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MONTROSE, Mo. It took Samantha Lesmeisters family four months to find a medical professional who could see that she was struggling with something more than her Down syndrome.

This story also ran on NBC News. It can be republished for free.

The young woman, known as Sammee, had become unusually sad and lethargic after falling in the shower and hitting her head. She lost her limited ability to speak, stopped laughing, and no longer wanted to leave the house.

General-practice doctors and a neurologist said such mental deterioration was typical for a person with Down syndrome entering adulthood, recalled her mother, Marilyn Lesmeister. They said nothing could be done.

The family didnt buy it.

Marilyn researched online and learned the University of Kansas Health System has a special medical clinic for adults with Down syndrome. Most other Down syndrome programs nationwide focus on children, even though many people with the condition now live into middle age and often develop health problems typically associated with seniors. And most of the clinics that focus on adults are in urban areas, making access difficult for many rural patients.

The clinic Marilyn found is in Kansas City, Kansas, 80 miles northwest of the familys cattle farm in central Missouri. She made an appointment for her daughter and drove up.

The programs leader, nurse practitioner Moya Peterson, carefully examined Sammee Lesmeister and ordered more tests.

She reassured me that, Mom, youre right. Somethings wrong with your daughter, Marilyn Lesmeister said.

With the help of a second neurologist, Peterson determined Sammee Lesmeister had suffered a traumatic brain injury when she hit her head. Since that diagnosis about nine years ago, she has regained much of her strength and spirit with the help of therapy and steady support.

Sammee, now 27, can again speak a few words, including hi, bye, and love you. She smiles and laughs. She likes to go out into her rural community, where she helps choose meals at restaurants, attends horse-riding sessions at a stable, and folds linens at a nursing home.

Without Petersons insight and encouragement, the family likely would have given up on Sammees recovery. She probably would have continued to wither within herself, her mother said. I think she would have been a stay-at-home person and a recluse. Samantha Sammee Lesmeister rides a horse with the help of instructors Rike Mueller (left) and Samantha Richardson at Remember to Dream, a therapeutic riding center in Cole Camp, Missouri. (Christopher Smith for KFF Health News) Samantha Sammee Lesmeister hugs a horse named Dragon. (Christopher Smith for KFF Health News)

A Whole Different Ballgame

The Lesmeisters wish Petersons program wasnt such a rarity. A directory published by the Global Down Syndrome Foundation lists just 15 medical programs nationwide that are housed outside of childrens hospitals and that accept Down syndrome patients who are 30 or older.

The United States had about three times as many adults with the condition by 2016 as it did in 1970. Thats mainly because children born with it are no longer denied lifesaving care, including surgeries to correct birth defects.

Adults with Down syndrome often develop chronic health problems, such as severe sleep apnea, digestive disorders, thyroid conditions, and obesity. Many develop Alzheimers disease in middle age. Researchers suspect this is related to extra copies of genes that cause overproduction of proteins, which build up in the brain.

Taking care of kids is a whole different ballgame from taking care of adults, said Peterson, the University of Kansas nurse practitioner.

Sammee Lesmeister is an example of the trend toward longer life spans. If shed been born two generations ago, she probably would have died in childhood.

She had a hole in a wall of her heart, as do about half of babies with Down syndrome. Surgeons can repair those dangerous defects, but in the past, doctors advised most families to forgo the operations, or said the children didnt qualify. Many people with Down syndrome also were denied care for serious breathing issues, digestive problems, or other chronic conditions. People with disabilities were often institutionalized. Many were sterilized without their consent.

Such mistreatment eased from the 1960s into the 1980s, as people with disabilities stood up for their rights, medical ethics progressed, and courts declared it illegal to withhold care. Those landmark rulings sealed the deal: Children with Down syndrome have the right to the same lifesaving treatment that any other child would deserve, said Brian Skotko, a Harvard University medical geneticist who leads Massachusetts General Hospitals Down Syndrome Program.

The median life expectancy for a baby born in the U.S. with Down syndrome jumped from about four years in 1950 to 58 years in the 2010s, according to a recent report from Skotko and other researchers. In 1950, fewer than 50,000 Americans were living with Down syndrome. By 2017, that number topped 217,000, including tens of thousands of people in middle age or beyond.

