A State Residential Facility For The Developmentally Disabled: Fill & Download for Free

Here’s the answer I posted to a similar question:I can answer this one because it’s the situation I have with my son, who is now 25. He suffered a brain injury shortly after he was born and it became apparent pretty quickly that he was going to be seriously disabled, physically and cognitively. When he “aged out” of the public education system, at 22, we had a dilemma. There was no longer anything to occupy him with his days, and his dad and I were getting too old to continue providing daily care. We had researched it, so we knew there are facilities that provide care 24/7 and these are paid for by Medicaid, supplemented by Social Security. The parent must go to court to obtain legal guardianship for the adult child, then apply on the child’s behalf for Medicaid and Social security. There is no “spend-down” requirement for Medicaid in such a situation because parents are not required legally to support a child after age 18.The care facilities available to the developmentally disabled range from standard nursing homes to specialized care/living facilities. The terrible truth, however, is there are not enough vacancies in these settings to accommodate all the people needing residential care. In my home state, Illinois, I’m told there's something like 25,000 individuals waiting for an available vacancy in residential care settings. Their legal guardians must apply to these places, then go on a waiting list until a vacancy opens. Vacancies become available when a resident dies, or moves to another facility, for whatever reason. This means people are waiting months or (more likely) years for a placement. Misericordia, the most sought-after residential program in Illinois, I’ve heard, isn't even taking any more names because their wait-list is so long. Supposedly, people at the far end of the list may be waiting 20 years for a vacancy. The parents or legal guardians may die before their disabled dependent gets a home. In fact, it’s common, sadly. In such cases, the State steps in, assigns the dependent a public guardian and they move the person into any nursing home accepting Medicaid that has a bed open. I’ve heard of some people being placed in homes that are hundreds of miles from where they were, meaning any family or friends still living might never visit. These are really tragic situations.OTOH, people who are lucky get their adult child placed somewhere of their choosing while they are alive, giving them an opportunity to find higher-quality facilities for their loved ones and be present for their child’s transition into the care setting. This makes a huge difference.We were lucky. We knew someone who pulled some strings for us and we found a placement for our son not long after he completed his public education. Things started off pretty good, but their were some personnel changes and the quality of the facility suffered for it. We weren't satisfied with the care he was getting, so we put in applications to some other facilities and, just recently, we heard from one that offered us a vacancy. He’s been in placement about three years, so we were very lucky. We moved him in late October and it’s been going well. We’re pleased and he seems very happy. I wish everyone with a disabled loved one were as lucky.I wish the general public was more aware of the plight of disabled adults and their anxious families. I think if they did, more would be more sympathetic and less begrudging of taxpayers’ money that funds these services. I’ve heard some comments from people, criticizing the families of the disabled for putting the person on Public Aid and turning them over to strangers to care for them. Very few of these families have the resources necessary to pay for these services, and even the most devoted and loving parents can't provide the demanding challenge of day-to-day care indefinitely. Our bodies grow old and, ultimately, we all die. My husband and I are nearly 40 years older than our son. Despite his disability, he’s in excellent health and there's a good chance he will outlive us. We’re not foisting him on to public-funded caregivers because we're lazy or selfish. Not only can't we remain daily caregivers to him, but we want him to be comfortably situated and feeling secure in his life while we are still here. We won't have to be worried sick over what will happen to him after we die.The job of direct-care for the disabled is a hard one, and the pay to such heroes is appalling. In Illinois, the salary of direct-care-providers in 24/7 settings is a paltry $9.60 per hour! The facilities have no ability to pay their staff more, as this is what state legislators have budgeted for these jobs. Administrators don't have the dollars to increase their DCPs pay. These hard-working employees haven't had a pay increase since 2006, if you can imagine that. It's obscene. Bruce Rauner, our governor who happens to be a billionaire with no disabled family members, has vetoed all proposals for greater budgeting for these services, and, additionally, he wants legislators to approve his proposed budget that would cut funds to agencies like the one operating my son’s residence by a shocking 12%. We saw a statement issued by the administrators of the facility where our son was living previously, informing us this would slash over 800 million dollars from their operating budget. I probably don't need to tell you this would be catastrophic for these agencies and their clients. Legislators have been deadlocked well over a year in a stalemate over Illinois’ state budget. The stalemate has wreaked havoc on a wide scale with public-funded services, and there’s no light at the end of the tunnel. I lie awake in bed some nights worrying over all this, wondering how it will turn out and if some miracle will come along to rescue this miserable situation.Now there's a new presidential administration coming to the U.S., and louder and louder rumblings are being heard of eliminating Medicaid, Social Security and Medicare from many public servants supporting the president-elect. You can probably guess I’m scared to death over what will happen.This is no doubt way more than you asked or wanted to know, but I thank you for asking the question, giving me the opportunity to bring to light in a public forum the hardships families like mine must endure. The public needs to know about this.

