Episode-49-How to maximize care in children with disability

Good day and welcome to today's Dr. Inyo House podcast. Today I'm going to be talking about how to maximize care in children with disability. Disability can come in different areas. Some children can have intellectual disability, some can have physical disability, and some can have combination of intellectual and physical disability. Examples of physical disability will be kids who have problems

are the head and neck regions like kids with cleft lips or cleft palate that struggle with feeding. Also kids with hand and foot disabilities that prevent them from walking properly. Kids with extreme ball legs is an example or kids with extreme care leg or genital valgum is another example or kids who have feeding difficulties.

kids will have gastrostomy tubes that is tubes inserted into the stomach directly through the abdomen. All kids can have a problem with breathing, and they have breathing tubes things like tracheostomy tubes that help children in breathing until they are

respiratory apparatus could be corrected properly. So there are different types of physical disabilities, hundreds and hundreds of physical disabilities. So this is an example of physical disability. Kids with seizure could come under physical disabilities. Also, there are specific disabilities, like a speech disability, a kid who cannot communicate, or language disabilities, kids who have problems using their language, or hearing disability, a kid cannot hear.

or visual disabilities they cannot see. So, these are all part of physical disabilities that we see kids. On the other side there is intellectual disabilities that has to do with brain functions. In other words, the child is unable to understand things around him as expected of a child of that age. These are all intellectual disabilities. The causes of disabilities in children could be congenital, in other words, the kids are born with it. Or it could be acquired, in other words, the kids develop it after birth. Those are broad categories. Children are born with disabilities, or they get disabilities after they're born. Both intellectual disability or physical disability, people could be born with that, or people could get that after they're born. Some of these causes could be through the genes. They could be inherited, like genetic factors. Genetic causes could cause

both brain dysfunction or physical dysfunction. Things related to genes, like I said, could cause either intellectual disability or physical disability, or both. There are also intellectual disability and physical disability that occurs after somebody is born or begins in the womb and continues when a child is born. Things like infection in pregnancy could lead to cognitive or intellectual disability.

and it can also lead to physical disability. And of course, when a child is born, they continue to be exposed to things that can cause both intellectual disability and physical disability. For example, accident is a, who is involved in an accident can have both intellectual disability and physical disability, and infection also, malnutrition also. There's a host of things that could.

continue to cause intellectual or physical disabilities or both undiagnosed diseases like hypothyroidism. Hypothyroidism is good one. If it's undiagnosed at birth, that can lead to both intellectual and physical disability as well. So there's a whole bunch of things that can lead to either intellectual disability where a child does not function as expected or physical disability where a child doesn't communicate or get around like other kids.

of course, a host of medical conditions like seizure disorders, asthma, host of medical diseases diagnosed later in child could also lead to both physical and intellectual disability. The aspect of this lecture or presentation or podcast is to give the listeners ways to navigate or to help a child with physical disability or mental disability.

or cognitive disability or intellectual disability. That is actually the main purpose of this podcast to share with the listeners how to navigate the system because sometimes it's very difficult for parents to navigate through the system of trying to help their kids with either intellectual disability or physical disability. Now the most important thing is to, of course, to be able to recognize this condition early, to recognize this condition early and to make

early diagnosis. Okay, that's the most important thing to recognize this condition early and to make diagnosis early. Now the diagnosis could be made by specialized, at least in the United States where I practice, diagnosis is either suspected by the primary care doctor, the pediatrician, or suspected by the mother that this child is not developing very well.

