# data[].attributes.headline
American Association on Intellectual and Developmental Disabilities

# data[].attributes.subject
American Association on Intellectual and Developmental Disabilities

# data[].attributes.attachment_link.description
Bookstore | Journals | Webinars | Career Center | Contact Us | Annual Conference

# data[].attributes.body
Employment for intellectual disabilities

# data[].attributes.attachment_link.readable_text
/ CBS News

In the heart of downtown Clemson, South Carolina, the Shepherd Hotel is a community hub buzzing with locals and visitors. Like most hotels, the staff is what makes the difference. But here, the staff also makes it unique.

Around 30% of the staff have an intellectual disability. Workers make between $13 and $18 per hour including tips - far above the federal minimum wage of $7.25 per hour. Nationwide, 16% of people with an intellectually disability are employed, according to a ThinkWork survey.

The Shepherd's co-founder, Rick Hayduk, brought his vision of employing intellectually disabled people to life in part because two of his four children have Down syndrome.

"If we do our job right, someone leaves here inspired," Hayduk said.

The hotel partnered with a program at nearby Clemson University called ClemsonLIFE. Students, including Hayduk's daughter Jamison, not only take college courses, they also learn skills to help them live and work independently.

The program's participants learn everything from time management and hygiene to banking and budgeting, according to program director Erica Walters. Nearly all of the graduates who have been through the program are employed. Plans are underway to open two similar hotels in South Carolina next year.

"We want to grow for the sake of inspiration and change," Hayduk said.

The program is changing lives.

Alex Eveland, a recent graduate from ClemsonLIFE, is now employed as a server at the Shepherd Hotel. Eveland has a developmental disability, and as a child, doctors thought he would never walk or talk. Now he is working toward a hospitality certification and has dreams of opening his own restaurant one day.

"I have no time to have a bad day in life, because I want to tell people, people could do anything in life," Eveland said.
More

Meg Oliver

© 2024 CBS Interactive Inc. All Rights Reserved.

# data[].attributes.attachment_link.title
Recent graduates with intellectual disabilities find employment at South Carolina hotel

# data[].attributes.attachment_link.description
The Shepherd Hotel partners with a program at nearby Clemson University that helps students with intellectual disabilities live and work independently.

# data[].attributes.attachment_link.description
When you support The Arc of East Central Iowa you support programs, services, and advocacy that in turn help build better lives for individuals with intellectual and developmental disabilities, their families, and our community. Learn more about the different ways to make an impact by exploring ways to give.

# data[].attributes.body
Susans personal story

# data[].attributes.attachment_link.readable_text
Meet Susan

Susan is a woman who is dually diagnosed with mental illness and an intellectual disability. Susan lived with her parents until she was in her 30's. After both of her parents passed away she lived with her brother and his family for a period of time. The level of care that Susan required was more than her brother's family was able to provide. A neighbor took an interest in Susan and after a time, invited her to become a member of their family. The neighbor researched the services provided to individuals with disabilities, made application for Susan to enter the Intellectual/Developmental Disabilities Waiver program, and applied to become a Specialized Family Care Provider. Susan lived in her original Specialized Family Care home for seven years until the provider was no longer able to meet Susan's needs. After a short hospitalization, Susan transitioned to her current Specialized Family Care home where she has now lived for over five years.

For Susan to maintain optimal health and well-being, monitoring and supervision is required. Susan receives help with her general health, medications, doctor appointments, diet, mood, and activities of daily living, like hygiene, exercise, and social activities from her Specialized Family Care Provider.

Susan has her own bedroom which she has decorated with Elvis, horses, and her jewelry collection. Besides attending a day program five days per week, Susan has a support person outside the family who takes her on outings to events, movies, and shopping for snacks, collectibles, jewelry and makeup.

Susan is wonderfully caring, thoughtful, and helpful. She has a good sense of humor and enjoys a good story. With the efforts and nurturing of her Specialized Family Care Provider and the other people who provide supports, Susan enjoys a happy, enriched, and stable life outside the confines of hospitals.

