Nicole Whitfield is the founder and Executive Director of the Special Parent Advocacy Group (SPAG).
We first met in 2013, and SPAG has grown so much since then. Talk about why you started SPAG, and how it’s grown, and what you do.
I started SPAG in November of 2011 for the purposes of advocating for children with disabilities in the city of Trenton. The reason why my husband and I decided to start it was because of the hard time we had with our son Alex. We couldn’t get the services he was entitled to through Trenton Public Schools. From there, we’ve evolved into a well rounded organization, not just advocacy. We also have respite programs - we originally only contracted with the state to do after school programs - the first special needs after school program in Trenton. Then we grew throughout Mercer County, and now our respite programs are servicing many counties, such as Middlesex, Burlington, Passaic, Essex and Bergen. One of our programs services the entire state. We’re opening up an overnight respite home in Pemberton - since children are entitled to six nights of overnight respite per year. We started doing respite programs in 2014. From 2011 to 2014 we were mainly an advocacy group, without funding, of course. The funding didn’t come until we were doing programs.
You’re extremely involved and committed to your family. Can you talk about the role of family in your work?
I have a birth son with special needs, but I’ve also adopted three special needs children through the foster care system. So in total, we have seven kids. It’s difficult work, but its rewarding work. We live it, we work it, we sleep it. Servicing people with special needs is just what we do. I couldn’t imagine my life without all this going on. It’s overwhelming, but incredibly rewarding. We’re doing a good thing, and we’re doing what god put us on a path to do. It’s a calling; you have to be meant for this type of work. And now some of the kids who started with us when we were younger are helping out at SPAG - some of them volunteering, some of them working, which is really gratifying to see.
What are the biggest challenges in terms of starting as well as sustaining a non-profit focused on disability services?
The most difficult challenges revolve around employees: hiring and retaining people. Ensuring that they’re the right people and that they’re in it for the right reasons, that they have the heart for this work. Because you’re not gonna get rich off these jobs. When you’re a direct support professional, your heart has to be in it. It can’t just be a job. Weeding through people who aren’t in it for the right reasons is a big challenge. Additionally, the balance between advocacy and respite. Our advocacy work is not funded, but we don’t feel that we can abandon it, because those are the principles we are founded on.
How has your experience been with the fee-for-service switch?
SPAG started as fee for service, so we have just tried to service as many kids as we have the capacity to hold. I do see that there’s an improvement in the FFS contract from when I started. And there’s far more kids getting services, and that dates to before Governor Murphy took office. Will it get even better? I hope so, because a lot of kids are still not receiving services. We were the only provider in Mercer County when we started. There are a lot more providers doing this kind of work now. So its definitely improving. But its also important to keep things in perspective. We’re looking at other states to expand, and its clear that New Jersey is one of the best places for these services. Other states don’t even have a respite plan, or the state doesn’t offer respite care. And I’m just talking about social and recreational programs - some states still use institutions. I know someone who moved to North Carolina recently, and she’s shocked because when it comes to services, there’s nothing. So New Jersey is definitely ahead of other states.
You service people who are bordering on age 21. What are some challenges you see in the transition experience?
The biggest transition challenge from our perspective (as under 21 providers) is what to do about participants who age out. One reason why we decided to contract with DDD is that they can still get that continuum of care. When they age out, I can just contact their support coordinator and they continue to get care, as opposed to them getting kicked out. It’s a real challenge for providers who aren’t contracted with DDD. One of the biggest post 21 challenges is that there are not a lot of day program options. We need more providers doing that work. Especially programs that promote community inclusion.
Part of the issue is that the state doesn’t offer any funding for education advocacy. It’s a huge issue. Any organizations that get funded have been funded forever. And the type of advocacy they’re doing has moved away from one on one advocacy. There’s no funding for organizations to help parents get through the application processes, like DDD and PerformCare. We help a lot of parents and families who don’t understand the process get eligible for DDD. We don’t get funding for it, we do it because its right. It’s a challenge.
Any other information about SPAG people should know?
We are doing a community inclusion program starting in the first week of July, in Bergen and Passaic Counties. We’re also opening a new office in Elmwood Park, as well as a respite program in Bergen and Passaic. We have a weekend and after school respite program, as well as a summer camp, for the last two weeks in August.
Additionally, we’re having a fundraiser on Tuesday, July 3, at Macaluso’s in Hawthorne, from 530-10. Anyone who is interested in buying tickets or donating can call 201-509-8961.
You can find more information about SPAG at their website, http://www.tspag.org