These are the people at the mercy of Trump’s healthcare bill

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These are the people at the mercy of Trump’s healthcare bill
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They are the families who waited years for services for their disabled children. Theyre the people with disabilities who need basic support. What happens if even more money is removed from the system?

With a green mohawk, colored to match his wrist wraps and the lettering on his teams shirts, Andrew Big Diesel Dziezak steps up to the deadlift bar bearing a weight of 385 lbs. His parents sit in the audience surrounded by 15 team-mates and half a dozen coaches, expectant. This is Big Diesels first of three deadlifts of the day.

The sides of his head have been shaved into two symbols: on the left a puzzle piece, a common icon for autism awareness, the condition for which Big Diesel was diagnosed. On the other, a barbell bearing the weight 400, his gold-winning personal best from the previous years state championship for Indianas Special Olympics.

Diesel lifts the 385 lbs with relative ease and a shout, and the three white lights indicating a clean lift from each of the judges signal a small victory. As he exits the platform he hi-fives his coach, chalk dust pluming from their exultation.

Two more lifts until a winner will stand atop the podium bearing a gold medal.

I learned everything [from the Special Olympics], said Diesel. I feel more confident. I look forward to this all year.

Leslie Dziezak, Diesels mother, is delighted. Definitely his communication skills have gotten better hes just blooming, she says. She coaches a Special Olympics volleyball team warming up just down the hall. Theres so much love and acceptance here. Its like the biggest family youll ever have.

Andrew
Andrew Dziezak hair carvings reflect his goal in power lifting. Photograph: AJ Mast/Getty Images for the Guardian

The Special Olympics are, well, a special place. While inside the loving embrace of the games, athletes are well taken care of. The same cant always be said of the support system provided by society at large.

According to Michael Furnish, CEO of Special Olympics Indiana, half of the athletes have the wrong size shoes on. Three out of 10 athletes have untreated tooth decay. Four out of 10 need glasses. Three of 10 fail hearing tests. And Special Olympics athletes are 50% more likely to die by the time they are 50 than the general population.

Having an intellectual disability doesnt make you an unhealthy person. Something else is contributing to this effort, he said.

23 million more people uninsured in a decade

As Diesel picks up the 400lb bar to match last years gold winning lift, the US Senate is busy negotiating a new healthcare bill in secret.

Its based on the American Health Care Act, recently hammered out by the House, which removes protections for pre-existing conditions, of which many belonging to athletes in the weight room apply: Downs syndrome, autism and chromosomal disorders among them. It also begins to remove Medicaid increases gained under Obamacare.

The bill, if enacted in its current form, would leave 23 million more people uninsured in a decade, according to the Congressional Budget Office, a non-partisan federal agency.

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An athlete competes in the mini-javelin event. Photograph: AJ Mast/Getty Images for the Guardian

Are Diesels parents worried about the changes in healthcare happening in Washington for his sons and team-mates?

Its actually one of our biggest fears, his mother said. We waited 13 years for Andrew to get on the autism waver [a Medicaid program to provide long-term support for those with autism], and prior to that we paid for all of his expenses out of pocket. We were fortunate to be able to do that, and we worked very hard to be able to do that

I worked three jobs, Andrews father Ray chimes in, holding up three fingers.

There are a lot of families who are not in that position, and the waiting list is still long and the services are still minimal. If they take that away theres going to be a lot of people in limbo … she trails off, shaking her head. I would say the majority of these people are on the Medicaid waver and without that they would not have their behaviorist, or their speech therapist, or the occupational therapist

Housing, Ray chimes in again.

Housing. Leslie nods. Medicaid often provides the money for services to keep people in their homes and in the community, an essential step forward from the past in which people were warehoused in facilities largely separate from society.

Without this help, Leslie says, they wouldnt be able to get out into the community and learn to be functional adults in society. Theyll be put in the back corner, because society isnt going to know what to do with them.