Meet Chris

Meet Chris. Chris is a young man with Down Syndrome, who has always lived at home with his mother and receives respite services through Specialized Family Care. When Chris was a young child in elementary school, he and his mother met his current respite provider, Anna, who was a volunteer in the school system at the time. After coming to know the family, Anna offered to have Chris stay with her and her family after school or on occasional weekends while his mother worked or needed down-time. Chris' mother agreed and what followed is an amazing story of two families joining together over almost 20 years to enrich a young man's life and two families with love, friendship and new experiences.

From the beginning, Anna, along with her husband and son, welcomed Chris as a member of their family. From an early age, Chris was especially drawn to Anna's young son, Gary, and the two boys became best friends from the start. They attended different schools after elementary school, but remained close throughout their younger years into adulthood. As kids, they played basketball, football, and video games together and Chris went to all of Gary's sporting events. When Gary left for college, Chris attended several of his college games and even became friends with some of Gary's teammates.

Chris enjoys going boating, hiking, camping, and to festivals with Anna and her family. Despite only being with Anna on a respite-basis, Chris has become such an important part of the family that he is expected by extended family members to attend family reunions and cookouts. He is so much a part of the family that now, as adults, Gary considers him a brother and goes to pick him up so the two can spend time together. The two are so close, in fact, that Chris stood proudly as the best man to Gary and his fiancé as they exchanged their wedding vows.

The experiences and friendships shared have been a rewarding adventure for both families. Chris has ended up with two families with many layers of love and support. Anna and Chris' mother have had the pleasure of watching him grow into a wonderful young man with so much to offer, and Anna's son and his new wife are now working to become Specialized Family Care providers so they can enrich the lives of others the way Chris has enriched theirs.

Meet Patrick

Meet Patrick. Patrick has autism and an intellectual disability. Until 2008, Patrick lived with his biological mother in Texas. She worked hard to ensure that Patrick had every opportunity to achieve his fullest potential. She socialized Patrick, taught him manners, and gave him basic skills. Sadly, after so many years of her life dedicated to the care and growth of her son, Patrick's mother was tragically killed in an automobile accident. Patrick's grandparents brought him to West Virginia following their daughter's untimely death. While they were in good health, they were elderly and began looking for housing and care options that would be in Patrick's best interest. His aunt became his legal guardian and the entire family came together to make sure he had a safe and happy place to live with caregivers who were specially trained to care for him based on his disability.

Patrick was placed in the Specialized Family Care home of Bob and Cathy Ross in 2008. In the Ross home, Patrick is treated as a member of their family and he is very close to Bob's grown children and their families. They are very involved with their church and play in a local Christian music group. Patrick enjoys going to church with them and attending their practices- sometimes he even joins in the music. Patrick just returned from a two week vacation at Dollywood where he had a wonderful time. This was his second trip to that park.

The Ross's have ensured that his natural family has an open invitation to visit with Patrick at any time. His grandparents and other family members visit him regularly at his new home. He has overnight visits with his family members in their homes, has opportunities to go out for a bite to eat with them, and sometimes they just sit with him on the Ross's porch. Patrick enjoys the best of both worlds. He has two families that love him very much and enjoy watching him continue to grow to his fullest potential, as his mother would have wished.

Meet Dale: Specialized Family Care in one Man's Story
By, Teresa McCourt, Interim Program Manager
Meet Dale. Based on an intellectual disability and developmental delays, Dale spent much of his childhood and adolescence in Weston State Hospital. Born to parents who lacked the capabilities to care for and parent Dale appropriately, Weston State was likely the best and perhaps only option for Dale's mother to make sure he was taken care of.

While the hospital did provide for Dale's basic needs, it was not an atmosphere that allowed Dale to flourish. Instead, its institutional setting and stark contrast to community life kept Dale from achieving his fullest life potential.

As a result of the Medley Consent Decree (Medley v. Ginsberg, 1981), Dale was released from Weston State Hospital upon its closure in 1994. He was initially placed in Adult Family Care with the Bailey family, which consisted of a husband and wife team with a son and daughter living at home. Based on Dale's specialized needs, the Bailey's were brought into the Specialized Family Care Program and Dale was transferred into our care. He has lived with the Bailey family since his re-entry into the community and has thrived in the home. He is considered a member of the family and is treated as a son to the Bailey's and a sibling to their children who are now grown and living independently.