This content may be upsetting to some readers, but this is my candid outline of what it was like working in a group home (or residential care facility) for the developmentally disabled, and you know me- I won't be holding anything back.As far as I know, the same basic human rights are extended to the developmentally disabled by California law today, as they were when I was employed decades ago.Long ago, back when I was a care provider, the courts had officially judged these individuals capable of making their own decisions when it came to personal relationships, religious choices, clothing, recreation and education; the law not only protected the developmentally disabled, and allowed them a more independent lifestyle, but it also protected their dignity, as is the right of every human being.Caretakers are merely there to gently guide and protect, help with medications and assist with the daily tasks the residents would otherwise find challenging on their own.We are guests in their home.This is my story…I worked in a group home for developmentally disabled adults as a day job, when I first struck out on my own as a teenager.I didn't have any previous medical training, but I'm sure that my empathy for the residents, seeing that a relative with Down Syndrome was living in a facility run by the same company, helped me secure the position at that time.And I was grateful for the work.My first day on the job, I walked in, and watched a nurse changing a grown man's poopy diaper!The nurse had his skinny, withered, veiny legs locked together, gripped in one hand, high in the air, just like you would an infant’s. Except, this was a grown man. With severe deformities.Pencil-thin legs, and backwards-facing feet (with two or three toes on each) and with long, hairy black sprouts of pubic hair at his crotch above huge bulbous testicles. His fully grown penis against those tiny, fragile legs made for quite the shocking sight! It was completely disturbing to me at the time. Sorry to be graphic, but I was wholly unprepared for this disturbing sight, when I first entered the facility.I thought we were just going to draw pictures and play games, do a little light housework.Not this!I was still very young, innocent and naïve. I was bashful about nudity and had never looked at a naked guy that closely in the daylight. It was a hard slap of reality, that first day on the job.The nurse had both skinny legs clasped together in one hand, hefted high in the air, and was wiping his shitty butt, right out there in the open! That was too much for me. The smell hit me first. Then the sight. It shocked me so much, I fainted dead away! I came to in a recliner, very embarrassed, being administered juice by a nurse. Somehow, I willed myself to get right back up; I learned how to change diapers, myself, by the end of the day. Because I had seen the look of shame in that man's eyes, the man having his diaper changed. I had hurt his feelings. That hurt me, too. I wanted to show him it was no big deal. That we could move past our mutual embarrassment. And we did. We became buddies.His name was Chuck.I spent my days from 5 a.m. onwards, gently waking the residents, changing their wet diapers, showering them, and helping them choose their outfits for the day.That their clothes didn't match, or may have been inappropriate for the weather, was of no concern to me. They were adults, and we were taught that they were supposed to be able to make these decisions for themselves. I did offer gentle suggestions, however. If there was snow on the ground outside, and they chose to wear shorts and a tank top that day, I would steer them in the right direction, “wouldn't this be a cute sweater to wear today?”That usually worked. If they insisted on wearing shorts, then we just made certain they carried extra blankets, jackets, and a change of clothes with them. They still wore the shorts if they wanted to, though. Their choice.Some of these adults were very low-functioning residents, and very few had the ability of speech.We sent them off to a day program, “school”, where they spent all day doing projects to enhance their life skills. I'm not certain what went on at their community outreach program, but it was a remedial education program for developmentally disabled adults and lasted six hours, daily, on weekdays.During those six hours, the staff spent their time cleaning house, changing beds, charting, shopping for groceries, preparing activities and getting ready for the residents to come home in the late afternoon.I didn't think the same 'ol routine was healthy, nor was being confined to the house all the time. So, as soon as “my people” would arrive home, I'd load them into the van for fun time! Enrichment activities. I would whisk