Advocates: Disabled take huge hit under GOP health reform

Advocates for the disabled say the House Republican plan to replace the Affordable Care Act seriously threatens some of the most vulnerable Americans.

The website DisabilityScoop reports that advocates say the bill threatens home- and community-based services and other supports that people with developmental disabilities rely upon.

Photo: Joshua Zader/Creative Commons

“The American Health Care Act shows callous and dangerous disregard for the well-being of people with disabilities and their families and erases decades of progress,” said Peter Berns, CEO of The Arc, an organization that service people with intellectual and physical disabilities.

The House passed the bill 217 to 213, allowing President Donald Trump and Republicans to do a victory lap that they had finally succeeded in destroying Obamacare. The measure though was roundly criticized by doctors, hospital and senior groups. It must still pass the U.S. Senate, which gave it a lukewarm response and promised to address its more draconian measures.

While the disabled take a hit, the most wealthiest Americans are big winners with the new legislation as it delivers a big tax cut the would redistribute billions of dollars to the upper tier.

 

How does it hurt the disabled? The many groups who represent them say the bill would institute a per capita cap for Medicaid. This means the federal government would offer a fixed amount of money for each beneficiary.

“These huge cuts and caps will likely put pressure on states to cut home- and community-based waiver services, especially those that are ‘optional,’ like personal care services and therapies,” said Kim Musheno, chair of the Consortium for Citizens with Disabilities, a coalition of disability advocacy groups.

Schools also would be affected by the Medicaid shift because they are currently able to seek reimbursement for a variety of services provided to disabled children to a tune of $4 billion annually. That means money to reimburse schools for speech and occupational therapy, specialized playground equipment, and even wheelchairs is now in jeopardy.

Advocates for the disabled say House Republicans would allow states to no longer consider schools as eligible Medicaid providers.

To read all of the story by DisabilityScoop click here.

 

Ill Iranian boy can’t get to West Palm Beach for treatment after Trump’s ban

Nearly three years ago, President  Donald Trump posted on Facebook photos of himself with two children at Mar-a-Lago. The little children were patients of The Paley Orthopedic and Spine Institute in West Palm Beach. Both sported high-tech braces on their legs.

“We love helping the kids — nothing is more important,” Trump said in the post.

Yet, swept up in the wake of Trump’s immigration travel ban for seven Muslim-majority countries are children trying to get into the United States for life-and-death medical care.

A 4-month-old Iranian girl needing heart surgery was temporarily banned from traveling to Oregon for surgery.

Now, there is a 12-year-old patient of the Paley Institute who is in limbo in Iran. He also seems to be caught up in hospital politics for the institute. which is on the campus of St. Mary’s Medical Center, owned by Tenet Healthcare.

Tenet does not want the story about Mohammad Aref Zarezadeh out even when his delay may have nothing to do with Trump’s controversial travel ban that has been delayed by the courts.

Paley wrote to U.S. Sen. Elizabeth Warren’s office on Friday, saying the boy has a serious birth defect of congenital femoral deficiency.

Currently, the boy has a leg lengthening device with external pins going through skin and bone. He was scheduled for surgery on Feb. 16 and any delay in removing the device could cause infection.

“We were waiting for them to get a visa when this most recent ban was announced last week,” Paley wrote to two aides in the Democratic senator’s office.

Sources in Washington told The Palm Beach Post that visas for the boy and his mother were delayed because some of the problems with the documents the family submitted.

Whether the travel ban did play a role in the boy’s delay remains a mystery. Mother and son have traveled on medical visas in the past for treatment and surgery by Dr. Dror Paley.

Paley also reached out to U.S. Rep. Lois Frankel of West Palm Beach.

The Post received information that Tenet’s lobbyists were in contact with Speaker of the House Paul Ryan.

In an e-mail to Dr. Paley, the father of boy — Ali Zarezdeh — said the family had an interview in Dubai on Nov. 13.

“Exactly, when we sent the passports (Aref and his mother) to stamping the visa by agency, the ban was announced,” the father wrote on Friday. “Unfortunately, three days ago their passports returned without visa.”

Trump’s Jan. 27 executive order halted all refugee admissions for 120 days and imposed a 90-day ban on visitors from Iraq, Iran, Syria, Libya, Sudan, Somalia and Yemen.  A federal judge has temporarily frozen all enforcement of the order’s key parts.

The quandary for his patient may have left Dr. Paley in the awkward position of taking on Trump in the name of his patient. Paley is renowned for his leg-lengthening techniques. In many instances, he is able to save the limb of a child that would have otherwise been amputated.

In that same 2013 posting on Facebook, Paley sits next to Trump and Dr. Ben Carson, the former presidential candidate who is now Trump’s  secretary for the Department of Housing and Urban Development.

In December 2013,  a fundraiser was held at Trump’s Mar-a-Lago that benefited The Paley Institute and Carson Scholar Fund.