Instead of a life inside the walls and gates of the hospital, Dale now enjoys working part time in a woodshop during the winter and for the forestry service in the spring and summer months. He also volunteers at a local charity clothing shop, and helps take care of the family property and pets. The family takes regular family beach vacations with Dale in attendance. He boats and camps regularly during the warmer months and is an avid fan of WVU Mountaineer sports and keeping up with weather predictions. He is strong, independent, and is growing more each day.

# data[].attributes.attachment_link.description
Susan is a woman who is dually diagnosed with mental illness and an intellectual disability. Susan lived with her parents until she was in her 30's. After both of her parents passed away she lived with her brother and his family for a period of time.

# data[].attributes.attachment_link.title
Georgia sets legal bar very high to shield intellectually disabled people from death penalty • Georgia Recorder

# data[].attributes.attachment_link.description
Nearly four decades ago, public outrage over the execution of Jerome Bowden, a man with an IQ of 65, spurred Georgia lawmakers to exempt people who are intellectually disabled from the death penalty. At the time, Georgia was the first state with the death penalty to ban the execution of intellectually disabled defendants – and […]

# data[].attributes.body
Students with disabilities often don't get the preparation and training needed to be ready to enter the workforce

# data[].attributes.attachment_link.title
Students With Disabilities Are Entitled To Job Training. Many Don’t Get It

# data[].attributes.attachment_link.description
There’s a half-billion-dollar federal program that is supposed to help students with disabilities get into the workforce when they leave high school, but most parents — and even some school officials — don’t know it exists. As a result, hundreds of thousands of students who could be getting help go without it. New Jersey had […]

# data[].attributes.body
Personal story about a student who has intellectual disabilities but was denied access to certain classes and books and his school treated him different and didn't challenge him.

# data[].attributes.attachment_link.title
My son has intellectual disabilities. He deserves a rich and challenging curriculum.

# data[].attributes.attachment_link.description
He is not developmentally 5 years old. He is a teenager with his own interests, experiences, and opinions.

# data[].attributes.attachment_link.readable_text
Since 1979, REM Iowa has provided quality services to adults and children with intellectual and developmental disabilities and other complex challenges. We also offer services for adults with brain injuries and provide a range of programs, including residential services and day and vocational programs. Our personalized approach maximizes each person's unique efforts to learn, grow and thrive in the communities they call home. REM Iowa is part of Sevita, previously The MENTOR Network, a national network of local health and human services providers offering an array of quality, community-based services across the country.

Looking for a job where you can make a difference? Check out our Careers page.

Are you a case manager, social worker or family member looking for community-based supports? Make a Referral to learn more about how REM Iowa can help.

We value the feedback of everyone we serve, as well as families, friends, colleagues and community members. We are open to all suggestions. Submit feedback now.

# data[].attributes.attachment_link.description
Since 1979, REM Iowa has provided quality services to adults and children with intellectual and developmental disabilities and other complex challenges. We also offer services for adults with brain injuries and provide a range of programs, including residential services and day and vocational programs. Our personalized approach maximizes each person's unique efforts to learn, grow and thrive in the communities they call home.

# data[].attributes.attachment_link.readable_text
Moms are fixers.

We fix all the things. From bloody noses and skinned knees, to broken hearts and shattered self images, we have the uncanny ability to make everything right-even when we're not quite sure ourselves how we manage to.

Apparently, however, there are limits to this magic called a mother's love-a reality I've been wrestling with as of late.

My son was diagnosed with intellectual disability later in childhood-at age 10, delayed a bit by pandemic upheaval. Since age 6, Cyrus had carried a clinical diagnosis of Opitz Kaveggia Syndrome-a rare, X chromosome-linked "mental retardation" disorder. Also known as FG Syndrome, the condition often involves " midline defects" like tethered spinal cord, brain abnormalities, and laryngeal cleft, in addition to low muscle tone, absolutely wicked constipation, immune deficiencies, and, well, intellectual disability.

No one symptom, however, is obligatory-not even intellectual disability, Dr. John Opitz, a legend in the world of genetics who discovered this and many other syndromes, and who so generously met with and diagnosed Cyrus in retirement, once told me.