The population is expected to continue growing, the report says. A few thousand pregnant women a year now choose abortions after learning theyre carrying fetuses with Down syndrome. But those reductions are offset by the increasing number of women becoming pregnant in their late 30s or 40s, when they are more likely to give birth to a baby with Down syndrome.

Skotko said the medical system has not kept up with the extraordinary increase in the number of adults with Down syndrome. Many medical students learn about the condition only while training to treat pediatric patients, he said.

Few patients can travel to specialized clinics like Skotkos program in Boston. To help those who cant, he founded an online service, Down Syndrome Clinic to You, which helps families and medical practitioners understand the complications and possible treatments. Email Sign-Up

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If They Say It Hurts, I Listen

Charlotte Woodward, who has Down syndrome, is a prominent advocate for improved care. She counts herself among the tens of thousands of adults with the condition who likely would have died years ago without proper treatment. Woodward, 33, of Fairfax, Virginia, had four heart surgeries as a child and then a heart transplant in her 20s.

Woodward, who is an education program associate for the National Down Syndrome Society, has campaigned to end discrimination against people with disabilities who need organ transplants.

She said her primary care doctor is excellent. But she has felt treated like a child by other health care providers, who have spoken to her parents instead of to her during appointments.

She said many general-practice doctors seem to have little knowledge about adults with Down syndrome. Thats something that should change, she said. It shouldnt just be pediatricians that are aware of these things.

Woodward said adults with the condition should not be expected to seek care at programs housed in childrens hospitals. She said the country should set up more specialized clinics and finance more research into health problems that affect people with disabilities as they age. This is really an issue of civil rights, she said.

Advocates and clinicians say its crucial for health care providers to communicate as much as possible with patients who have disabilities. That can lead to long appointments, said Brian Chicoine, a family practice physician who leads the Adult Down Syndrome Center of Advocate Aurora Health in Park Ridge, Illinois, near Chicago.

Its very important to us that we include the individuals with Down syndrome in their care, he said. If youre doing that, you have to take your time. You have to explain things. You have to let them process. You have to let them answer. All of that takes ore time.

Time costs money, which Peterson believes is why many hospital systems dont set up specialized clinics like the ones she and Chicoine run.

Petersons methodical approach was evident as she saw new patients on a recent afternoon at her Kansas City clinic. She often spends an hour on each initial appointment, speaking directly to patients and giving them a chance to share their thoughts, even if their vocabularies are limited.

Her patients that day included Christopher Yeo, 44, who lives 100 miles away in the small town of Hartford, Kansas. Yeo had become unable to swallow solid food, and hed lost 45 pounds over about 1 years. He complained to his mother, Mandi Nance, that something tickled in his chest.

During his exam, he lifted his shirt for Peterson, revealing the scar where hed had heart surgery as a baby. He grimaced, pointed to his chest, and repeatedly said the word gas.

Peterson looked Yeo in the eye as she asked him and his mother about his discomfort. Nurse practitioner Moya Peterson speaks to patient Christopher Yeo, of Hartford, Kansas. Peterson leads an unusual clinic for adults with Down syndrome, which is housed at the University of Kansas Health System in Kansas City.(Tony Leys / KFF Health News)

The nurse practitioner takes seriously any such complaints from her patients. If they say it hurts, I listen, she said. Theyre not going to tell you about it until it hurts bad.

Yeos mother had taken him to a cardiologist and other specialists, but none had determined what was wrong.

Peterson asked numerous questions. When does Yeos discomfort seem to crop up? Could it be related to what he eats? How is his sleep? What are his stools like?

After his appointment, Peterson referred Yeo to a cardiologist who specializes in adults with congenital heart problems. She ordered a swallowing test, in which Yeo would drink a special liquid that appears on scans as it goes down. And she recommended a test for Celiac disease, an autoimmune disorder that interferes with digestion and is common in people with Down syndrome. No one had previously told Nance about the risk.

Nance, who is a registered nurse, said afterward that she has no idea what the future holds for their family. But she was struck by the patience and attention Peterson and other clinic staff members gave to her son. Such treatment is rare, she said. I feel like its a godsend. I do, she said. I feel like its an answered prayer.

Like a Person, and Not a Condition

Peterson serves as the primary care provider for some of her patients with Down syndrome. But for many others, especially those who live far away, she is someone to consult when complications arise. Thats how the Lesmeisters use her clinic.