Paley responded to an e-mail by The Post inquiring about Aref by asking the newspaper not to report on his patient but he would not say why. “I think we are making headway through some connections via some of our legislators. I am awaiting to hear if the family gets a visa,” he wrote.

In an e-mail obtained by The Post, a Tenet spokesman tells the boy’s mother, Azadeh, not to speak to the press.

“We understand that a reporter from a newspaper in Florida, The Palm Beach Post, has learned about your situation,” writes Dan Waldmann, senior vice president for public affairs for Tenet.

“We do not believe it would be beneficial for Aref’s story to be published in the media before the visas have received and he is in the United States.”

He tells the mother if she is contacted by anyone in the media to not respond and to let Tenet know immediately.

The mother did respond, though, to The Post, saying in an e-mail that she had sent passports for herself and her son to Dubai for a stamping visa two days ago.

“The agency told us the process will take 10 to 15 days,” Zarezadeh “Our main problem is the visa and how responsive will be the staffs of Dubai embassy.”

081111 (Richard Graulich/The Palm Beach Post) West Palm Beach - Towards the end of the surgery, a fixator is assembled on the newly lengthened leg of Demi Reilly at the Paley Advanced Limb Lengthening Institute at at St. Mary's Medical Center Thursday.
A  fixator –similar to the one on the leg of Mohammed Aref Zarezadeh  — is shown in a photo by Post photographer Richard Graulich at The Paley Institute.

Waldmann told the family in his e-mail that Tenet is working on expediting the process but there are no guarantees.

“There are a large number of individual cases for which special assistance is being requested, many of which are being handled by the embassy in Dubai,” he said. “As a result, I can’t provide any assurance that we will be able to get the expedited handling, but we will try.”

Time is ticking for Aref, though.

In a December e-mail to Paley from his father, Ali, he said “Aref has some pain and discharge around his pins. What should he do?”

Doctors want galas moved from Trump’s Mar-a-Lago

Doctors are calling for their charitable galas in Palm Beach to be moved from President Donald Trump’s Mar-a-Lago estate — which is also serving as the winter White House presently.

The news comes on a planned protest at Mar-a-Lago on Saturday when Trump attends the International Red Cross 2017 ball.

It is the height of the ball season on the tony island where the rich and philanthropic don their finery and attend charitable events. And since location is everything, these galas are often either held at Mar-a-Lago or The Breakers resort.

Mar-a-Lago will become the "winter White House" when President Donald Trump returns to Palm Beach as the 45th President of the United States. The front of Mar-a-Lago, January, 31, 2017 in Palm Beach. (Greg Lovett / The Palm Beach Post)
Mar-a-Lago will become the “winter White House” when President Donald Trump returns to Palm Beach as the 45th President of the United States.

The historic Mar-a-Lago Club boasts an 800-seat ballroom and ocean views.

But now throngs of medical professionals are calling on Cleveland Clinic hospitals to cut their ties to Trump in light of the president’s executive order temporarily banning people from seven Muslim-majority countries from entering the U.S.

In a story in The Washington Post today, doctors, nurses and students have signed an open letter pleading with the clinic to condemn the Trump policy and to cancel a fundraiser set for this month at the resort.

More than 1,000 people have also signed a petition demanding a change of venue for the Massachusetts-based Dana-Farber Cancer Institute to cancel or relocate another lavish fundraiser planned for later this month.

It is reported the donors are paying between $1,250 and $100,00o to attend the Dana-Farber event scheduled for Feb. 18.

Dana-Farberr president Laurie H. Glimcher has refused to cancel the fundraiser, saying it was too late to call off the event, according to the Boston Globe.

123116 PBDN Meghan McCarthy Guests dance during the New Year's Eve Celebration at Mar-a-Lago Club.
uests dance during the New Year’s Eve Celebration at Mar-a-Lago Club.

Doctors were lobbying the Cleveland Clinic to cut ties with Trump after a resident at the clinic was denied entry to the U.S. under the president’s executive order. The hospital is trying to get the safe return of the employee.

The Cleveland Clinic says, as well, that it is too late to cancel its ball, but the Ohio-based academic hospital said it would not commit to using the same location for next year’s event.”

The Red Cross ball is the hallmark of the Palm Beach social season and is almost always at Mar-a-Lago.

The Red Cross has not yet signed a contract with a venue for next year’s event, according to a story in Business Insider.

A permit for the Red Cross’s 2016 gala, obtained by The Associated Press, says 500 people were expected to attend. Red Cross estimated the event would raise $925,000 and cost about $400,000 to put on.

The permit also noted a $20,000 in-kind donation — meaning that is what Mar-a-Lago would have charged the Red Cross.

In 2015, according to the same permit, the gala and another Palm Beach event together raised $1.75 million and cost $800,000.

If events are canceled at Mar-a-Lago that would impact Trump’s pocketbook.

This week the department chain Nordstrom announced it no longer working with Ivanka Trump for the fall season and is reducing the amount of Trump merchandise stocked.