The actual diagnosis of intellectual disability eluded Cyrus for years. Neuropsychological testing repeatedly returned IQ scores in the normal range from ages 4 through 6-though he began to amass an entire collection of other cognitive diagnoses like ADHD, Auditory Processing Disorder, Visual Processing Disorder, Sensory Processing Disorder, executive dysfunction, slow processing speed, and nearly every learning disability known to man.

All the while, most medical and educational professionals dismissed Cyrus' warning signs of intellectual disability, from delayed developmental milestones to woeful academic performance despite every intervention I could afford. Six-year-old Cyrus attended occupational, physical, and/or speech therapy five or six nights a week for years. He would catch up if he just worked harder, they insisted.

How wrong they were. After years of gaslighting, Cyrus' IQ tanked an astonishing 30 points in two years, for reasons we still can't fully explain.

Now, my adorable, sweet intellectually disabled child is turning into an intellectually disabled adult whom society simply doesn't value. While he's only 11, he's in the final stage of puberty, his endocrinologist says-a process hastened by the growth hormone shots he takes nightly because his brain doesn't produce enough. Middle school looms. And nothing I've done-not the countless nights I've lost sleep to research his myriad conditions, not the tens of thousands I've thrown on extra resources insurance won't cover-has changed this reality.

When and where it matters the most, I feel like I've failed. I didn't fix it. I didn't fix him. And the whole thing is gutting me.

The truth I never wanted

Cyrus took what seemed like a weird, winding road to his intellectual disability diagnosis. Despite therapy, he never crawled, and he didn't walk until 2. His speech and fine-motor milestones were delayed, too, but I can't really tell you by how much. He was my first and only-and I was a little too busy keeping a medically complex child alive to pay much attention to whether he could fish Cheerios out of a bottle with an index finger.

Whole genome and exome sequencing were eventually performed on Cyrus, and the results came back a perplexing mix of errors. There was one that would be considered disease-causing if he had two copies instead of one. And there were two of unknown significance-one on a gene that was once a candidate for a type of FG Syndrome, interestingly enough.

As I pushed for additional answers and help for Cyrus, doctors seemed convinced that I hoped something was wrong-as if I had some borderline version of Munchausen that had me wanting the worst for him without actually causing it. But all I wanted was the truth -even though I knew it would be an inconvenient one, at best, and an emotional wrecking ball, at worst.

Mere months before COVID hit, a school psychologist evaluated Cyrus. His IQ came back officially below average-finally, a score that felt a bit more believable. He was reevaluated in the fall of 2021, after he returned to school in person. I convinced the new school psychologist to use a different test that seemed to expose the complex pattern of cognitive strengths and weaknesses in children with a diagnosis similar to my son's-kids who, like Cyrus, had deceptively strong verbal skills and a lot of scatter in other areas.

Things weren't looking good, she warned me as we met throughout the process. When the results had been tallied, she phoned and asked me if I was sitting.

I closed my eyes and braced for the reality I'd spent years attempting to expose, but never truly wanted.

My son was intellectually disabled.

I sighed in relief. At long last, I had the truth. When I opened my eyes, thick cascades of tears enveloped my cheeks. I would spend years dealing with the fallout.

Honestly, I may spend the rest of my life doing so.

My son is not a tragedy

Up until I got the news, I'd existed fairly comfortably in quasi-denial of Cyrus's condition. I would push for recognition of what was "wrong" in a bid to obtain the help he needed, both in and out of school. But I almost preferred to believe I was indeed crazy, that things were not as dire as they seemed. Some ungodly amount of intervention, educational toys, books, camps, classes, therapies, money-for god's sake, take my money-would change his trajectory. He'd grow up to live a fulfilling life that didn't entail marginalization-a life of ease, devoid of the struggle that defined his childhood.

To be fair, I've been fixing things for Cyrus his entire life, and it seemed reasonable that I could do so again. A third of kids with FG Syndrome die before age 2. Those who make it past tend to get heartier with time, they say, until educational concerns surpass the physical ones. I kept Cyrus alive through countless ER visits, ambulance rides, hospitalizations. When no one could figure out what was going on with him, I took him to specialists in five different states on a years-long diagnostic odyssey simply so he could receive help. Our visit with Opitz was the lone bright spot on an otherwise traumatic, bleak, and isolating journey.

