THE CHALLENGING PATIENTS MIMI (Trey’s mother): He has ripped one doctor’s pocket off his shirt. (Sound up: Trey yelling) MIMI: I hear him now, oh my goodness...he’s mad.... Music cue Sound up: Lee Clinic or Trey’s appt DR. MATT: People with intellectual disabilities have a very difficult time accessing good quality healthcare Sound up: Lee Clinic or Trey’s appt DR. HENRY: Our professions have turned their back on them in many cases... DR. HENRY: It’s not uncommon to hear a parent or guardian say, the last time we went to a dental office or a medical office we were told: “get your son or daughter out of here and don’t ever bring them back.” FRAN (Danny’s mother): Well, recently an ambulance refused to transport him to the hospital because of his autism. He was transported to the hospital by a police officer DR. MATT: : we have generations of physicians and dentists who have been trained and that training didn’t include taking care of adults with developmental disabilities...so doctors are uncomfortable treating patients that they don’t necessarily understand CARD 1: In June of 2014, a father and son team opened the Lee Clinic in Louisville, Kentucky. CARD 2: It’s the nation’s first clinic devoted to the medical, dental, psychiatric and therapeutic needs of people with intellectual and developmental disabilities. DR. MATT: All of our clinicians here have exceptional expertise and experience focused on this population. CARD 3: The majority (ck) of their patients/clients are non-verbal or very low-functioning. Many (ck) have severe behavioral problems. (need to tweak.) Sound up: Inside Mimi and Trey’s house as they prepare MIMI: Due to Trey’s autism, he’s an odd little fellow. MIMI: Trey was actually a joy until he hit puberty, (gets teary) I’m sorry...he, at about the age of 14 he became just extremely self abusive Sound up: Mimi getting Trey into the van MIMI: It kills me to have to restrain him and do the things I have to do to keep him safe. MIMI: it’s amazing how many doctors..I have sat there with the phonebook and literally called one after another to try to get him into a certain specialist or you name it and the answer I love the most is we are not taking any new Medicaid patients when they hear he is challenged, they don’t want that Sound up: Mimi and Trey outside Lee Clinic MIMI: To have all these services under one roof has been a dream that we have long waited for, way over due. OR MIMI: The therapies that he’s now getting that he’s not been able to receive in years due to his behavior challenges Sound up: detail shots inside clinic MIMI: When you go into a waiting room with someone as challenging as Trey with the behaviors and everyone’s staring. Sound up: Trey’s appt DR. MATT: We have a term for that, we call it waiting room syndrome and it’s not a syndrome that he patients have it’s a syndrome that the doctors have, and it’s the fear that the patient with the disability is going to be in their waiting room and have behavior or scare the other clients or somehow make it so that the other patients are uncomfortable in that waiting room. DR. MATT: as you enter the lobby of the clinic what you might see is for example, its a wide open space. One of the reasons for this is a lot of our patients have autism for example and people with autism tend to like to have a little more space DR. MATT: Our waiting room furniture is comfortable, we don’t used those hard plastic chairs, we use cushions and sometimes they are also made out of durable material that’s easy to clean because sometimes our patients have accidents in the lobby and we need to be able to deal with that DR. HENRY: and additionally it takes more time. we’re living in a time now that a doctor may be in the room with for five minutes if your lucky. And you just can’t do that with this population Sound up on Danny in waiting room FRAN: when you have a child like this who can’t communicate and has complex issues and has challenging behaviors and is taking a long list of psychiatric meds, you can’t go around to typical doctors because they’re not really familiar with autism BILL (Danny’s father): Danny also has SIB (ph) or self injurious behavior where he hits himself and he’s had a cauliflower ear on this side. He had surgeries last summer. we’ve had, we’ve had that sort of behavior for years, striking himself, yeah. FRAN: You can see the hair loss on this side. BILL: And so we thankfully got referred here and we started addressing what all the physical or dental problems that might contribute to this which we’re still dealing with DR. MATT: diagnostic overshadowing is something that we see in this field and essentially what diagnostic overshadowing is is when you attribute a behavior to the disability rather than looking for an underlying cause - so they’ll start to medicate the behavior. DR. MATT: : . In this population, one of the things that we know is that often times there is not underlying physical diagnosis that is actually causing pain or discomfort and because sometimes our patients have limited verbal abilities their method of communicating to us is that behavior, Sometimes people have dental pain for example, and the physical self injurious might be the person actually doing damage to this, taping on the part that hurts HENRY: funding is also a problem when a patient with an intellectual disability reaches the age of 18 in the United States they fall off a cliff, a funding cliff. Often times public assistance, medical assistance services and programs just kind of dry up and funding dries up MIMI: I clean houses for a living because in the past when I’ve tried to do anything else, punch a clock so to speak, it never works out because Trey could be having a bad day. They need me to pick him up from the center.... so that’s why I’ve cleaned houses most of his 33 years..I haven’t been on vacation in at least ten years Sound up: End of Trey’s appointment, he is put in restraints in wheelchair MIMI: I would really like to find placement for him while I’m still young enough to oversee it and be a part of it. He’s been on the waiting list at one facility since he was 18 years old.. now but I don’t know if we’ll be lucky enough in my lifetime to see him get in there... MATT: We solve the problem of healthcare here at this clinic but for the parents, healthcare is just one piece of their life. Everything that they do is more complicated.. Sound up: That’s my boy! That’s my boy! FINAL CARDS: CARD 1: In 20xx The American Medical Association and the American Dental Association recognized people with intellectual disability as a medically underserved population. CARD 2: Currently, the Lee clinic serves as a teaching facility for XX healthcare students. Dr. Holder and Dr. Hood hope that other states will use their clinic as a model for similar facilities