To read Paul S. Aronsohn's 2018 Annual Ombudsman Report, click below:
Tom Toronto is the President of Bergen County's United Way.
What are the main projects of the Bergen County United Way in general, and specifically impacting people with disabilities?
At United Way, we’re focused on affordable housing, both development and building. We focus on a cross section of affordable housing, and we have a particular passion for supportive housing for people with disabilities. We build both in Bergen and outside of Bergen - we just opened a 12-unit apartment in New Brunswick, and this week we have a groundbreaking for more housing in Wyckoff. Later this month we have more single family units opening up.
We made the decision a little more than a decade ago that we’d change our business model from redistributing donor dollars to other non-profits to focusing on one major challenge, which was affordable housing. There is always a lack of affordable housing, and in all types of needs assessments, affordable housing is the number one most visible commonality. The lack of affordable housing cascades into other issues, such as financial security. The only way to meaningfully address the issue was to actually increase the supply of homes people could afford. So we became a developer. We started to work with individual municipalities. Supportive housing became a big need since there were a lack of group homes. At one point, there were an estimated 8,000 or so people on the waiting list for people desiring community placement. That’s how it started. With the persistent need for housing, it gave us the opportunity to be somewhat innovative for people with Autism, which is what we did in Ramsey. From a design perspective as well as quality of life, over time we’ve seen happiness with the tenants.
What is the environment for affordable housing for people with disabilities? What are the major challenges and opportunities?
I think the awareness of the issue and the level of understanding is increasing. We’re finding that more municipalities, as a result of the construction and housing we’ve been doing, they’re much more open to supportive housing as a way to satisfy their affordable housing requirements. There’s a border acceptance and understanding among elected officials. The attractiveness of the projects, success in terms of community acceptance. The word has spread, and we’re looked upon as a partner for municipalities.
One of the main challenges that remains is funding. Building in New Jersey, particularly in north Jersey is expensive. Land is expensive, because we’re competing for all the pieces that make a project successful, such as amenities, proximity to transportation - if you’re located near a transit village, that drives up the price of the land. Then there’s the cost of building. Construction costs, permitting, approvals, engineering, architecture, legal, environmental remediation, there’s a lot that goes into these projects, and the costs are quite high.
What steps do you take, in any step of the development process, to ensure people in BCUW residences have access to important resources, such as transportation?
We’re not service providers, we’re developers. However, we do take responsibility for quality of life. We build where transportation is already available, or can be provided through Access Link, Community Transport, or service providers. We understand that transportation is vital for living a connected life.
What are some of the biggest challenges to building more affordable housing?
The most significant challenge for us is the time it takes to get to completion - it’s significant. Funding channels have gotten tighter and tighter. We’ve considered traditional bank financing, since government subsidies have become harder to get. Conventional bank financing adds another layer of cost, however.
What we’re looking at now is mixing market rate housing and supportive housing. We have a mixed market rate housing project in Fort Lee that opened a few months ago. Because of financing challenges, mixing market rate and affordable housing helps. Programmatically, it helps with regards to diversifying, having different groups living together, which is a good thing. We want to do more of the market-affordable housing.
What is the future of affordable housing for people with disabilities in north Jersey?
I am optimistic about the future of affordable housing. Confidence among elected officials is high. We’re looking at a piece of property now, which would use borough funds to build a group home on town property. There’s a heightened awareness from local officials. In the past, they’ve been mystified about the concerns people have had about supportive housing. People have always had fears about it. But the way we see it, each project we build strengthens the argument for building this housing. So many communities can build housing - and many have. Another indication of success is that towns we’ve built with in the past have invited us back. The comfort level with these projects is increasing, and there are quite a few more projects in the pipeline.
Find out more about Bergen County's United Way at http://www.bergenunitedway.org/
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
Andrew Meltzer is a Special Education Attorney with Sussan, Greenwald & Wesler.
What can be done, both short long term, to make the web of programs and institutions that make up the post-transition disability experience easier to navigate?
There are a couple of different approaches. For one, there needs to be much more transition planning at the school district level to advise parents on what DDD and other agencies do, and what they can provide. Districts are charged under the law with doing transition planning. However, that doesn’t always happen as much as it should. We help families with transition planning in school districts. Additionally, its important to collaborate with school districts. DDD needs to get involved earlier in the process. There should be more communication, more events, more information about what they can provide. Furthermore, we need to hear more from key stakeholders. That includes the state legislature, Governor Murphy, and DHS (Department of Human Services). They need to listen to parents and individuals - about what their experiences and problems are, in order to streamline the process. They have their feet on the ground, and we need maximum participation from them.
One big victory borne from that process was the out-of-state residential program fight. Governor Christie tried to bring every individual in out-of-state residential placements back to New Jersey, which would have caused massive disruptions to families and lives. Families spoke with their legislatures, testified in committee meetings, and they reached a compromise. As a result, many people were able to stay in those out-of-state placements. They was that concerned citizens worked with their legislators. Elected officials are often eager to help, but they need to know what is going on. Those in the legal and political worlds and consumers themselves can form strong alliances.
