Posted on December 20, 2019
To go from her second-story bedroom to her second-story bathroom, Christine Hoag had to crawl. The bathroom doorframe was not wide enough for her wheelchair to fit through, the hall was too narrow for her chair to turn around and the bathroom itself was so cramped she could barely move between the tub and toilet.
“It felt like I had lost every shred of my dignity,” she says. She also, because of the crawling, had suffered multiple back injuries.
Hoag has Shy-Drager syndrome, a nervous system disorder with symptoms that resemble Parkinson’s disease. A related condition causes low blood pressure and tachycardia, which can produce lightheadedness and put her at risk of falling every time she transitions from sitting to standing. For a proudly independent entrepreneur who once founded her own home care company, the prospect of moving to a nursing home was not appealing. “I want to stay in my home,” she told me, and “have a nice quality of life as long as I’m here.”
I met Christine Hoag the day her home – a rowhouse that had not seen a renovation since its construction in 1944 – started to change. Contractors who specialize in home accessibility modifications were setting up to widen her bathroom door frame, replace her bathtub with an accessible shower stall and rotate her toilet to maximize the space in the middle of the room.
The money for these modifications came from the Nowhere Else to Turn program, offered by CDS’s Delaware Assistive Technology Initiative. Funded by a grant from the Christopher and Dana Reeve Foundation, Nowhere Else To Turn provides financial support to Delawareans with paralysis- and weakness-causing conditions whose requests for home modifications have been denied by other funding organizations.
I was in Hoag’s house because Nowhere Else to Turn also seeks to raise awareness. Many residential buildings were not (and still are not) designed with accessibility in mind, forcing prospective homeowners with mobility limitations either to look elsewhere or find the money to pay for modifications.
Or, to opt for Door Number Three and move into the residence even though they can’t afford any alterations. Too many Delawareans have been forced to choose this option.
The existing funding options for people with financial difficulties can only help a tiny percentage of this population. I spoke to the director of one organization that helps people with paralysis pay for home mods. I was curious why I didn’t see their advertising anywhere – no information on the funding availability, no application forms, no number to call.
“If it was widely known this program existed, we’d be flooded with requests,” the director told me. They would either have to spread their money so thin that everyone received a trivial payout or they would have to turn almost everyone down.
“And that would break our hearts,” she said.
Programs like Nowhere Else To Turn shouldn’t have to exist. People with mobility limitations shouldn’t have to choose between buying a home and living with independence and dignity. Rather, homebuilders should construct residences with doorframes a few inches wider. They should make sure halls are wide enough for a wheelchair to turn around. They should put light switches low enough for users to reach from a sitting position. That’s another point Nowhere Else to Turn is making: it wants to draw attention to the overwhelming need for accessible housing and the utter ease with which many common accessibility problems can be eliminated.
Several months after her home modifications were complete, Christine Hoag called me. The change in her voice was astonishing – I heard an ease, a lightness that was completely new.
“It’s just changed my life,” she told me. “Things have been so much better.”
That shouldn’t have to be such a rare and special joy.
Posted on January 10, 2019
You probably didn’t see them. Too few people did. News stories about thousands of people with disabilities facing life-or-death situations.
One reported that more than 10,000 people died waiting to hear the result of their Social Security Disability Insurance appeal in 2017. The other revealed that Delawareans with disabilities who rely on Supplemental Security Income can’t afford the rent on an average one-bedroom apartment.
Unfortunately, the stories appeared during the holiday rush. Bad timing. But you also likely didn’t see them because too few press outlets chose to give the topics the time of day. Then as now, the press was more interested in devoting space daily to Democrats taking control of the House, the government shutdown and the volatile stock market – important stories, surely, stories the media considers mainstream. Yet they also gave space, and plenty of it, to stories involving Meghan Markle and Lady Gaga, the weather, and, dare I say it and lose local readers of this post, the Eagles’ chances of making the playoffs.
But aren’t stories affecting people with disabilities – some 20 percent of the population (factor in family members, friends and colleagues of people with disabilities and you’re likely looking at a majority of Americans) – considered mainstream enough for the media to merit coverage?
Apparently, not yet. Look around. Listen to what former Delaware Attorney General Matt Denn said at a recent policy forum. “The questions have to get asked,” he said, noting that Americans with disabilities never seem to get much airtime. Or look at candidate debates. Contestants for president in the last election cycle almost never got asked questions about disability by the press.
Look around. Listen. Asking questions: isn’t that the media’s job?
Posted on December 10, 2018
People with disabilities and their supporters protesting proposed Medicaid spending cuts in Washington, D.C. (AP/Rogelio V. Solis)
With the midterm elections behind us, disability advocates face an opportunity to make significant legislative gains.
