- Just ahead on Black Issues Forum, racial and ethnic health disparities are a pervasive public health problem.

Research finds similar health disparities among people with intellectual and developmental disabilities, and these disabilities can have unique impacts on individuals within different communities.

We'll talk about those impacts on our Black families.

Stay with us.

- [Announcer] Black Issues Forum is a production of PBS North Carolina with support from the Z. Smith Reynolds Foundation.

Quality public television is made possible through the financial contributions of viewers like you who invite you to join them in supporting PBS NC.

[energetic music] ♪ - Welcome to Black Issues Forum, I'm Kenia Thompson.

The overwhelming majority of research has shown that blacks and other minority groups with IDDs, which are intellectual or developmental disabilities, have less access to healthcare and social services, thus resulting in higher rates of mortality and lower adherence to treatments.

To shed some light on these disabilities and provide insight on how to navigate them, we welcome to the show Nicole Harris, Disability Resource Advocate with the ARC of North Carolina and Nashonda Bender-Cooke, Wake County Special Education Teacher and Interventionist.

Thank you ladies for being here.

- Thank you for having us.

- Thank you.

- You know, we always like to start the show with just kind of explaining some terms that we don't always know the definitions of.

So Nashonda, if you don't mind, please explain or define intellectual and developmental disabilities for our viewers.

- My pleasure.

Intellectual development and disabilities is when a person has normalcies that are about the age range from three to six years old.

They do not, they show a below average intellectual and functional ability.

They have a hard time following social cues and understanding set norms, maybe have struggle with doing things that are a repeated pattern.

So it can happen normally through genetics, but sometimes it happens through things such as a stroke or a brain injury.

You never know, but it's there.

- And so Nicole, you know, when we do find that we're seeing our kids having some sort of delay or the doctor says there's a delay, how is that diagnostic process initiated for individuals that are suspected of having IDD?

- Yeah, so it depends on the age.

If you have a parent that has a young child and they have concerns and they start seeing signs that are concerning to them, the first thing that they would do generally is talk to their pediatrician and say, I have some concerns.

The pediatrician will then agree or disagree.

If they do agree with that, they'll say, okay, well let's just get you some contact information for a testing provider.

Depending on the age of the child, it may be services through the Department of Health and Human Services.

They have a department called the CDSA, and it stands for Children's Department of Services.

And so a parent can get a referral for that.

They can have their child assist and tested to see if they have an IDDA developmental disability such as autism.

If it's an adult, that person would contact a psychologist or a psychiatrist and they could also go through that route of telling their doctor, saying, you know, I have some concerns for myself.

And they will say, well, here's a referral to a psychologist or a psychiatrist.

And also for younger children, you have what's called a developmental pediatrician.

That person is specialized in doing testing and assessments for IDD such as autism or an intellectual disability.

So there are some different routes for younger children.

For adults and older children, it would be through that psychologist or a psychiatrist.

- And you've mentioned autism now a couple of times.

That might, I'm guessing or assuming, is one of the most more frequented diagnoses.

So what are some other diagnoses that might come out from, you know, going to the doctor and having some of these tests done?

- Again, autism, intellectual disability.

There are other developmental delays or disorders.

One is called Fragile X, and there's some other ones that deal with chromosomal differences and discrepancies for children.

You know, you have the more obvious things such as down syndrome, things that, you know, are more prominent in features in a person.

But with intellectual and developmental disabilities, sometimes that could be also characterized as indivisible disabilities.

You sometimes we hear the term, you know, well, they don't look like they have dot, dot, dot, right?

And it's not about a look.

It's about truly assessing that person's needs, how they're functioning as Nashonda has said, and to see what supports did they need.

Yeah, so.

- So Nashonda, she said that some of these signs may be invisible, you know, if we have a child that we are maybe concerned about, you know, we're not quite sure.

What are some additional signs?

I know that we've shared a few, but what are some specific signs or additional signs that you would say might be indicators that we need to seek further assistance?

- Well, again, this can happen at any age, but some of the signs that you could see at any age that would be symptoms, could be restlessness at night.

It could be not understanding, as I said, social cues, academic issues in the classroom, cognitive and functional abilities, not being able to self care.

A lot of things such as hyperactivity, again, inability to rest at night.

Impulsivity are things that we see in the education world as well as what we could see at home.

These are some signs that you would wanna look for.

And if they're continuously, if they're consistent, if you've tried different things at home or at school that don't, are not effective intervention strategies, it is time to seek professional help.

- And you'd say that these signs are pretty across the board for any race, and, go ahead?

- It is, it is, you know, for any race.

But I think what we have to be conscious of is how Black and brown families respond to these characteristics, traits.

