After 20 hard-charging years in banking and portfolio management, Todd Sensing realized something was missing. So he changed careers and became a financial planner.

Sensing, 45, launched FamilyVest, his financial advisory firm, in 2016. Focusing on family finances made business sense, but his deeper motivation hit closer to home.

Raising two sons on the autism spectrum led Sensing to appreciate the challenges that families with special needs face. Aside from long-range financial planning, they confront social, psychological and practical difficulties just getting through each day.

“Your kids look normal but they don’t act normal,” Sensing said. “That can create a lot of anxiety about going out in public.”

Sensing’s sons were born in 2001 and 2003. They were diagnosed at a young age, and Sensing initially maintained his self-described “Type A investment manager” personality. He even started and ran a hedge fund in 2007 called the Aardvark Market Neutral Fund.

Once his sons reached their teen years, Sensing wrestled with the mounting dissatisfaction of his working life. He wanted to apply his experience and knowledge as a parent with special needs children to help others in a similar situation.

“When you’re raising kids with autism, even thinking about long-term financial planning is tough,” said Sensing, a certified financial planner in Miramar Beach, Fla. “You’ve got a full plate. There’s lots of room for error.”

When he was a number-crunching asset manager, Sensing mastered financial instruments but admits that he had little use for “the softer side like communication and empathy.” His perspective changed as his young sons struggled and he developed patience and listening skills, “since planning for a child with special needs isn’t just about numbers.”

As a guest on the “Your Money” radio show hosted by Kent Smetters, Sensing fielded a call from a father who was raising children on the autism spectrum. Sensing suggested financial tools such as ABLE accounts (tax-advantaged savings accounts for families with disabilities) and shared other tax strategies.

“I started to sense what I was saying wasn’t aligned with what the caller was asking,” Sensing recalled. “He was speaking as a stressed parent worried about what was going to happen to his child after he was gone. He didn’t want to know about possible tax savings because that’s not where he was yet.”

Reflecting on the call, Sensing wishes he had said, “You’re not alone. There are ways to solve the problems you face, protect your children’s future and help them achieve the goals and dreams you have for them.”

Upon launching his advisory firm, Sensing set out to understand each client’s plight. From experience, he knew that parents with special-needs children benefit by confiding in attentive, caring experts who listen intently rather than rush to dish out advice.

“I used to jump to a conclusion instead of listening with a clean slate,” he said. “You want to show off your technical expertise. But now I’m more focused on helping people move forward by understanding them first and speaking their language.”

That’s particularly important when he meets parents dealing with autism at home. He knows it’s tempting to become a recluse because of the social anxiety that can arise when the family dines out or shops at the mall.

During client meetings, Sensing has learned to paraphrase what he hears to confirm he’s captured the message accurately. He also weaves in his experience — the fears, frustrations and joys of raising his sons — to strengthen his connection with clients.

“My boys,” he said, “have taught me more about patience and love than anyone could.”

By Shaun Heasley via Disability Scoop

Housing prices across the country are far outpacing the monthly benefits provided by Supplemental Security Income, according to a new report, forcing many people with disabilities into homelessness or costly institutional care.

The national average rent for a one-bedroom apartment in 2016 exceeded the entire typical SSI check of $763 per month, while a studio or efficiency unit accounted for 99 percent of that payment.

What’s more, in the 13 states and Washington, D.C. where housing prices are highest, individuals with disabilities could not even cover the average cost of the smallest apartments with their SSI benefits.

The findings come from a report out this week from the Technical Assistance Collaborative and the Consortium for Citizens with Disabilities’ Housing Task Force. It’s based on U.S. Department of Housing and Urban Development data on rental costs for 2016 and information from the Social Security Administration on SSI benefits.

“Housing is a challenge for most of us; it’s a crisis for individuals on SSI,” said Kevin Martone, executive director of the Technical Assistance Collaborative. “Nowhere in the United States can people with disabilities receiving SSI afford a safe, decent place to live.”

About 4.8 million adults with disabilities received SSI in 2016. With these benefits falling short of housing prices, an estimated 87,000 people with significant disabilities were homeless and between 200,000 and 300,000 people with disabilities were living in institutions, nursing facilities and other segregated environments, the report found.

Meanwhile, over 870,000 people with developmental disabilities were estimated to be residing with caregivers age 60 or older.

“Taxpayer resources are spent exponentially on the costs associated with institutionalization and homelessness even though proven, cost-effective solutions exist,” Martone said. “We need our policymakers to finally confront this issue and work in a bipartisan fashion to address this form of discrimination against those who are the most vulnerable.”