Mom Marilyn is optimistic Sammee can live a fulfilling life in their community for years to come. Some people have said I need to put her in a home. And Im like, What do you mean? And they say, You know ? a home, she said. Im like, Shes in a home. Our home.

Sammees sister, who lives in Texas, has agreed to take her in when their parents become too old to care for her.

Marilyns voice cracked with emotion as she expressed her gratitude for the help they have received and her hopes for Sammees future.

I just want her to be taken care of and loved like I love her, she said. I want her to be taken care of like a person, and not a condition. Marilyn Lesmeister and her daughter Samantha Sammee Lesmeister.(Christopher Smith for KFF Health News)

Tony Leys: tleys@kff.org, @tonyleys Related Topics Health Industry Mental Health Rural Health States Disabilities Kansas Missouri Virginia Contact Us Submit a Story Tip

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Reeves hands NHS £29bn extra per year and pledges to end asylum hotels

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June 12, 2025

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Reeves hands NHS £29bn extra per year and pledges to end asylum hotels

Day-to-day spending on the NHS will increase by £29bn a year, Rachel Reeves has announced, as she accepted that voters are yet to feel an improvement under Labour.

Delivering her spending review, the chancellor also declared an end to the use of asylum hotels this parliament by investing in cutting the backlog and returning more people with no right to be in the UK – which she said would save taxpayers £1bn a year.

Politics live: Reaction to spending review

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Government to stop housing asylum seekers in hotels

Ms Reeves acknowledged that almost 12 months on from Labour’s landslide election victory, “too many people” are yet to feel their promise of national renewal.

She said the purpose of her spending review is “to change that”, with departmental budgets to grow by an average of 2.3% a year in real terms until 2028-29.

Key settlements include:

• NHS: The health service gets £29bn for day-to-day spending – a 3% rise for each year until the next general election;
• Housing: £39bn over the next 10 years to build affordable and social housing;
• Defence: Spending will rise from 2.3% of GDP to 2.6% by 2027, made up of an £11bn uplift on defence and £600m for security and intelligence agencies;
• Science and tech: Research and development funding will hit £22bn, with AI plans getting £2bn;
• Transport: £15bn for new rail, tram, and bus networks in the North and the West Midlands, a new rail line between Liverpool and Manchester, and a four-year settlement for TfL, plus the £3 bus fare cap extended to 2027;
• Nations: Scotland gets £52bn, Northern Ireland £20bn, and Wales £23bn, including for coal tips;
• Education: Free school meals extended to 500,000 children, while the extra £4.5bn per year will also go on fixing classrooms and rebuilding schools;
• Nuclear: A £30bn commitment to nuclear power, including £14.2bn to build Sizewell C plant in Suffolk and £2.5bn in small modular reactors;
• Prisons: 14,000 new prison places will be funded with a £7bn injection;
• Police: 13,000 more police officers will be paid for with £2bn.

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£11bn increase in defence spending

Read more: The key announcements

Many of Wednesday’s announcements have been front-loaded by cash injections made since Labour took office, meaning that from 2025-26 the increase is a more modest 1.5% on average.

Over the course of the whole parliament, it equates to spending £190bn more on the day-to-day running of public services and £113bn more on capital investments than under the previous government’s spending plans, the chancellor said.

Ms Reeves drew a distinction between her review and the Tories’ austerity agenda in 2010, saying they cut spending by 2.9%.

She said austerity was a “destructive choice for the fabric of our society” and “different choices” would be made under Labour.

However, while overall departmental spending will increase day to day, some departments face a squeeze.

Home Office budget squeezed

This includes the Home Office, whose spend will reduce by 1.4% over the next three years, including daily spend and capital investments.

Daily spend covers the daily running costs of public services, while capital investment is spending by the state on the creation of fixed, long-term assets, such as roads and railways.

Combined, the Foreign Office and Department for Environment, Food and Rural Affairs (DEFRA) also face reductions, as does the Department for Digital, Culture, Media and Sport, and the Cabinet Office.

Paul Johnson, the director of the Institute for Fiscal Studies, said 3% a year increases in NHS spending “does mean virtually nothing on average for current spending elsewhere”.

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Reeves attacks Tory economic record

Ms Reeves said the cash boost for the NHS would fund more appointments, more doctors and more scanners.