Sometimes we think hyperactivity, well, that's just a boy being a boy, or, you know, restlessness, you know, obviously they're not sleeping at night and maybe we try other old-school remedies for it, but they are true signs of something more, and it's more than what's going on and what we may assume initially.

- Nicole, earlier on, Nashonda had mentioned, you know, genetic factors.

Are there any known genetic factors or prenatal influences that might contribute to having IDD?

- Yeah, well, over the years there have been a ton of research studies done, you know, that, and they do suggest that there are some genetic factors.

If you look at families, there may be, you know, a sibling, siblings that have developmental delays or all siblings may have autism.

You know, and then there's also factors that could happen as far as, you know, some type of difficulty or challenges during the prenatal period for the infant in the womb.

There may be some, you know, some things that may have happened that affected their development, their brain's development.

And I think that's kind of what helps to kind of dispel the stigma with disorders like autism and those that are intellectual in nature.

They are described sometime as behavioral disorders where really it's where the brain just didn't function, didn't develop, and therefore is not functioning as it typically would, right?

And so when you look at genetic factors, when you look at things that may have happened in the womb.

For me that kind of helps dispel that myth of this is just like you said, a kid being stubborn or this is poor parenting, or things like that.

These are, you know, medical factors that have impacted the brain's development.

And then you have someone who's autistic or someone who has a, you know, intellectual disability.

I think that needs to be remembered and it can be, then that helps you to process a diagnosis if you're a parent, understand it, and get the appropriate support that you need for your child or for yourself.

- Yeah.

You mentioned a key thing there, right?

Understanding as a parent.

I think that that's probably one of the hardest things.

we think IDD just impacts the person, but it impacts the family as a whole.

Nashonda, how have you seen IDD impact the family?

Has, is delay in accepting the diagnosis part of maybe our community's lack of being up to date as we can be with having services and diagnoses for our children?

- You know, initially I think families go through various emotions such as guilt, denial.

There's a lot of stress.

There's a lot of times where studies have shown that parents of children who have intellectual disabilities are very close to having post-traumatic stress disorder themselves.

There's a lot of guilt that you may feel of, what did I do wrong?

Is it something that I didn't do while I was pregnant?

Frustration with not understanding.

It's very difficult on the, with families and siblings as well and other families.

And what's even more probably difficult is when your family members or community members are not supportive.

Where they feel like, you know, it's just you're not parenting right.

You need to be a little bit more stricter.

Your discipline is not appropriate.

You know, things like that.

But, and then that just weighs on the relationship as well.

And then, you know, you have your conversations between typical siblings who are not suffering and what they have to go through as well to support their sibling.

Because normally they're the ones at school with them.

You know, so they have to protect them from bullying.

- Yeah.

- And that's very stressful on our students and our siblings.

- Yeah.

That's a lot of pressure.

- Absolutely.

- I speak firsthand.

I have a brother who's autistic, who's been diagnosed autism.

And it, I remember being in school and having to be the big sister, not just in the traditional sense of big sisterhood, but to also protect him 'cause I saw that he needed it.

And so, you know, one thing that we experienced through our journey was just the lack of representation of black providers in this space.

Nicole, well, you know, I'm so fortunate to have met you because I feel like, you know, there's a sisterhood there and understanding what my family has gone through and what we need.

Let's talk about representation in provider space.

We've talked about this in different health areas and it's always the fact that we don't have enough representation.

Is this the case here too?

- Yeah.

Well I'm excited that there's more and more representation.

Just the fact that Nashonda and I are collaborating together.

We're working with programs with UNC, with NC State, so that shows that there's progress there.

When our children were diagnosed, you know, like she mentioned, you have to face the stigma within the community sometimes.

And then also, you know, kind of put yourself out there and be vulnerable and try to connect with providers and connect with other people who have gone, you know, or gone down the journey that you're getting ready to go down.

But what's most exciting to me now is that I'm seeing more and more representation of black providers in the IDD field at college campuses like NC State and UNC.

There are professional, you know, people, black people who are in leadership roles over programs, over research projects.

I'm very fortunate through my work with the Autism Society to be involved in those processes, to be connected with people like Nashonda and yourself.

And so we're seeing the turnaround of agencies that historically they did not represent the diversity of providers in the field.

You would not see a lot of black IDD providers at agencies here in North Carolina.

But you're starting to see more and more and thankfully through social media and you know, and through the progression of agencies kind of waking up and realizing that they need to be more diverse in their hiring of IDD professionals.

You're seeing more practices, having more therapists, and you know, more counselors who are black.

I'm very fortunate that my children have black counselors, they have, you know, black therapists.

They have people who are people of color that look like them who are servicing them.

And so we're seeing, you know, a new trend.

Still more work to be done, but there are a lot of good projects that are going on right now that Nashonda and I are involved in that are helping to change the course and, you know, and change the pattern of not seeing yourself when you're trying to get help for your child or for yourself.