FOR IMMEDIATE RELEASE
December 20, 2017

Contact:

Center for Medicare Advocacy – Matt Shepard: 860-456-7790, mshepard@MedicareAdvocacy.org
Medicare Rights Center – Mitchell Clark: 212-204-6286, mclark@medicarerights.org

Statement from
The Center for Medicare Advocacy and The Medicare Rights Center On Passage of Devastating Tax Bill

Washington, DC – Today’s passage of the Tax Cut bill puts the 57 million older adults and people with disabilities who rely on Medicare, and their families, at risk.

Medicare faces both short, and longer-term, threats as a result of this Bill. Almost immediately, budget rules triggered by the tax bill will require automatic and ongoing cuts to Medicare, starting with $25 billion in 2018 alone. While Congress may prevent this from happening, such action won’t “fix” this catastrophically damaging bill. The massive tax give-away will still result in a gaping revenue shortfall of $1.5 trillion or more, putting Medicaid, Medicare, and Social Security directly in the cross-hairs of policy-makers seeking to pay for the tax cuts.

Congressional leaders have been clear – after passing a costly tax bill that drives up deficits, they will use these higher deficits to justify cuts to programs like Medicare. As organizations concerned about access to affordable, quality health care and long-term services and supports for older people, people with disabilities, and their families, we will continue to fight for Medicare and the health and well-being of everyday Americans.

Congress: We, and the tens of millions of people we represent, are watching. We will hold you accountable.

###

The Center for Medicare Advocacy (http://www.medicareadvocacy.org) is a national, nonprofit, non-partisan law organization that works to advance access to comprehensive Medicare coverage and quality health care for older people and people with disabilities through legal analysis, education, and advocacy.

The Medicare Rights Center (www.medicarerights.org) is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs, and public policy initiatives.

Courtesy of the Center for Medicare Advocacy

A New Jersey appeals court upholds the state’s denial of Medicaid benefits to an applicant because the applicant did not provide the necessary verifications, rejecting the administrative law judge’s decision that the case must be decided on its merits. P.B. v. Division of Medical Assistance and Health Services (N.J. Super. Ct., App. Div., No. A-5405-15T2, Dec. 8, 2017).

P.B.’s daughter filed a Medicaid application on her behalf. The Medicaid agency requested additional information about P.B.’s bank accounts, life insurance, and housing. P.B.’s daughter did not provide this information, and the Medicaid agency denied P.B. benefits.

P.B.’s daughter appealed on P.B.’s behalf. After a hearing, the administrative law judge (ALJ) remanded the case to the Medicaid agency to work on getting the required information, ruling that the case must be decided on the merits unless P.B.’s daughter failed to cooperate without good cause. The state rejected the ALJ’s decision and upheld the decision to deny benefits. P.B.’s daughter appealed to court, arguing that the Medicaid agency failed to assist her with the application.

The New Jersey Superior Court, Appellate Division, affirms the state’s denial of Medicaid benefits. According to the court, P.B.’s daughter did not provide any evidence to show why she couldn’t comply with the state’s request for additional verifications, so the state properly denied P.B. benefits.

For the full text of this decision, go to: http://www.njcourts.gov/attorneys/assets/opinions/appellate/unpublished/a5405-15.pdf

Ron Fleming is 74 now, but he’s spent most of his life trying to recapture what life felt like when he was 21, fighting in Vietnam.

Fleming was a door gunner in the war, hanging out of a helicopter on a strap with a machine gun in his hands. He fought in the Tet Offensive of 1968, sometimes for 40 hours straight, firing 6,000 rounds a minute. But he never gave much thought to catching a bullet himself.

“At 21, you’re bulletproof,” he says, as he sits on the edge of his hospital bed at the San Francisco VA Medical Center. “Dying wasn’t on the agenda.”

Now it is. Fleming has congestive heart failure and arthritis, and his asthma attacks often land him in the hospital. Ten years ago, he was diagnosed with post-traumatic stress disorder, which makes him quick to anger and hyper-vigilant, as though he’s still in that helicopter.

Fleming’s physical and mental health symptoms, combined with his military history, are a challenge to the VA’s palliative care team, which is coordinating his care as his health deteriorates. It is a challenge they are facing more often as Vietnam veterans age and develop life-threatening illnesses.

For some veterans, the stoicism they relied on in battle returns full-force in the hospital; they’re less willing than other patients to admit they are afraid or in pain, and less willing to accept treatment. Other vets with PTSD are even more reluctant to take pain-relieving opioids because the drugs can actually make their symptoms worse, triggering frightening flashbacks.