She used this to draw dividing lines with Reform UK, saying they have called for an ‘”insurance-based system” whereas Labour created the NHS, protected the NHS and under this government would “renew the NHS”.

Read more:
The spending review: Five things you need to know

Speculation of tax rises

Ms Reeves said she was able to raise the money through decisions made in her autumn budget and spring statement, which saw taxes raised by £40bn and cuts made to the welfare budget.

However, the Tories said the review “isn’t worth the paper it’s written on” and further tax hikes will be needed.

Shadow chancellor Sir Mel Stride said that “this is the spend-now, tax-later review”, adding Ms Reeves “knows she will need to come back here in the autumn with yet more taxes and a cruel summer of speculation awaits”.

The Liberal Democrats said the “smoke and mirrors” spending review would leave a black hole in social care as local government budgets remain at breaking point.

“Putting more money into the NHS without fixing social care is like pouring water into a leaky bucket,” said the party’s Treasury spokesperson Daisy Cooper.

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Is chancellor’s spending review the start of a ‘national renewal’ – or too good to be true?

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June 12, 2025

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Is chancellor's spending review the start of a 'national renewal' - or too good to be true?

If you sat through the entire spending review speech delivered by Rachel Reeves in the House of Commons, you might have been lulled into a sense that the UK was awash with a wealth of riches as the chancellor sprinkled billions across the land.

There were billions for social housing, nuclear power stations, rail lines and research and development to power the economy.

There was money for schools, the police, the NHS, and defence spending, as the chancellor sketched out her roadmap for Britain for years to come, with an acknowledgement that the government – and particularly this chancellor – had endured a difficult first year.

“We are renewing Britain. But I know that too many people in too many parts of our country are yet to feel it…the purpose of this spending review is to change that,” she said.

Politics Hub: Tap here for the latest news

There was £113bn of borrowing to fund capital investment and an extra £190bn over the course of the parliament for public services, fuelled by those contentious tax rises in the budget last autumn. This was a Labour chancellor turning her back on austerity.

“In place of decline, I choose investment. In place of retreat, I choose national renewal,” she said.

The chancellor deserves credit for the capital investment, which she hopes will unlock jobs and power economic growth. But when something sounds too good to be true, it normally is.

For me, former shadow chancellor John McDonnell hit the nail on the head on Wednesday night as he remarked rather wryly to me that “the greater the applause on the day, the greater the disappointment by the weekend”.

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Sky’s economics editor Ed Conway looks at the key takeaways from the spending review.

Could tax hikes be needed?

Because, in talking up the prospect of national renewal, the chancellor glossed over what the “hard choices” mean for all of us.

There are questions now swirling about where the cuts might fall in day-to-day budgets for those departments which are unprotected, with local government, the Home Office, the Foreign Office, and the Department for Environment all facing real-terms cuts.

My colleague Ed Conway, analysing the government figures, found cuts in the schools budget for the last two years of this parliament – the chancellor’s top line figure showed an overall rise of 0.6% over the five-year period of this Labour government.

There are questions too over whether council tax bills might be increased in order to top up local government and police budgets.

Ms Reeves told me in an interview after her speech that they won’t, but she has predicated increases in police funding and local government funding coming locally, rather than from central government, so I will be watching how that will play out.

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The chancellor tells Sky News council tax will not have to rise as a result of measures in her spending review.

Even with the increase in health spending – the NHS is getting a 3% boost in its annual budget – there are questions from health experts whether it will be enough for the government to hit a routine operations target of treating 92% of patients within 18 weeks.

My point is that this might not be – to again quote Mr McDonnell – “mathematical austerity”, but after over a decade where public dissatisfaction in public services has grown, the squeeze of day-to-day spending could make it hard for the chancellor to persuade working people this is a government delivering the change for them.

There is pressure to reverse some of the welfare cuts, and pressure to lift the two-child benefit cap, while the pressure to reverse the winter fuel allowance has already resulted in Reeves this week making a £1.25bn unfunded spending commitment (she will set out how she is paying for it at the next budget).

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Treasury minister refuses to rule out tax rises later this year.

Will voters feel the ‘renewal’?

Reeves told me on Wednesday there was no need for tax rises in the autumn because the spending envelope had already been set, and the money now divvied out. It’s a very live question as to whether that can hold if the economy weakens.