them off to the mall for ice cream, or to the pond to feed the ducks, or to the airport to watch the airplanes take off. Simple, everyday things were fun to them. Everything was a thrill to these people, and in their joy, it brought joy to me. They may not have been able to speak, but every single one of them could smile!That's communication.That brought tears to my eyes.I encountered several emergency scares during my work shifts; I always felt I had to be on my toes while working there. Some residents had seizures which required an ambulance, and once, while I was cooking a meal, a resident reached out and tipped a hot pot of water onto her arm! Luckily, it wasn't boiling yet. Her screams were alarming, however. She howled and cried for well over an hour in a panicked state, even after we cooled the burn under cool water, and dressed it properly after applying ointment. The next day, it wasn't even red, but she insisted we continue to reapply the ointment and re-dress the non-existent “wound” for the next three months. She loved the extra attention.From then on, Janice hated me. She was a large woman and far outweighed me. She was the only resident I didn't like. She pinched me and pulled my hair out in painful handfuls whenever I had my back turned. She would throw her used, bloody menstrual pads at me, and if I hadn't been quick on my feet (and her reflexes quite slow) they would have made a disgusting impact on me- their intended target. I avoided her whenever I was in the house, and charted her behavior towards me in incident reports so I never had to work directly with her.She, of course, couldn't help her behavior. She was disabled. I knew that. I still didn't like her. I didn't feel that her disability justified that I needed to take her abuse. I didn't feel I needed to come away from work physically bruised, scratched, or with bald places on my scalp from where she pulled my hair out. The other staff members didn't mind covering Janice for me. They knew she was a handful.Janice had a habit of stealing food. She had a food eating disorder, Pica, which required us to lock every cabinet and refrigerator, with toddler-proof locks, or else she would eat everything she could get her hands on, including things which weren't edible.One day, I caught her just in the nick of time, as she was trying to swallow an unused tampon which she had stolen from a staff member's carelessly laid purse. I caught the string, just as it was disappearing down her throat, slurping it down like a strand of spaghetti! When I reached into her mouth and pulled it back out, she actually grabbed on to it, in a tug-of-war, and tried with all her might to stuff it back into her mouth and gobble it down! She bit down, as I pulled, and got some of the cotton off the end, which she swallowed down in one big, disgusting gulp. Luckily, I had the string with most of the tampon intact in my hand. I ran to get away from her as she chased me down the hallway to get it back. I yelled for assistance, and a male nurse blocked her path. My heart was beating in my throat, for fear the super-absorbant cotton could have expanded in her airway and suffocated her! I believe the doctor ordered fiber, and we watched her closely over the next few days. I can't remember if that incident ended in a visit to the hospital like the time she swallowed the coins.One day, I was showering Chuck, the resident I met that first day while having his diaper changed. His legs were useless, so he sat in a wheelchair his entire life. He used a wheeled plastic potty chair in the shower, too. I was singing a silly song to him as I washed him; he giggled and twisted in the soapy shower chair, and then he accidentally slipped off.I caught him, but I'm small. His wet body was slippery with soap, and heavy. I was losing my grip. He slowly slid down my body as I eased him to the shower floor, gently, but I could see the terror in his eyes as he lay, panting with fear on the floor. I turned off the water, and I apologized to him. He shivered from the cold, but was otherwise uninjured.I was, however. I was hurting pretty badly.I'd wrenched my back trying to hold his complete weight against me so he wouldn't fall to the ground and become injured.I was in tears, not only from the pain in my torn back, but also because I was so sorry that I had to leave him there, his twisted, naked body curled on the cold, wet tile floor like that. I limped off to get help! I found a male nurse who had the strength to lift Chuck back into the seat. The nurse lifted the poor, naked man up effortlessly, plopped him down like a bag of apples onto the plastic potty chair, and began drying him off roughly. He dismissed me, brusquely. I had to go to the emergency room, as was