About 30 percent of Vietnam vets have had PTSD in their lifetime, the highest rate among veteran groups from all eras, according to the U.S. Department of Veterans Affairs’ National Center for PTSD. Their rate is higher, according to numerous studies, because of the unique combat conditions they faced and the negative reception many received when they returned home.

Since the war, many vets have developed coping strategies to keep disturbing memories and other PTSD symptoms at bay. But facing a terminal illness — the severe pain of cancer, the nausea of chemotherapy or the breathlessness of heart failure — can drain their energy so much that they’re unable to maintain their mental defenses. Vets previously diagnosed with PTSD can slip out of remission, and some may experience the condition for the first time.

“They’re so distracted trying to cope with their physical symptoms that they might have flashbacks,” says Dr. VJ Periyakoil, a palliative care physician at the VA Palo Alto Health Care Center and director of palliative care education at Stanford University. “War memories start coming back; they start having nightmares.”

Gasping for breath can induce panic for anyone, but it can make vets feel as threatened as they did in a combat zone, says Dr. Eric Widera, director of hospice and palliative care at the San Francisco VA and professor of geriatrics at the University of California, San Francisco.

That’s what happens to navy vet Earl Borges, who logged 240 24-hour river patrols in Vietnam with three other men in a plastic boat, constantly watching the riverside brush for enemy soldiers.

Ever since, he’s been easily startled by loud noises and fast-moving shadows. Now, at age 70, Borges has Lou Gehrig’s disease – the progressive disease of motor neurons that is also called amyotrophic lateral sclerosis, or ALS — and chronic obstructive pulmonary disease, which can intensify the anxiety from his PTSD.

If he lies down without his breathing machine, he says, he panics, then hyperventilates.

“I have to talk him through it, tell him he’s OK, ‘just breathe,’ ” says his wife, Shirley Borges, 67.

They both say Earl’s PTSD is under control — as long as he doesn’t talk about the war — and his ALS is progressing very slowly, without pain.

But for patients who are in severe pain, the go-to treatment is opioids, which can also make PTSD symptoms worse. This forces vets to choose between physical pain and mental anguish.

“Oftentimes, pain medications like morphine or oxycodone make some people feel a little bit fuzzy,” Widera says. “That may contribute to that feeling of a loss of control.”

That’s why Periyakoil isn’t surprised when vets refuse pain medications.

” ‘Don’t you try and give me none of those narc pills, doc,’ ” she recalls one of her patients saying while he grimaced in pain.

Some vets also refuse medication because they feel like they deserve the pain.

“We see a lot of feelings of guilt over what they’ve seen and done during their experience in Vietnam,” Widera says, “and they don’t want to blunt that.”

At the end of life, this sense of guilt can be amplified as veterans look back and review their lives and, perhaps, contemplate the consequences of their actions in the line of duty. This is even true for vets like Fleming, whose overriding feeling about his service is pride.

“Sometimes I think that now I’m being paid back for all the men I killed,” he says. “And I killed a lot of them. Fleming says he has not needed opioids for his condition, and has declined other medications.

“If there is a judge, I figure I’m going to hell in a hand-basket,” he says.

Watching vets choose to endure their pain can be hard for families, as well as for palliative care doctors and nurses. Just like soldiers, doctors hate doing nothing.

“Staff [members] suffer terribly because they feel like, ‘what good are the hospice experts if we can’t take care of patients’ pain?’ ” Periyakoil says.

Often, the only thing they can do is stand back and respect a veteran’s choice to bear their pain, she says.

Once, when Periyakoil was dressing the ulcer wounds of the patient who refused what he called “narc pills,” he began talking about the war. She didn’t press him, just kept working quietly, tending his wounds. As he stared at the ceiling, wincing, he confided in her about a time he was forced to kill a pregnant teenager.

But this kind of revelation is unusual, she says. With weeks or months left to live, after a lifetime of silence about their most horrifying memories, there often isn’t enough time for veterans to talk about those experiences at all.

That’s one reason the VA has been trying to start end-of-life care earlier, Widera says — to address veterans’ PTSD or moral distress years before they land in hospice.

Fleming’s doctors, for instance, have urged him to consider mental health counseling or antidepressants. He refuses.

“I don’t want to take psychiatric drugs,” he says. “The vets call them ‘the happy pills.’ I don’t want any of those, because they change you. I don’t want to change.”

The emotional pain connects Fleming to his past.

He was awarded 18 Air Medals for meritorious acts and heroism in flight. The loss and grief he experienced in Vietnam are woven into those memories of victory and glory.

“You see all the combat. There’s a charge to it,” he says. “And after a while, it bites you right in the ass. And once you’ve been bit, you’re bit for life. Nothing else works.”

Courtesy of April Dembowski via Kaiser Health News