- Yeah, I love to hear that.

That's great.

'Cause it's so necessary.

And then especially when we talk about the school space, educational space, Nashonda what are some challenges or eases that families may experience in the school system?

- I think what we're able to do is partner with them for their students educational process.

A lot of times families will grieve a pending future and we're able to show them that that's not necessarily the truth.

There are things that we can do as educators, in particular high school programs where we prepare our students who may not necessarily go to a four year post-secondary education institution, but they may go into the workforce.

So we're able to prepare them for that future and a successful future.

So we help parents come up with a different definition of success, a different reason why a high school diploma is necessary.

And we partner with them to experience other emotions such as joy and, you know, greater connection and an appreciation of life.

And there's a lot of times where our community members partner up with schools as well, where we have an increased spirituality in the families.

And we are really a village when it comes to preparing our students for their successful life, no matter what that may look like.

It doesn't necessarily have to be sitting in the classroom and getting a bachelor's degree.

They could be the very best barista, you know, it could be someone who you go to when you need support in here in the studio.

- Yeah.

- They are in our community.

They're part of our community.

So it's not shunned.

And as an educational professional, we're able to help parents navigate to that possibility and also increase confidence in our students.

Let them know that they can be successful when we celebrate their progress.

You know, we don't necessarily focus on getting to a particular score on an assessment.

- Right.

- It's what have you learned this year that's different from last year.

What are you confident in?

What are you able to do that you weren't able to do?

And then advocacy is a big piece too.

We want our families to learn how to advocate for themselves, but then we also want our students to learn how to advocate for themselves either and for each other.

So that community, that bond is stronger with the partnership with the village that involves the community of educational.

- Yeah.

- Support systems.

- Nicole, I see you agreeing immediately.

Do you have anything you wanna add?

- Yeah, I mean, my family has benefited from exactly what NaShonda has said.

You know, I have three children, and I have a son who is on the autism spectrum, and he's a teenager now.

He's just entered high school.

But we have been very, you know, grateful.

We've been very blessed for him.

He has not had a hard journey because of my career in human services, because of me connecting with people, me being aware of programs and supportive services.

And also I just decided, you know, and it was not easy, but I decided the best I could to have a collaborative spirit with his school team.

We didn't all agree, I might not have liked this person or that person or whatever, but it didn't matter, right.

We were there to create a support system for my son and he has thrived in public school.

And I know that's not always the case and I know that could be a different story.

But he has thrived, he's won awards from the district.

He's met the superintendent, but that has been through his hard work.

But also through the people that I trusted, you know, for him to be with, and also that I decided I was gonna collaborate with, and I was gonna have a kind of like a spirit of collaboration with them.

And some people, like I said, you know, that doesn't always work that way, but you find those people who are gonna be in your corner.

Like the NaShonda's, like those teachers, that you know that sees something in your son and in your family that you know that you wanna be there and help support, have the best future for them.

- Yeah.

- We've benefited from that in public school and services from the counties, services from entities around the state.

- Yeah.

- And so it's possible to have you go through the grieving process, you go through the why me's, and you go through facing stigma and judgment, and all of those things as a parent of a child who has special needs or an IDD.

But it is possible to have experiences through those hardships where you see that your future for yourself and for your family, for your child, that it's gonna be okay.

- Yeah.

- And that's what we all just want to hear that it's gonna be okay.

- Indeed, I love this, 'cause we're already shifting into the solutions, right?

So that was the next part of the conversation is I don't wanna talk so much about the problems necessarily, but now let's talk about solutions and treatments options.

So, you know, we found out that our child has been diagnosed with an IDD, an intellectual developmental disability.

So Nicole, I'm coming back to you.

Continue that.

Let's talk about access to care and treatment.

You made mention to different programs that are out there.

How does diagnosis impact access to support services, therapies, and educational accommodations?

- Yeah, so getting that formal diagnosis is huge.

However, there are obstacles and they have been since the pandemic, I would say, with getting or accessing testing with actually accessing a provider to do testing to get an assessment done.

There are very long wait lists right now for that.

However you wanna know, what can you do while I wait, so it's gonna take me six months to get a diagnosis.

What can I do while I wait?

So what you should do is connect with those community agencies like the Autism Society, like the Arc, like Easterseals.

There's a number of agencies in our local communities here in North Carolina that you do not have to have that formal diagnosis just yet in order to get the support, to get some services that you would need.

There's parental support, there are support groups and social groups for people and for families.

And so even though there's, you know, the wait list, and that's hard to wait when you know that something's going on with your child or with yourself and you're told wait six months to get tested.

That's incredibly hard.

However, there are programs and agencies that are aware of that and have a plan in place to help you and support you.

Again, with the Autism Society, with the Arc, with your school system.