protocol for injuries on the job. I was abandoning the sole nurse on shift. I don't blame him for being angry. Both, for leaving him on duty, solo, and also for leaving Chuck on the cold shower floor. Chuck jumped to my defense. He couldn't speak, but he could communicate. He shook his head and pointed at me. He didn't want the nurse to dry him. He was being too rough. He preferred my gentle touch, even though I'd just let him slip out of my grasp. He still was willing to put all his trust in me! Chuck had instantly forgiven me for letting him slip, but it took weeks before the nurses did.Cheri was also in a wheelchair, and a favorite among the staff. She was higher functioning than most the other residents. She was delightful. She had a great sense of humor. I liked to spend time doing art projects with her. She repeated the phrase “my baby, my baby” over and over again. I would bring her a baby doll whenever she did, and a sad look would always cross her face.She wore her heart on her sleeve.It wasn't until I'd worked at the facility for a good four months before her horrifying story was revealed, in all its sick, twisted details.Cheri had been transferred to the residence, from another group facility, because she had been raped and impregnated by a former staff member!Her parents were Catholic. Abortion was out of the question. She had the baby. It was born perfectly healthy, but taken from her shortly after birth. Her parents were raising it. It happened; not in the 1920's when you'd expect such barbaric practices to occur, but in the late 80's in California!Not once did I ever see that poor young woman's parents come to visit her, or even bring her baby, which she pined for day after day, and which filled her days with despair, even though we did our best to give her a life, filled with color and enrichment.Nary a single day.She had been dropped off, raped, forced to have a baby which was torn from her arms shortly after birth, and then abandoned, once again, with strangers in a new facility.My heart breaks writing these words.Since all the female residents were on birth control pills, I don't know how they got around the religion thing with Cheri. Or if her parents had learned their lesson. Or if someone had talked Cheri into signing her own paperwork to authorize treatment for her own meds, but she was never going to become pregnant again.She took the daily allotment of birth control pills like every other female resident at the facility. Even though it was her fantasy to one day become a mother again. Though she may not have understood that she was incapable of being a fit mother to a real-life infant, instead of just a surrogate to a plastic doll.We provided her with a lot of dolls, but none replaced that ache in her heart to hold a real one, a real infant. She spent most days feeding the dolls, diapering, and cooing to them. She swaddled them and cuddled them. She sang to them as she rocked them gently. She ran over their little heads with her wheelchair. It was heartbreaking, every last bit of her story.I think about her a lot to this day.Jacky cracked me up. He was one of the few residents who actually had family members who visited him regularly, and it really made a difference in his progress and demeanor. He was not only socially outgoing, he was eternally cheerful and upbeat.Jacky had Elephant Man's disease, or Neurofibromatosis. His head was especially misshapen, as were some of his limbs, and at first, the sight was disturbing. But Jacky was such a delightful character you soon forgot the deformities, and reveled in his capabilities! Jackie additionally suffered from developmental disabilities. He wasn't the genius we see in the model, “John” Joseph Merrick, Elephant Man genius, but someone with intellectual challenges, suffering from the same disease.His skull was bent, but his personality was stellar. It made you quickly forget all that other stuff.He gave us living room concerts on his ukulele. He made sure we were all sitting in the family room, side-by-side, staff and residents alike, and he would stand in front of us, while strumming and singing at the top of his lungs. He'd perform all the latest songs he'd picked up on the radio, or parts of them, whatever he could remember. Jacky's concerts were delightful! Entertaining. We looked forward to them. We would always give him standing ovations, and the lady residents would swoon. Yes, Jacky was a “Ladies man” and the chicks were always fighting over him, vying for his attention.There were quite a few awkward moments concerning Jacky which needed staff intervention. A gentle nudge, here and there, when I caught one lady resident or another admintering oral pleasures to Jacky. Right there, out in the open, on