I had Cyrus' tethered spinal cord fixed, taught him to walk again after. I had his laryngeal cleft fixed, so he could eat without aspirating. I eventually relented and had a cecostomy tube placed, so his severe constipation wouldn't leave him homebound or hospitalized, unable to go to school or play with friends. No diagnosis or intervention was handed to us; each was hard-won and highly scrutinized.

So why can't I fix this? I wonder, when it comes to his intellectual disability. Such thoughts, however, beg the question, What is there to fix? We're talking about a kid who combs my hair and gives me forehead kisses as I work. Who bails out my car when I'm stuck in the snow, and changes the license plates on my car when I get new ones. Who sends adorably misspelled love notes to the printer on my desk, from the home office where he schools to avoid bullying. Who voluntarily sits with me during low blood sugar episodes, and sets my shoes and coat out for me before I leave the house each day-even when he can't remember exactly how to dress himself.

Shouldn't we all be so lucky, so ridiculously fortunate? I wonder. The anger inside of me stirs at the notion that I, as a parent of an intellectually disabled child, have somehow been shorted, denied what must be the only blessing available to mothers: an honor-roll child who eventually flies the nest to white-collar success.

My son is not a tragedy-I simply won't tolerate the narrative. So why must his future be?

Help him or get out of his way

These days, I don't find myself mourning my son. I do, however, find myself mourning the society that has set him up for struggle and, barring massive intervention, what feels like abject failure. They say so much of the "disabled" experience isn't created by nature, but by society. I'm sad and angry that we live in a world with so many people seemingly hell-bent on manufacturing obstacles for people like him, instead of helping them overcome the relatively few placed there by nature.

Last weekend I took Cyrus to welding class, something I signed him up for in a bid to discover a hidden talent or passion of his. The instructors, I've heard, heap praise on him, and I needed to know if they were simply being kind. Could my son actually have a future in an industry that pays decently, I wondered-an alternative to the minimum-wage service positions adults with intellectual disabilities are so readily relegated to?

Cyruse has potential, the instructor assured me. Low reading and math skills are likely to limit his opportunities, and fine motor issues the types of welding he'll excel at. But he's creative and resourceful, with a winning attitude. He's kind and he works hard, and has a solid handshake. Show up five minutes early to class and leave five minutes late, and he'll have certifications and a reference when the time comes, I was told.

There it was, back without warning: the sigh of relief and cascade of tears that accompanied news of Cyrus' intellectual disability diagnosis.

But this time, there were tears of joy.

I'd had everything about my son backwards-and the epiphany came not from the doctors and educators I'd so desperately looked to over the years, but from the owner of a welding shop who wasn't intimidated by the notion of teaching a slow kid to play with fire.

My son doesn't need fixing. Not only does he brighten days on the regular, he has talent of tangible benefit to society. I just had to dig for it when no one else cared to. Society needs fixing, but it's a problem too large and looming for one mom. Still, I can chip away at the backward ableist thinking of the world, be it hateful or merely ignorant.

I can find a path for Cyrus, reminding him that the limits others place on him exist only in their minds. And I can clear that path with relentless abandon-woe to any who gets in his way.

Years ago, as I sat in the NICU, wrestling with what Cyrus' future might look like, a nurse shared a pearl of wisdom I've never managed to forget. Sometimes, she said, kids like Cyrus just need someone to walk with them.

Not fix them. Not fix the world for them. Just journey with them.

We are simply humans, with our trials and travails, walking each other home.

Anyone who would have you believe his story is a tragedy has some soul-searching to do.

It will, however, be a triumph.

# data[].attributes.attachment_link.title
My intellectually disabled child is growing up to be an intellectually disabled adult. I won't let it be a tragedy

# data[].attributes.attachment_link.description
Moms are fixers. We fix all the things. From bloody noses and skinned knees, to broken hearts and shattered self images, we have the uncanny ability to make everything right-even when we're not quite sure ourselves how we manage to. Apparently, however, there are limits to this magic called a mother's love-a reality I've been wrestling with as of late.