Diane
Diane Watson, right, poses for a portrait with her grandson Jori Watson, showing off his seventh-place ribbon. Photograph: AJ Mast/Getty Images for the Guardian

Theres a dichotomy between town names scattered around central Indiana. Half seem as if theyre named after 19th-century presidents, and the other half suggest their founders were dreaming of somewhere else, warmer in the winter and perhaps with fewer chores in the summer. Places like Paris, and Peru (which the old-timers pronounce P-rue), and Kokomo.

Diane Watson put in 30 years at the General Motors plant in Kokomo, earning retirement. She stood against a waist high chain-link fence at the Indiana State University running track, preparing to cheer on her live-in grandson, Jori, who has special educational needs. He stood with a determined smile at the startling line of the 50 yard dash.

We dont know what were going to lose, and people with pre-existing conditions we just dont know, Watson said, echoing the sentiment of many parents at the games. I would struggle immensely, I really would. Im retired. I live on a pension. It would affect us even more so than it already does.

Terre Haute was once known as the crossroads of America its still Indianas state motto and the people of Vigo County vote like it.

Political scientists call Vigo, for which Terre Haute is the county seat, a bellwether county it has voted with the winning presidential candidate each year since 1888, excepting two. Only one county in the US has had a more steady record. Indiana as a whole voted with Trump 56.5-37.5, as did Vigo, 55.4-40.2.

The president, after lobbying representatives and urging passage of the Houses version of the AHCA, has recently switched tone, and called the bill mean.

Watsons fears were repeated time and again by parents and caretakers at the games: what is happening in Washington behind closed doors? Weve waited years for services for our child, and what happens if even more money is removed from the system? What happens when I am gone and no longer able to provide, and my child is under the care of the government?

I dont know what else I could have done, Watson said. Id have to go back to work, because how would you pay for it?

The American Healthcare Act will be a disaster for people with intellectual and developmental disabilities, said Peter Berns CEO of the Arc, a nationwide charity federation. It will have a devastating impact on their lives and will frankly be a giant step backward with all the progress the disability community has made over the years.

Jori said the Special Olympics has given him more confidence and hes allowed to be himself at the games. Just have fun, he said. I have fun with friends.

He received a ribbon for eighth place in the 50-yard dash, and a bronze medal in the softball toss.

Jori and Diesel have strong families that can provide an extra level of care, are sophisticated enough to navigate the labyrinthine governmental institutions and acronym-named programs, and have access to doctors who treat people with intellectual disabilities a population far greater than the number of physicians available with specialized training who can accommodate those with special needs. It is also frequently far more costly for doctors to care for patients with disabilities, often a money-losing proposition.

The payment system is so poor for paying health professionals for many of them every time they see a patient with disability they actually lose money, said Dr Richard Schreiner, a retired pediatrician, Special Olympics board member, and father of an athlete in the games.

The national debate over healthcare is complicated by administration by state each has limited leeway to decide how federal dollars will be spent.

Indiana has taken a more conservative approach to Medicaid expansion, with some patients paying more out of pocket and lockouts on coverage for those who fail to keep up with premiums. With federal money provided by the Affordable Care Act, the state has extended the program to more than 350,000 individuals. Although more people are covered, theres still not enough money to go around for those who are disabled.

In reality, the old system, whether you consider the ACA [Obamacare] era or before that, has failed our population, Indiana Special Olympics CEO Furnish said. Theres no reason for hope that the changes that are being proposed will make a positive difference for people with intellectual disabilities.

He was echoed by Dr Mary Ciccarelli, professor of clinical medicine and clinical pediatrics at Indiana Universitys school of medicine and longtime Special Olympics Indiana volunteer.

We have a lot of good resources as a community to help people, but accessing all the right services at the right time for the right people, we fall very short. So while we might have a program that will fit this person, theres a high chance this person isnt getting served by that program. So then, whose fault is that if youre a person with cognitive impairments that you dont access what you could?

One out of four doesnt have dental health access

Special Olympics Indiana is attempting to fill the gaps. Located in a parking lot across from the running track, the Olympic Village is a small tent city with a carnival atmosphere where the more than 2,500 participants can play bingo in the merciful shade, enjoy a bottle of water and a banana, or watch one of the shows presented on the small stage in the center, like an animal encounter or martial arts demonstration.