She did not rule out further tax rises when I asked her last week, while Treasury minister Emma Reynolds told my colleague Ali Fortescue on Wednesday night: “I’m not ruling it in, I’m not ruling it out.”

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The gamble is that, by investing in infrastructure and getting spades in the ground, and tilting limited public money into the NHS, the government can arrive at the next election with enough ‘proof points’ to persuade voters to stick with them for another five years.

On Wednesday, the chancellor laid the foundations she hopes will turn the government’s fortunes around. The risk is that voters won’t feel the same by the time they are asked to choose.

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Small boats intercepted for first time this month – as ‘15,000 migrants’ cross Channel so far in 2025

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June 12, 2025

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Small boats intercepted for first time this month - as '15,000 migrants' cross Channel so far in 2025

“Multiple” small boats have been intercepted in the English Channel by the Border Force for the first time this month.

It comes as the Conservatives said 15,000 migrants have now made the crossing so far in 2025, in the “worst year ever for small boat crossings so far”.

A record 14,812 people arrived in the first five months of the year, according to UK government figures.

Migrants are brought to shore in Dover, Kent on Wednesday. Pic: PA
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Migrants are brought to shore in Dover, Kent, on Wednesday. Pic: PA

This has also surpassed the highest total recorded for the first six months of a year, which was previously 13,489 on 30 June last year.

In 2024, the number of arrivals did not reach over 14,000 until 9 July (14,058).

Migrants wearing life jackets were seen being brought ashore from a Border Force vessel in Dover, Kent, on Wednesday morning.

A Maritime and Coastguard Agency spokesperson said the coastguard “coordinated multiple incidents involving small boats in the channel overnight” from Tuesday into Wednesday.

“HM Coastguard continues to monitor ongoing reports,” its statement added.

Migrants wear life jackets after being rescued from small boats in the Channel. Pic: PA
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Migrants wear life jackets after being rescued from small boats in the Channel. Pic: PA

Read more from Sky News:
Curfew in LA amid migrant protests
TikTok star leaves US over immigration probe

On Saturday 31 May, some 1,194 migrants arrived in the UK on 18 small boats, government figures revealed.

It was the highest number of arrivals in a single day – far surpassing the previous record of 825 set earlier in May.

Following the record number of arrivals on that Saturday, Defence Secretary John Healey told Sky News Britain has “lost control of its borders” over the past five years.

He told Sunday Morning With Trevor Phillips the previous Conservative government left the UK asylum system in “chaos”.

A rescue vessel heads towards Dover after picking up migrants travelling on small boats. Pic: PA
Image:
A rescue vessel heads towards Dover after picking up migrants travelling on small boats. Pic: PA

Recent Sky News analysis has shown that migrants are still arriving in considerable numbers on poor weather days – challenging the view that crossings only increase with an improvement in weather.

The data analysis revealed that more people are still making the journey on bad weather days than they were previously, with a rise of 30% compared to last year, and more than double compared to the year before.

Migrants who arrived on small boats walk off a rescue vessel in Dover, Kent. Pic: PA
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Migrants who arrived on small boats walk off a rescue vessel in Dover, Kent. Pic: PA

After vowing to crackdown on illegal immigration, the government is funding elite officers to increase patrols along the northern French coastline and launching a specialist intelligence unit in Dunkirk to track down people smugglers.

It has also established a Border Security Command to lead strategy, and its Border Security, Asylum and Immigration Bill, currently going through parliament, would introduce new criminal offences and hand counter-terror-style powers to law enforcement agencies to target smuggling gangs.

On Wednesday, Rachel Reeves promised funding of up to £280m more per year by the end of the spending review period in 2028-29 for the Border Security Command.

The chancellor also committed to end spending on hotels for asylum seekers by the next general election – which would be in 2029 at the latest, in a plan she said would save taxpayers £1bn a year.

In an attack on the Conservative legacy, she said: “The party opposite left behind a broken system: billions of pounds of taxpayers’ money spent on housing asylum seekers in hotels, leaving people in limbo and shunting the cost of failure onto local communities.

“We won’t let that stand.”

Following Wednesday’s arrivals, shadow home secretary Chris Philp said 15,000 migrants have now crossed the Channel in the “worst year ever for small boat crossings so far”, adding “this is a total collapse of border control”.

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