the very same sofa we used as a concert arena! I would ask them to move into his bedroom and close the door for privacy. I would explain that what they were doing was a private, “adult” moment. He would awkwardly waddle, pants around his ankles, into his room with a full erection, lady suitor in tow, penis in hand, and they would close the door, as instructed. I'd hear loud moaning coming from the room. They never understood the concept of privacy. Okay. The staff would drink coffee and giggle. The male staff members were envious that Jacky got more blow-jobs than they did.As a reminder: Every female client in our care were receiving proper birth control and were consenting adults. The law said that what they were doing was fine, and the staff couldn't interfere, unless it was a forced situation. Which it wasn't. Jacky was a “Rock Star” and the ladies fought over him. Jacky was a very happy man. Nothing the residents were doing was our business. Nothing the residents were doing was wrong.We were guests in their home.It was a sad day when I moved away to go to school. Management told me to say my goodbyes. I would not be allowed to come back again. They said it upset the residents to lose their friends on staff, and once they'd forgotten about them, it was best left that way.They told me that in their experience, in the past, previous staff had come to visit, briefly, but then they left again and moved on, and led their lives, as is the natural course of things. But to the residents, to have them reappear in their lives again, for a brief, selfish moment, only to vanish forever, was unstable and heartbreaking for them.I understood.I would never be allowed to see my buddies again.I spent that last tearful day taking photos and doing art projects with my buddies.The staff let me play and spend time with “my people” instead of attending to work duties.I hugged Chuck. I looked deeply into his eyes. I explained I was leaving, and saw a look of recognition there. I always felt there were deep waters flowing behind those blue pools. Chuck's eyes betrayed what some people term “mental retardation” because, whenever I spoke with him, even though he lacked the ability to speak, I knew he truly understood, in a deep and philosophical way. He gazed out the window and cried. That's the last scene I hold in my memory of Chuck. Him, sitting in his wheelchair next to the picture window with the golden afternoon sunshine falling in behind, a snapshot of his misshapen body bent in sorrow, and with a swirling halo of dust particles to keep him company in my absence.I spent time drawing with Cheri. We drew pictures of babies and sunshine and daisies, and I taught her to draw a broken heart, cut in two. Two halves of a whole. I explained how it felt when somebody was sad, as I was drawing the heart. I told her that was how I felt to be leaving and that I'd miss her. She picked up a marker, a green one, and drew a pretty good representation of a broken heart and said, “my baby” and I got big tears in my eyes, hugged her.Yeah, Cheri. Just like that.Jacky was hiding in his room the whole day. He knew. He was upset. It was the end of my shift when I finally broke protocol and opened his door without permission. He yelled at me to leave him alone. He was laying on his bed with his face on his pillow, crying. He didn't want me to see him that way. I went and sat on the edge of his bed, anyway. “I have something for you, Jacky” I said, and his face lifted up from the wet pillow out of curiosity. I handed him an old, beat-up Fender electric guitar I'd gotten at a yard sale, along with a tiny amp. “This is my goodbye present for my favorite rock star, Jacky.” His eyes went wide, as he grabbed me in a bear hug so tight I thought my ribs would crack. He jumped up from the bed, grabbing the guitar, and started dancing around the room, singing rock and roll songs, banging on the strings, lost in his own little world. The staff gathered at the doorway, and I asked for one last hug from Jacky, but he was oblivious to me then, lost in the thrill of the new guitar. “Say goodbye to Wendi, Jacky” the staff urged as I stood to leave, but he didn't even acknowledge me.Holding back tears, I patted him on the back, wished him well and quickly walked out the door.Just as I was getting into my car I turned around and there was big Janice, smiling at me. Oh no! It was all going so well, I thought to myself. I believed she was about to accost me, pinch me or pull my hair one last time, but instead, she leaned down and pulled me into a gentle, warm hug.That floored me.I drove away in tears, looking back at her in my rearview mirror, waving goodbye. Waving and waving until I disappeared around the corner.Goodbye, my friends. Goodbye.