And you know you get, generally, you get that educational, psychological exam, you know, through your school.

A lot of times that's the track that you can get testing for your child.

But some services and programs, you have to have what's called a medical diagnosis of autism.

That educational psychological exam will not take, you have to have something medical, more formal if you will, but there's a wait list to get that testing.

So what do you do while you wait?

You get connected with community resources with other parents like myself and NaShonda, with siblings.

You get connected with people and you create a network, a village, a support system.

And you do that while you wait.

And that's what we really wanna, you know, tell first time parents and parents of newly diagnosed children.

People who are new to the journey that although there are some for sure obstacles with accessing services and getting support, there are ways around that, so you can still have the support you need.

- Yeah, thank you for that.

Nashanda, you mentioned earlier about being your child's advocate, especially at school.

What do we do if we're finding challenges to advocate for our children at school who are diagnosed with IDD, or who may not already have a diagnosis?

- As a parent of a child on the spectrum as well, I've faced some of those obstacles knowing that I've sat on both sides of the IEP table.

What I would suggest is don't take no for an answer.

Find someone who will listen to you, find someone who will hear out your concerns.

And sometimes your support system in the educational field is not the lead teacher.

Sometimes it's that teacher assistant.

Sometimes it's a therapy provider.

Sometimes it's an administrator or a counselor.

The village is not just one person who determines, it's when we have IEP meetings, it's a team decision.

So it's not just one person.

You can also find support with, again, like I said, the siblings, but they need support as well.

Siblings will need their own space.

My oldest daughter loves her sister, but we had to find a space for her to make sure she got what she needed.

So when I would receive services for my daughter, no was not an answer that I was going to be able to accept because I knew that I had another child that I needed to focus on as well.

So we would get early interventions and make sure she had what she needed.

And if someone told me there is a wait, I would get on that list.

Don't let the frustration get to you.

Don't let the fact that you don't like the doctor's bedside manner prevent you from going to see this person.

Just my advice is keep asking.

- Yeah.

- Keep asking, keep finding support from someone who you may not necessarily, as Nicole said, like, but you know they know how to help you and your child.

- Yeah.

- No, great advice.

Nicole, we're at a stage now where, for example, I'm trying to find solutions for long-term care.

I think, we do look at IDD diagnoses early on and we think, okay, what do we do while they're in school?

But then they grow up and they want to become people of their own.

And sometimes they can, sometimes they can't.

- Yeah.

- How do we plan for long-term care in instances where it's needed?

- Right.

Again, going back to those community programs within agencies that have programs that are focused for individuals with IDD and their families.

They can help you and basically do the work for you.

They can give you contact information and referrals.

Because you have to go the route of, if you're a sibling, will you be your sibling's guardian at some point for your parents?

So that involves some legal matters.

So you need referrals to attorneys and agencies like that who specify or specialize rather, in special needs care and caretaking for special needs.

So you have providers in legal fields that actually specialize in that, that could help you.

You have community agencies and programs that have services that are specifically for siblings, for adult siblings.

And they can guide you on residential programs should your sibling not live with you and they wanna live on their own or in a community of other individuals like themselves.

But these community programs, they're there, and they have a plethora of information to guide you and to help you access services for the future, for future planning like that.

And so it's just a matter of getting connected and staying connected.

My children, they're teenagers now, so they've got a ways to go, but my daughters will be at some point, my son's caretaker, if they choose to be and they need that information.

So you gather it, you join networks, you join support groups that you know are gonna be continuing to do the work for the long run in the future.

And you stay connected with them because there's, over the years, there's always evolving resources and evolving services.

And you gotta stay connected to those pivotal agencies in your communities that will be in touch with that, that will be able to give you information with that as it comes to them.

- Yeah.

- It's important to stay connected.

It's very isolating having a child with a disability with special needs.

Your family can kind of be like you're on an island.

You're very isolated.

- Yeah.

- And the tendency is to just stay that way.

- Yeah.

- But with caretaking and with loving and supporting and properly being there for someone who has a disability, you have to stay connected with your community.

You gotta have it.

- Well, thank you so much.

Nicole Harris, NaShonda Bender-Cooke, thank you so much for being here with us and shedding light on this topic.

- You're welcome.

- Thank you.

- Thanks for having us.

- You're welcome.

- We hope you found that show insightful and we invite you to continue engaging with us on Instagram using the hashtag BlackIssuesForum.

You can also find our full episodes on pbsnc.org/blackissuesforum and on the PBS video app.

Thanks for watching, I'm Kenia Thompson.

I'll see you next time.

[upbeat music] ♪ - [Announcer] "Black Issues Forum" is a production of PBS North Carolina with support from the Z. Smith Reynolds Foundation.

Quality public television is made possible through the financial contributions of viewers like you who invite you to join them in supporting PBS NC.