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An athlete gets a free eye exam in Olympic town at the Indiana Special Olympics. Photograph: AJ Mast/Getty Images for the Guardian

Crucially, participants can also be screened at six stations for conditions often compounded by intellectual disability, including hearing and vision tests, dental and flexibility screening, and podiatry. If athletes are found to have an issue, they are referred to a doctor in their area.

As with nearly every official, coach, or doctor participating in the Summer Games, all are volunteers. If participants complete at least three of the screenings, they receive a free pair of shoes donated by the retail chain The Finish Line.

One out of four doesnt have a dental home or dental access, said Dr Stuart Schrader, a clinical professor of behavioral sciences helping out in the dental tent. People on Medicaid have a limited amount, a cap, for what they can access.

Schrader said it was typically between $1,000 and $1,500 a year for Indiana depending on the state administration, an inadequate amount. For some states, its nothing. Prevention has been shown to reduce overall costs for the long term. And we pay for it anyway, he said.

Referring to the direction of the new bills, he says, its the absolute wrong local, global, national, International Space Station, Space-X wrong decision.

Dentistry is just one of the ancillary areas of healthcare often uncovered or under covered by private insurance plans. Services such as vision, hearing, speech pathologists and behaviorists, and other specialized disciplines often required by patients who are intellectually disabled are often filled with a Medicaid waiver or not at all.

We were starting to make some traction in getting people to understand: oh, wait a second, those Medicaid cuts, thats your mother in a nursing home, thats your child that has an aid coming to the house every day to get him out of bed and clean out his trach tube so he can go to school. Thats what Medicaid is, said Curt Decker, the executive director of the national disability rights network.

Decker agreed with many of the advocates, parents, and doctors involved with the Special Olympics.

A lot of Medicaid services for people with disabilities are optional already, and if states are given more flexibility, clearly some states that are more fiscally conservative or just have budget problems, may take that opportunity to roll back essential services and its such a pennywise pound-foolish thing If they cut those things back people will end up back in nursing homes, back in more congregate settings at a much higher cost.

Leslie
Leslie Dziezak beams after her son scores a win. Photograph: AJ Mast/Getty Images for the Guardian

Back in the weight room, Big Diesel prepares himself for his final lift of 450 lbs, far heavier than two typical washing machines. If he can hoist the bar, a personal best for the Games, it will put him on top of the podium draped in gold.

The thing that characterizes our movement compared with people from all other angles on healthcare, is that our constituents are less likely to stand up for themselves, CEO Furnish said earlier. Were transforming as an organization a little bit to do what we can to make sure that voice is heard.

Diesel squats and grips the bar, one hand facing forward the other backward. The room is silent, aside from Diesels deep breaths.

This is it. Theres no second chance. 450 lbs.

We need a change in how people perceive what we do. Were not just nice, were necessary, said Furnish. The work that the Special Olympics does is relevant to the lives of the people, its life changing to the people we have served, and as we have championed the inclusion of people with intellectual disabilities, what were really championing today is equality and justice. We do think its not right to leave people behind because you can.

Diesel shouts, he lifts and

Hes done it.

The bar bangs back to earth, and suddenly Diesel is surrounded by cheering team-mates and family members, many of whom are at the mercy of the politicians in Washington.

Diesels friends and family use a permanent marker to change the weight on the bar shaved into his head, crossing out 400 and adding his new, winning lift. Aside from a bronze and a silver, hes won two gold medals for the day: for the deadlift and combined weight lifted in all three events.

Diesel raises his hands in a triumphant flex and shouts: I did it! Im the king of Indiana!

Andrew
Andrew Dziezak celebrates his 450lb lift in power lifting. Photograph: AJ Mast/Getty Images for the Guardian

Read more: https://www.theguardian.com/us-news/2017/jun/20/people-indiana-republican-healthcare-bill-insurance

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