I can answer this one because it’s the situation I have with my son, who is now 25. He suffered a brain injury shortly after he was born and it became apparent pretty quickly that he was going to be seriously disabled, physically and cognitively. When he “aged out” of the public education system, at 22, we had a dilemma. There was no longer anything to occupy him with his days, and his dad and I were getting too old to continue providing daily care. We had researched it, so we knew there are facilities that provide care 24/7 and these are paid for by Medicaid, supplemented by Social Security. The parent must go to court to obtain legal guardianship for the adult child, then apply on the child’s behalf for Medicaid and Social security. There is no “spend-down” requirement for Medicaid in such a situation because parents are not required legally to support a child after age 18.The care facilities available to the developmentally disabled range from standard nursing homes to specialized care/living facilities. The terrible truth, however, is there are not enough vacancies in these settings to accommodate all the people needing residential care. In my home state, Illinois, I’m told there's something like 25,000 individuals waiting for an available vacancy in residential care settings. Their legal guardians must apply to these places, then go on a waiting list until a vacancy opens. Vacancies become available when a resident dies, or moves to another facility, for whatever reason. This means people are waiting months or (more likely) years for a placement. Misericordia, the most sought-after residential program in Illinois, I’ve heard, isn't even taking any more names because their wait-list is so long. Supposedly, people at the far end of the list may be waiting 20 years for a vacancy. The parents or legal guardians may die before their disabled dependent gets a home. In fact, it’s common, sadly. In such cases, the State steps in, assigns the dependent a public guardian and they move the person into any nursing home accepting Medicaid that has a bed open. I’ve heard of some people being placed in homes that are hundreds of miles from where they were, meaning any family or friends still living might never visit. These are really tragic situations.OTOH, people who are lucky get their adult child placed somewhere of their choosing while they are alive, giving them an opportunity to find higher-quality facilities for their loved ones and be present for their child’s transition into the care setting. This makes a huge difference.We were lucky. We knew someone who pulled some strings for us and we found a placement for our son not long after he completed his public education. Things started off pretty good, but their were some personnel changes and the quality of the facility suffered for it. We weren't satisfied with the care he was getting, so we put in applications to some other facilities and, just recently, we heard from one that offered us a vacancy. He’s been in placement about three years, so we were very lucky. We moved him in late October and it’s been going well. We’re pleased and he seems very happy. I wish everyone with a disabled loved one were as lucky.I wish the general public was more aware of the plight of disabled adults and their anxious families. I think if they did, more would be more sympathetic and less begrudging of taxpayers’ money that funds these services. I’ve heard some comments from people, criticizing the families of the disabled for putting the person on Public Aid and turning them over to strangers to care for them. Very few of these families have the resources necessary to pay for these services, and even the most devoted and loving parents can't provide the demanding challenge of day-to-day care indefinitely. Our bodies grow old and, ultimately, we all die. My husband and I are nearly 40 years older than our son. Despite his disability, he’s in excellent health and there's a good chance he will outlive us. We’re not foisting him on to public-funded caregivers because we're lazy or selfish. Not only can't we remain daily caregivers to him, but we want him to be comfortably situated and feeling secure in his life while we are still here. We won't have to be worried sick over what will happen to him after we die.The job of direct-care for the disabled is a hard one, and the pay to such heroes is appalling. In Illinois, the salary of direct-care-providers in 24/7 settings is a paltry $9.60 per hour! The facilities have no ability to pay their staff more, as this is what state legislators have budgeted for these jobs. Administrators don't have the dollars to increase their DCPs pay. These hard-working employees haven't had a pay increase since 2006, if you can imagine that. It's obscene. Bruce Rauner, our governor who happens to be a billionaire with no disabled family members, has vetoed all proposals for greater budgeting for these services, and, additionally, he wants legislators to approve his proposed budget that would cut funds to agencies like the one operating my son’s residence by a shocking 12%. We saw a statement issued by the administrators of the facility where our son was living previously, informing us this would slash over 800 million dollars from their operating budget. I probably don't need to tell you this would be catastrophic for these agencies and their clients. Legislators have been deadlocked well over a year in a stalemate over Illinois’ state budget. The stalemate has wreaked havoc on a wide scale with public-funded services, and there’s no light at the end of the tunnel. I lie awake in bed some nights worrying over all this, wondering how it will turn out and if some miracle will come along to rescue this miserable situation.Now there's a new presidential administration coming to the U.S., and louder and louder rumblings are being heard of eliminating Medicaid, Social Security and Medicare from many public servants supporting the president-elect. You can probably guess I’m scared to death over what will happen.This is no doubt way more than you asked or wanted to know, but I thank you for asking the question, giving me the opportunity to bring to light in a public forum the hardships families like mine must endure. The public needs to know about this..