# data[].attributes.attachment_link.readable_text
The Arc of the US is pleased to announce that we are now accepting applications for our next Chief Executive Officer (CEO). The CEO will lead the largest national community-based organization advocating for and with people with intellectual and developmental disabilities (IDD).

The next CEO must be a dynamic, engaging, and collaborative leader who can work with chapters, staff, and the IDD community.

# data[].attributes.attachment_link.title
The Arc | For People With Intellectual & Developmental Disabilities

# data[].attributes.attachment_link.description
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities (IDD).

# data[].attributes.body
This is a story touching on how long it takes to get the resources provided.

# data[].attributes.attachment_link.readable_text
"These are people who have been with us for years; we love them," Goodwin said. "They are losing their homes through no fault of their own. We have just run out of options."

In Connecticut, one provider has closed 10 group homes; in Oklahoma, dozens of residential units sit empty for want of staff; and in Texas, budgets are running increasingly in the red.

Two decades after the Supreme Court ruled states must provide care for the disabled in the least restrictive setting possible, home- and community-based service providers are floundering. Many states, flush with cash thanks to a juiced economy and federal stimulus, may need to act following years of inadequate funding that left an already fragile system on the verge of collapse.

Across the country, more than three-quarters of providers said they've turned away referrals, and more than half have discontinued programs, according to a survey from the American Network of Community Options and Resources, an advocacy group.

What happens to the residents? They live with siblings or their elderly parents, some who are themselves in need of care, or they become wards of the state, sent to live in larger and larger facilities, the kind of institutionalized settings the country swore off nearly 50 years ago.

Interviews with more than a dozen providers across the country reveal a patchwork of perennially cash-strapped programs unable to recruit and retain staff, leaving desperate families on yearslong waiting lists.

Most agencies rely on state and federal Medicaid money to pay employees and can't increase salaries to compete with the retail or food-services industries because Medicaid rates are set by the state. Though that's always been a challenge, it's exacerbated during periods of high inflation when wages in other sectors rise and the cost of living increases, making it that much more tempting for employees to take a new job that pays a couple dollars more an hour.

Wages grew nearly 10 percent in leisure and hospitality over the last year, according to the Bureau of Labor Statistics, and roughly 5 percent in retail.

"With the price of gas, people can't afford to drive an extra 20 miles for a $14-an-hour job when they drive past six places that pay $15," said Angela King, CEO of Volunteers of America Texas.

King has consolidated five homes into three and is preparing a budget for her board that shows an $80,000 loss on each of those homes.

She can dip into reserves to make ends meet but for only so long, she said. Other providers delay capital improvements or offer gas cards in lieu of raises.

"I really do not see this system of care being sustainable," King said.

While the workforce crisis predates the pandemic, it was also worsened by it as the number of work-from-home opportunities increased, luring employees away from jobs that tether them to residents.

"They can work for a call center, stay home and earn the same amount ... and not worry about daycare," said Barry Simon, president and CEO of Oak Hill, which provides disability services in Connecticut.

Turnover rates have climbed to nearly 50 percent nationally, meaning half of all employees need to be replaced every year, a huge expense in time and training.

Meanwhile, the waitlist of intellectually and developmentally disabled Americans who need home- and community-based services is growing rapidly, far eclipsing the ability of state governments to serve people who need help with basic daily tasks like bathing, cooking and dressing.

More than 665,000 Americans are on a waiting list, according to a 2020 survey from the Kaiser Family Foundation, the most recent year for which data is available. While the way states collect and sort data makes year-over-year comparisons difficult, analysts and experts who study the nation's waitlist say the trend is going in the wrong direction, and anecdotal evidence suggests the pandemic made everything - the burnout, resignations and resulting inflation - worse.

"It's just been hellish," said Diane Wilush, president and CEO of United Cerebral of Georgia and South Carolina. "People will die waiting."

Most states were helped by last year's American Rescue Plan, which temporarily boosted federal matching funds for home- and community-based services. Many providers used the bump to supplement wages or offer pandemic signing bonuses, but that moneywas never intended to be a permanent fix.