This child has intellectual disability, the child is not talking, the child is not walking, the child is, I don't think the child is hearing. Or sometimes this could be anticipated right from birth because of all the screening done during pregnancy and after birth. Babies, at least in the United States, have screening for some of these conditions that can cause intellectual disability and physical disability. Those are the ways this is diagnosed, and that's screening.

or true mother's suspicion or parent's suspicions or father's suspicions or pediatrician's suspicion that this child has some disability. Idol, cognitive, which is intellectual, feasible. So, suspicion is most important thing. And then the child is referred to a specialized agency. At least in the United States, we have practice. We have a local birth to three agency where we refer children with suspect.

physical or intellectual disability. So, the birth to three agency who are the expert could make a formal diagnosis. Also, formal diagnosis could be made by, especially if the child is older, by a school psychologist. There's nothing wrong with a school psychologist in making that diagnosis, especially in an older child who is about five, six, who is already in school. Some schools have a psychologist who can make a diagnosis of intellectual disability, especially in things like autism, spectrum disorder, and attention deficit disorders, and so on. So, the school psychologist can make a formal diagnosis. Where I practice, there are agencies that specialize in making diagnosis, or they're interested in evaluating children for autism, autism disorders, autism spectrum conditions. And parents could also take their kids to these agencies, or the pediatrician can refer the parents

or the child to this agency. Getting a formal diagnosis is very important and of course giving the child all they need to succeed, all they need to triumph against those disabilities, which is what we call intervention. In other words, you try to provide care, you try to provide services to help mitigate some of these disabilities. How do you mitigate

some of these conditions. How do you alleviate it? How do you support a child to grow to their maximum intellectual capacity given their background of either physical or intellectual disability? How do you do that? Do that by referring them to appropriate intervention specialists. Basic referral programs or basic referral pathways include refer out to speech pathologist if a child is not speaking appropriately according to age. A speech pathologist

occupational pathologists to help work with the kids on motor movement, fine motor movement, coordination, walking, using their hands, and even eating. A physical therapist is also part of this team that help ameliorate or mitigate against some of these physical

physical challenges, physical disability in a child. So speech pathologist is part of the solution. Especially for kids who has speech impediment, physical therapists, I've referred kids to, for example, who are not working at age to physical therapists and occupational therapists as well. And of course, kids who have problem with speaking and language impediment, we referred them to speech pathologist to help them with those as well. School is a very important part of this program. schools in the United States have time for kids who are in special education who have challenges, either intellectual challenges or behavioral challenges, and they can allot some hours, they can spend some hours teaching them how to speak, guiding them, and providing speech and language intervention to some of these kids. the time they spend in school is the time they could

they could use to sharpen their language skills as well. parents to take advantage of that. Take advantage of that. Some parents like some extra, extra hours. That is okay. Usually I have parents who tell me that the two or three hours a child spend with speech pathology in school is not enough. And of course the parents could find extra help, extra speech pathologists, extra help with speech pathologists outside of school.

And of course the parents can also educate the child based on what they learn from the speech pathologist as well. At home, parents can do a lot, I said, parents can do a lot in continuing with whatever speech pathologist has started at school or at other institutions. is a combined effort to help a child who has a disability.

Siblings help a lot, especially if they're motivated they can help. part of the care. And of course kids with behavioral problems, mental health challenges like depression, disruptive behavior, anxiety, school phobia is also a form of disability. And these kids can also get some help either at school or outside school in a specialized program. Some institutions have behavioral health departments where they

who help kids with anxiety, school phobia, disruptive behaviors, and attention deficit, and productive disorders. It's always good to access whatever the school has and also for parents to seek extra help if they think they need extra help. This is very important. This could be arranged by either the parent himself or herself, or the pediatrician can help arrange for extra help for kids whose parents think they need extra help, outside from what they can get from school. And also, there's more global specialized therapy in addition to the basic therapies. There are more advanced therapies for some of these kids with disabilities, what I called global specialized therapy, like ABA, which is Applied Behavioral Analysis. Some parents are beginning to ask for that, especially in their kids with...

autism spectrum disorder and other disruptive behavior, they're beginning to ask for referral to ABA therapy. And I think that's a good thing. There's nothing wrong with that. Having some extra help on how to help your child get around the behavioral challenges of the intellectual disability or physical disability. So ABA is beginning to get noticed.

especially where I practice now. A lot of parents are asking for that. AB is basically where child's positive behavior is enhanced and encouraged and of course to the therapist would downplay child's negative behavior. And hopefully the positive behavior could overtake and blow them and become part of the child's regular activities.

