget and spending plan. You’ll likely need to provide specific details about the camp and how many hours the 1:1 will be needed. She says, “The way that the budget is built, it goes back to the justification for the service. The justification of why it's needed will need to be in place.”
Not typically. Kronbeck says that in most cases, “it's considered parent responsibility for children, whether that looks like driving your child or using public transit or paying for transportation. Most Regional Centers have this spelled out pretty clearly in their purchase of service standards.” However, there may be an exception “if you are in a situation where the parent can't drive, the family can't use public transit, Access Paratransit is not an option, the family can't afford to pay for private transportation, and attending the program is the only way that the child will be able to achieve the IPP goal.”
If you’re in SDP, Barker says it depends on whether your Regional Center allows transportation for minors to be written into a spending plan. Some do and some don’t, so you’ll have to check their policy.
If you’ve been able to secure extra respite hours for the summer, you may wonder if the respite worker can bring your child to their social-rec program or even just down to the neighborhood pool. Kronbeck says, “Typically, the rule is that respite is supposed to be happening inside the home to give parents a break from caregiving. Respite is supposed to be happening at home, and you're not supposed to transport the child. If they take the child outside for a walk, I don't think that's an issue, but they're not driving them around to their afternoon appointments.”
Our kids’ support needs don’t just disappear while we’re on vacation, but typically Regional Center won’t authorize respite to be used on vacation. Even in SDP, Barker says you’re subject to California labor laws, which don’t allow 24-hour shifts. It’s not impossible, but “make sure that you talk to your Regional Center, talk to your financial management service, and get the correct answers.”
Regional Center’s policy is to only authorize funding when no other resource is available. Kronbeck gives some examples: “Insurance and school districts are probably the most common. Another one is community programs that are available to everybody. For example, if you're asking for child care, is there an after-school program? Are there daycare programs that are open to everybody that you could access, regardless of whether or not the child has a disability? And what we find is sometimes the answer is yes. Sometimes the answer is yes, with some additional supports provided by the Regional Center. Sometimes the answer is no, we need something completely different.”
Kronbeck says, “If the Regional Center is putting pressure on you to use generic resources, part of their job is to help you find and access generic resources. So if they're telling you to use generic resources, ask for their help in accessing those.”
Barker adds, “Some schools provide that after-school care, but there's no 1:1 aide, so then the Regional Center at this point [could] basically kick in and provide that 1:1 in that after-school program.”
If the Regional Center says, "We don't do that," or otherwise refuses your request, Kronbeck says, "The first thing you want to ask is, 'Can you send me a copy of the service standards to show that?' Sometimes they'll be able to, and sometimes they won't because it's not in the service standards. So that's my recommendation to anybody who gets told no, over the phone or verbally, is ask for a copy of that policy in writing."
If the Regional Center still denies your request, Kronbeck recommends filing an appeal to resolve the issue. Whether in traditional or SDP, your Notice of Action will state the reason for the denial, so you can prepare your case. “This is another reason why it's really important to start early,” Kronbeck says. “It gives you time to iron out any wrinkles along the way, provide any additional supporting documentation if they ask for it, or submit an appeal if they deny your request.” She points out that not every appeal will go to a formal hearing: “A lot of these disputes can get resolved at the informal meeting or mediation.”
Thank you to Lisa Concoff Kronbeck and Iris Barker for sharing insights and answering parent questions during our live event! Check out the full recording (with transcript available) here in our resource library.
We have more live Q&As coming up soon, including an event with Aaron Carruthers from the SCDD about how California’s May budget revision could affect people with disabilities. To stay updated on upcoming events and other helpful resources, join our free weekly newsletter list!
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