"We've offered bonuses, but [employees] know that's not permanent," Wilush said. "When Target goes to $24 an hour, it's really hard to compete with that."

The Biden administration sought to shore up those programs, proposing $400 billion in new money for home- and community-based services in the Democrats' social spending package. House Democrats put about $150 billion in their version that passed last year - but it was not included in the reconciliation package that the Senate passed this week, meaning it is unlikely providers will see new money any time soon.

Without more money to recruit and retain staff, providers believe the trend of placing people in larger group homes will accelerate. While wealthier families may be able to pay for private services, middle-class and lower-income families will likely see the quality of their loved one's care diminish. The difference between a 4-bed home and a 12-bed home can be monumental for the resident, who is likely to receive less attention and have fewer options for recreation.

"If you have one person looking after eight people who are totally dependent or even partially dependent - and they need to be bathed and have their meals cooked - you run out of energy to do anything but basic hygienic care," King said.

'What is going to happen to her?'

In 1999, the Supreme Court ruled that states must provide people with intellectual and developmental disabilities services in the least restrictive setting possible - in other words, a community. What became known as the Olmstead ruling stemmed from a case involving Lois Curtis and Elaine Wilson, two Georgia women who were voluntarily admitted to the psychiatric unit in the state-run Georgia Regional Hospital. Even after their medical treatment was completed the women were confined to the institution, which they said amounted to illegal discrimination under the Americans with Disabilities Act.

The court's ruling - that states must provide community-based services when appropriate - was hailed by disability advocates as a watershed moment in the fight against institutionalization.

But 23 years later, hundreds of thousands of people with intellectual and developmental disabilities struggle to get the services they need. The court's ruling dealt a blow to institutional settings - and most states have moved away from that model of care - but did little to help smaller community-based settings flourish. The decision did not force states to pay for community-based settings, only to provide them when resources are available, a squishiness that, in part, explains the current predicament.

Over time, Medicaid rates failed to keep up with rising costs, putting a squeeze on the system. Simon said he hasn't received an increase for administrative and general expenses - essentially, capital improvements - in 17 years.

Georgia, the state where Olmstead began, now exemplifies what can go wrong. The state has around 7,000 families on a waiting list.

Pam Walley sees it from both sides. She works for Georgia Options, which provides support services for people with disabilities in their own homes. Walley knows her organization can't compete with employers like Amazon that pay $20 an hour, about twice what service providers earn in Georgia.

She is also caring for her 27-year-old daughter with special needs and is one of the thousands of aging parents across the country forced to ponder what will happen to their children when they can no longer bear the burden of feeding, toileting and bathing grown men and women.

"I just had my 60th birthday and I am tired and my health is failing and I'm not going to live forever," she said. "What is going to happen to her? ... I don't want her to be in an institution, I don't want her to live in a nursing home, but frankly, that's all that exists for her."

Single parents, who care for their adult children, told POLITICO of an impossible balancing act: every haircut or trip to the grocery store comes with the knowledge that they must find someone to stay home with their child or bring that child into an environment that can trigger an emotional or behavioral meltdown.

The Georgia legislature this year budgeted for an additional 413 Medicaid waiver slots on top of 100 that Republican Gov. Brian Kemp put in his budget. That's a record number, said Democratic state Sen. Sally Harrell, who sponsored the legislation, but it's far from what is needed to eliminate the state's waiting list.

And without state money to increase how much agencies can pay employees, families won't be able to take advantage of the new waiver money because there won't be enough staff to serve them.

"You've got to put the waiver money out there and you've got to put the provider money out there," Harrell said.

Kemp signed legislation, sponsored by Harrell, requiring regular evaluations of the rates for service providers and caregivers who in Georgia earn roughly $10 an hour, but it would take additional legislative action to meaningfully increase wages.

"That's less than a babysitter, less than a dog walker, less than a grocery clerk," said Philip Woody, a disability advocate in Georgia, who worked with Harrell. "That's just ridiculous."

'It's still a huge problem'

Waiting lists for services exist because states, through their Medicaid programs, can cap the number of slots available for people with needs. People with intellectual and developmental disabilities typically spend years on a waiting list, according to the Kaiser Family Foundation, and it's not uncommon for a person to spend a decade waiting for a spot to open up, said Wilush.