The conventional wisdom holds that gridlock will dominate the 116th U.S. Congress, which begins in January 2019. With a GOP majority in the Senate and a Democrat-controlled House of Representatives, both parties are poised to block each other’s most polarizing bills. But because there will likely be little movement on contentious agenda items, space will open up for other issues to come to the fore. The disability community is uniquely poised to take advantage.
Many disability-related policies were not only front and center in the midterm elections – several unified Democratic and Republican voters.
The Kaiser Family Foundation found in September that three-quarters of Americans said it is “very important that protections for pre-existing conditions remain law,” including majorities of Democrats (86 percent agreed), Independents (75 percent) and Republicans (58 percent). Public support for pre-existing conditions was so overwhelming that Republicans who previously sought to eliminate them tried obscuring or recasting their records.
Bipartisan majorities in three conservative states, Utah, Nebraska and Idaho, also voted to expand Medicaid eligibility. Typically seen as a liberal policy, Medicaid expansion far outperformed liberal candidates in all three states, which is to say, it secured a lot of conservative votes too.
Along with public sentiment, disability activists have mobilized like seldom before, and their current agenda, with its emphasis on dignity, independence and self-sufficiency, combines strong Democratic backing with fundamentally conservative principles that could win over Republicans.
Many of the disability community’s highest priorities already have bipartisan support. The Transitioning to Integrated and Meaningful Employment (TIME) Act, for example, would end the federal loophole allowing certain companies to pay employees with disabilities subminimum wage, instead channeling those individuals toward competitive jobs in the labor market. The ABLE Age Adjustment Act would allow more people with disabilities and their families to prepare for the future by saving money. The Disability Integration Act (DIA), Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources and Care (EMPOWER Care) Act and Lifespan Respite Care Act all seek to offset the high costs of home- and community-based health care – which, apart from enabling people with disabilities to participate in their communities, saves the government a lot of money.
Advancing disability legislation gives politicians the chance to cooperate across the aisle and pass popular bills. It also gives people in the disability community the chance to tangibly improve their quality of life. And there will may never be a better time to pursue it than now.
Posted on July 10, 2018
Legislative Hall in Dover, Del.
When the price tag was under $1 million, the 2017–2018 Delaware General Assembly overwhelmingly approved bills that should benefit the disability community.
Delawareans with disabilities no longer will face discrimination in organ transplant determinations. School resource officers will be trained to use de-escalation, not restraint and seclusion, as a disciplinary technique. State health services won’t be able to “claw back” funds from ABLE accounts upon the beneficiary’s death.
The Legislature also started a program to forgive as much as $10,000 in student loans for educators in short-staffed fields, including special education. And with a growing population of students diagnosed with autism, lawmakers created positions for autism specialists who will offer training and assistance in schools across Delaware. The new Delaware Advance Scholarship Program will reduce tuition costs for students with intellectual disabilities attending college.
When a bill’s price tag topped $1 million, though, state lawmakers stepped forward, rocked backward, or stood still.
Case In Point I: Lawmakers made space in the budget for a one-time $2.9 million payment for K–3 basic special education. Bravo, so far as it goes. Schools will be able to hire and train critically-needed educators. But a bill to make the funding permanent died in committee. Missed opportunity.
Nobel Prize-winning economist James Heckman estimates every dollar invested in early education and intervention results in $7–$10 saved. It stems from the positive impact on the health, communication skills, cognitive development and social/emotional development of children with developmental disabilities. These children use fewer health and special education services. They are less likely to engage in criminal behavior. They have more success finding jobs. The state, in turn, spends less on education, health care and corrections while bringing in more tax revenue.
Case In Point II: Lawmakers appeared enthusiastic early on in their consideration of the Michael McNesby Act. The act phases in higher reimbursement rates to care providers for adults with I/DD, aiming to increase wages for direct support professionals (DSPs).
However, a late amendment added that payments would be “subject to available funding.” Disability advocates had asked for $9 million in fiscal year 2019, but the Joint Finance Committee decided on $4.7 million. Progress, but a paucity of progress.
Reports from the U.S. Department of Health and Human Services in 2006 and the President’s Committee for People with Intellectual Disabilities in 2017 agree that raising DSP wages leads to improved health outcomes. It reduces the staff turnover and vacancy rate, which lightens each DSP’s workload. With more DSPs providing individualized care, adults with intellectual and developmental disabilities would need to rely less on other state health services. Moreover, DSPs—who currently have some of the highest injury and illness rates of all professions—would experience less physical and mental stress. The state would also spend less on health care and take in more tax revenue.
To their credit, Delaware lawmakers embraced much-needed disability legislation. They hesitated, however, to open the wallet wide enough to add other needed supports, despite the soundness of the investment. When, next year, similar opportunities present themselves, will they balk in the face of multi-million dollar costs or exhibit fiscal and social prudence?