What changes, whether they be legal, policy, or social and cultural changes like shifts popular attitude would you most like to see in the coming years and decades?
In special education, we need to focus on what the Supreme Court said - that IEP’s need to be ‘appropriately ambitious.’ Following that ruling will help create change. It reinforces that disabilities are not burdensome - that people learn differently, and have unique abilities. With the right supports, that can make a huge difference. We also need more funding for special education. IDEA (Individuals with Disabilities Education Act) has not been fully funded in years. And this becomes a problem because school districts often use budgetary reasons to deny services. The law doesn’t care about budgets, but it becomes a big issue in practice.
School districts can do more. If a student has behaviors, realizing that there could be many reasons for those behaviors is important. Many schools have policies such as automatic disciplinary measures - which are harmful. Districts can look to see if there is an undiagnosed disability. The DOE (Department of Education) can go into these districts and oversee that. This is a key strategy to reducing the school to prison pipeline.
We also need better transition planning for the post 21 experience. The focus should be on the continuation of what special education calls for: ambitious programs that emphasize people’s abilities. To build on their independence and increase contribution to society, and maximize their contributions.
Another cause I’m very involved in is mental health reform. A lot of young people that suffer from mental illness don’t get treatment or even diagnoses. A lot of mental illness manifests between ages 18 and 24. And often times, services can’t be provided because people don’t know they are ill, and as a result they fall through the cracks. This is another cause that we need to look at seriously.
This quote is located on your web page: "My goal is to help special needs students attain the success in school and life they are capable of through my advocacy." I wanted to talk about that word, advocacy. What does advocacy mean to you, and what advice would you give to people who want to get involved disability advocacy, but don’t know how.
To me, advocacy is the ability to reject the status quo, to stand up for what you believe in and not accept that things will always remain the same. Everyone advocates in different ways. It could be something as small as not getting the right amount of change in a purchase, or something as large as being discriminated against. Advocacy does not just extend to the individual; it goes further than that. People who lack the ability to speak for themselves, they have teams that work with them. There are legal routes with attorneys, there are special needs parent groups, advisory groups to government agencies.
Stand up for yourself and others, and push for things to be changed. There’s a lot that needs to be changed, and its up to people, elected officials, organizations - really everybody - to create something different.
New York Metro Abilities Expo
May 4-6, 2018
New Jersey Convention & Expo Center
Fri. 11am-5pm | Sat. 11am-5pm | Sun 11am-4pm
For more information, visit: https://www.abilities.com/newyork/.
Andrew Meltzer is a Special Education Attorney with Sussan, Greenwald & Wesler.
Let's start with your personal background - what was your motivation to become a lawyer, and what brought you to special education and disability law?
My journey into special education law is a bit different. I like to joke that even though I’m in my late 20’s, I’ve had over 20 years of special education experience. I had an IEP - I had a lot of learning disabilities. For a number of years, it was a struggle. I walked in the shoes of people I represent. I know what its like to be in bad placement. I understand the stigma they go through.
In my situation, my parents realized that my placement was not appropriate, and they got experts to evaluate me. My district thought I had ADHD, but the evaluations showed I had something different and more specific. Once the district got that information, they switched my placements and supports, which helped me a lot. From there, I made a lot of progress. Even with an IEP, I took honors and advanced placement courses. I think the turning point was my parents instilled in me a sense of self-advocacy. In a sense, I became my own lawyer. I’d organize meetings between staff members if I was being treated unfairly.
Beyond that, I’ve always been interested in politics and the law. Becoming a lawyer was the best way to change the system. I became very familiar with special education law, and developed an understanding of how the mechanisms of the state bureaucracy work. Given my background, I was able to get a position with Sussan, Greenwald & Wesler, the oldest special education law firm in New Jersey.
It makes it a lot easier to advocate for clients when you have the same experiences, to have gone through that process with shared experiences. To be able to give them a sense of hope is very rewarding.
What are some of the biggest legal issues in the special education and disability communities?
We represent a lot of individuals in the post 21 space - people who are aging out or who have already aged out. A main issue people and their families face is something known as the special services cliff. The legal standards for special education are very high. The Supreme Court’s Endrew F. decision says that IEP’s need to be ‘appropriately ambitious in light of a child’s circumstances.’ In New Jersey, the standard for an IEP is significant and meaningful education benefit to a child. With adult services, it’s very different, and its a big shock for families. When one goes into DDD, the legal standards are much lower. The focus is on functional needs - food, shelter, things like that. It’s not about challenging individuals to reach new heights.
I think something that needs to change is adult services must more closely mirror the school experience. Kids make incredible gains in school, and the post 21 system doesn’t have the dedicated staff and resources to keep that progress going.