And even when states like Georgia devote more money to open new slots, it may not be enough to recruit and retain the nurses and other direct support staff needed to care for people who have been approved for services, leaving families in a tortured limbo in which they find themselves approved for services but unable to find anyone to do the work.

"You get off a waiting list for waivers and onto a new waiting list for services," Woody said. His son Evan, who suffered a traumatic brain injury when he was 18 months old, qualifies for services but waited two years to get into a day program because there wasn't enough staff.

In Oklahoma, the legislature put more than $21 million into the recently passed budget to clear the state's 5,000-plus person waiting list, on which people wait up to 13 years.

But even if the state manages to work its way through the waitlist - and some still feel it hasn't provided nearly enough funding to do so - those approved for services may discover no caregiver is available to help them.

"It's still a huge problem," said RoseAnn Duplan, a policy and communications specialist with the Disability Law Center in Oklahoma. "We have people now qualifying for services, and when they go to find a provider, they are put on a waiting list for providers because there is just no staff."

Oklahoma's budget also included a 25 percent increase in provider rates set to take effect on Oct. 1, which will provide a boost but won't be enough to compete with retail or service work.

Costco or 7-Eleven pay $15 an hour, Duplan said, significantly more than what most agencies offer.

"Providers are a little bit panicked," she said. "The pool of employees has dwindled because of wages going up in other sectors."

Mary Ogle, chief executive officer at A New Leaf, a nonprofit in Oklahoma, said she recently completed 62 units of affordable housing for people with intellectual and developmental disabilities. Those rooms sit empty because she cannot find staff.

Dozens of families are left waiting. Some parents in their 80s thought the housing would answer their prayers.

"It's crushing," Ogle said. "We did everything right; we built additional housing for this population because, across the country, there is a huge shortage, so, we as a provider, said, 'We will fix that.'"

Oklahoma's unemployment rate is 2.9 percent. The job market is so hot that people who interview in the morning have often accepted another offer by the afternoon, Ogle said.

She offers a starting rate of $11.73 an hour, which can go to $15.73 with overtime. But Hobby Lobby, the popular retail chain, pays $18.50 an hour.

Ogle has a list of 150 people waiting for residential services, the kind she could fill if she could staff the 62 waiting units.

"I've never had a waiting list before," she said. "Our waiting list has continued to grow because we don't have the staff to add more people."

# data[].attributes.attachment_link.title
'People will die waiting': America's system for the disabled is nearing collapse

# data[].attributes.attachment_link.description
"These are people who have been with us for years; we love them," Goodwin said. "They are losing their homes through no fault of their own. We have just run out of options." In Connecticut, one provider has closed 10 group homes; in Oklahoma, dozens of residential units sit empty for want of staff; and in Texas, budgets are running increasingly in the red.

# data[].attributes.attachment_link.title
Students with intellectual and developmental disabilities on the road to postsecondary opportunities

# data[].attributes.attachment_link.description
Community colleges in North Carolina teach key life skills in programs for students with intellectual or developmental disabilities.

# data[].attributes.attachment_link.title
Georgia sets legal bar very high to shield intellectually disabled people from death penalty

# data[].attributes.attachment_link.description
Nearly four decades ago, public outrage over the execution of Jerome Bowden, a man with an IQ of 65, spurred Georgia lawmakers to exempt people who are intellectually disabled from the death penalty.

# data[].attributes.attachment_link.title
Stories from People Living with a Disability

# data[].attributes.attachment_link.description
A collection of real stories from people living with diabilities.

# data[].attributes.attachment_link.title
Inpatient Services | Tanager | Specialized Children’s Care

# data[].attributes.attachment_link.description
Tanager offers two inpatient services for children and teens struggling with cognitive, developmental, and behavioral challenges.

# data[].attributes.attachment_link.description
When you support The Arc of East Central Iowa you support programs, services, and advocacy that in turn help build better lives for individuals with intellectual and developmental disabilities, their families, and our community. Learn more about the different ways to make an impact by exploring ways to give.