That's what ABA is, is to enhance child's positive behavior with the hope that it will overwhelm the negative behavior and straighten the child's overall behavior. And it's using now autism spectrum disorder. And like I said, it's beginning to gain ground here. Another program which is comparative to ABA, but I have not seen that here in real practice. I've not seen people, parents asking for that, is DIR, which stands for

Developmental Individual Differences and Relationships, DIR, is a way to enhance the child's social-emotional core. In this program, the intent is to harness a child's social-emotional core. Social-emotional core is how a child relates to others around them. To harness that social-emotional core, and make it a pivot for more generalized development. In other words, when a child is able to relate to others around them, if that emotional core is well developed and explored and allowed to grow, that could also be a catalyst for other development in a child. So that's a cool tenet of DIR. But I haven't seen DIR in areas where I practice.

The thing that is very common is parents asking for ABA here where I practice in Connecticut. I think parents should, in this day and age, you have to go get it for your child. Parents should be a strong advocate for your kids. Persistent is very important. You have to persist. Whatever you think your child needs to get ahead, you have to persist. So being a very strong advocate for your child is very important, either in school and also

Partnering with a social worker for your child is very important because the social worker will navigate you through the system and tell you what is missing in your child's care. Getting a social worker is very important. The downside is his parent juggling work and taking care of other kids with attending to this child who has challenges, who has other intellectual challenges or physical challenges. That is actually the problem.

A lot of parents are juggling between siblings, work, and of course taking this child who has either intellectual challenges or physical challenges to program. So it becomes overwhelming for the parents to do all these things. So that's why it's good to partner with a social worker and partner with schools. Schools are a very good resource and they can help as well. Schools are a very good resource. Sometimes parents

that play what schools can do. Schools are very good resource for parents and to navigate through all these things. And of course, accommodate special accommodation for a child, kids who are in school, who are in school aged children, adolescents. They can have special accommodation like the 504 plane that give them accommodations to have extra time to do their work, to have a very quiet room to do their work and to help them in whatever they can do to navigate or to circumvent through their challenges as they do their work. So, 504 plan is very important. And of course, the individualized education plan is also important for some kids too. So, parents should explore that as well and ask these questions to the school and to their social worker. And of course, the speech generating device. I'm beginning to see that parents are

also asking for augmentative and alternative communication devices. I think that's a good thing. These augmentative and alternative communication devices, I think is a very good thing. Parents are beginning to be aware of that and asking for these devices, these speech generating devices, because this gives a kid with autism, for example, the capacity to communicate, to communicate with people around them. And when a child

is able to communicate. That confidence that they're able to communicate and share their thoughts usually affect all other areas of development. It augments other areas of development. A child who is able to communicate through a speech-generating device will be happy. Somebody understands me. I can share my thoughts. And that's usually is positive to other areas of development like moving around.

happiness, socialization, talking, and cognitive development. think communication, however simple, however rudimentary, which far exceeds what a child could do at the moment, would or usually has a potential to add to child's social-emotional capacity. A very good advocate for this speech-generating device is the fact that

I've advocated for a couple of kids whose parents come and ask me to do so, advocating for speech generating devices. I think it's a very good way to have kids reach out to people around them and in whatever way they find possible. And that interaction, that interaction that is afforded by speech generating device could blow them into other areas of development like social, emotional, even model development because a child who is able to communicate is happy. It's happy to share their thoughts. It would generally enhance child's capacity to develop and to be a good member of the society. I think speech generating device is a very good thing and parents are beginning to take advantage of that because when a child is able to communicate

When a child's communication capacity is increased, however, mini-skills, however small, that enhanced communication will trigger other areas of development, social, emotional, and cascade into cognitive development and awareness of the environment. Thank you so much for

Listening, know this is a very long podcast, but I think this is very important to advocate for children with disabilities. Share with parents what is out there and what is possible for their kids. Every child is different. Not every child would need all these services enumerated in this podcast, but it kind of broadens out in general child what is out there, what parents could ask for, what parents could advocate for and

depending on the need of the children and how parents could go around doing that with the help of their pediatricians and school and social work they have. Thank you so much.