At the same time, DDD is going through a massive structural change. DDD gets services funded by Medicaid. DDD used to operate on contract systems, where they contracted out to different service providers. Now they are switched to fee-for-service, in which they only get paid for specific services. While it sounds like a good idea in theory, agencies are getting confused over what services they can and can’t provide. Often, they claim that they don’t have the budgetary resources to meet individual needs. It’s been a rocky shift.
Is the problem the fee-for-service model, or are there strategic decision that can make the transition better?
Fee for service will ultimately be a good thing. DDD administration and agencies have been as clear as they can be. The state needs to increase DDD case managers and staff - particularly the administrative staff. There are so many individuals who need DDD services. Everyone is overworked. Even though there’s a shift in how funding sources operate, everyone should be able to provide those services.
What is the state of disability policy in New Jersey? What impact do you see the Murphy administration having on the wide array of programs and institutions that impact people with disabilities?
With the Murphy administration in power, this gives the state a really good opportunity to make meaningful changes. With Governor Christie, a lot of services were cut - specifically education and social services. And a ton of problems developed from those cuts. With Governor Murphy, we need to go along with his progressive leanings and work towards greater accountability with agencies. Much stronger oversight is critical - especially with group homes. When incidents occur, whether their nature be behavioral, or injury and sickness among residents, they need to be communicated promptly. Many families end up getting in contentious relationships with group homes, because they’re not reporting incidents to families in a timely manner. When you place a family member a family member in a group home, there needs to be trust that they are safe, and that doesn’t always happen. We need more stringent standards for reporting, a better and quicker method for conflict resolution, and more funding for DDD services.
(Part 2 can be found here)
Ryan Roy is an Autism advocate from Saddle Brook, New Jersey. He has advocated for various lobbying and organizing efforts at the local, county and state levels to improve policies and conditions for people with disabilities. In 2017, he served as Grand Marshal of the New Jersey Disability Pride Parade.
There are a lot of people that want to be more involved in advocacy, but maybe don’t know what the right route is - there’s an information gap. You’re very active on social media - on Facebook and Instagram. Talk about all the forms of communication, whether it be traditional mail, email, social media, and what that allows you to do as an advocate.
I always get email updates when its time for me to get involved and make an impact. The council on developmental disabilities has been supplemental. They’ve been around for over 45 years to address problems that have been arising for people with disabilities. You also have those that are part of the independent living movement, and I am actually part of that as well because I believe people with disabilities can live independently on their own. They can contribute to society and make a difference and to inspire people. It’s really important because this is your life. This is no one’s life but your own. There's a lot of things you have to take into consideration. And this is something you have to do.
I know about CQL, the Center for Quality and Leadership, and they actually want people with disabilities to learn how to take control of their life, instead of being patrolled by other people. Because people need to learn how to be independent. Whether it be post-secondary education at a college setting, or working out at the gym, o going for therapy, and being in a day habitation program, and even going for competitive employment. Its individuals and their parents choosing. As long as it benefits everybody.
I'm just trying to keep myself alive and active, and people ask me when I’m going to go for employment. All in due time, when its necessary. And I’m a motivational speaker - I do so much of that. Hopefully - and I pray - that if it really happens to me, it’d be great! And I know I’ve always been involved in the community. I do so much community work - I fought for my town of Saddle Brook to be designated as stigma free. And stigma free is important because it has to do with behavioral and mental health, and I know that having autism spectrum disorder is related to mental health. And things like schizophrenia fit into that as well. One high school teenager, along with a young adult, committed their lives. And its just sad. And it hurts me a lot. My town today is going to be doing a grieving, and talking about how teenagers are supposed to cope, and deal with it, and accept it. And all along with moving on with their lives.
You have no limits. There’s no one who can control you - you set your goals for what you want to accomplish.
I want to talk about something that I’ve heard you talk a lot about, which is transportation. Which is a really big piece of the disability services world for adults. People without certain physical or cognitive disabilities don’t really think about transportation as something life-changing or transformative, but for people with disabilities, transportation is really a key to so many things. Can you talk about your experiences and your advocacy around transportation?
I learned a great deal when I was in the adults with autism day program.
I know its really important to learn how to use it to your advantage. When I was going to Trenton, my mom taught me how to take the train. Even though it was a pain in the butt, and my mom had to take me.
There was an occupational therapist who taught me how to take the bus. I take the bus very fluently. Even going on the train, even going on the northeast corridor, or going into the Raritan Valley line. I know this is something that I do. I even travel to New York myself, and I took the bus down to Port Authority. I make sure that I’m safe, and I did a little venturing on my own. Its kind of a scary feeling, but I know how to manage it myself. I even take cabs!
There's a lot to know when it comes to taking transportation, and getting me from point A to point B. The NJ Tips program, they teach individuals how to access transportation and be on their own. Its a lesson in how they’re supposed to survive. Instead of being stranded on the streets. I even took the plane two times, one to Poland for World Youth Day, and the other one to Oregon when I finished my term in June, for the Learning Community for Person Centered Practices. I do so much work as a motivational speaker, and I do so much inspiration to all educators, professions, and students.
You do great work, and at the Post 21 Club we really appreciate it.