Where is the Manual for This?!

Plus: NPR digs into the SSI poverty trap; U.S. sees spike in disability discrimination complaints at school; and North Carolina may soon allocate SpEd funding based on need

Congratulations to Lenore for two years of her monthly cartoon on the crazy world of medical mama life! Kicking off year three, this edition is the origin story for the series’ name: Where is the Manual for This?! Lenore’s wit and creativity make me so proud to be part of this community of shared experiences. In reality, no doctor tells you all these truths when they hand you your baby — instead you figure it out one painful misstep at a time. Perhaps one day she and I will write the manual so future generations of medical mamas don’t have to feel so lost….

On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.

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Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Joseph Shapiro: “These disabled people tried to play by the rules. It cost them their federal benefits”

[…]For [Karen] Williams, the cash value of her [life insurance] policy along with the $260 she had saved in her checking account pushed her over [Supplemental Security Income]’s $2,000 limit on how much a recipient is allowed in savings and other assets.

That $2,000 asset limit hasn’t changed since 1989. If it had kept up over 51 years with inflation, it would be $10,000 today.

[…]The penalty was stiff: Williams was kicked off SSI, her primary source of income, and told by Social Security to pay back two years of benefits totaling $20,385.

She had 30 days to pay it back.

“The impact of it is just cruel,” says Kathleen Romig.

Romig recently went to work as a senior adviser to the commissioner of Social Security. She works on making programs like SSI fairer to children.

When NPR interviewed her last year, she wasn’t speaking for Social Security or SSI. She worked at a Washington think tank, the Center on Budget and Policy Priorities, as the director of Social Security and disability policy, where she wrote about raising SSI’s asset limit or ending it altogether.

“SSI is stuck in the past,” Romig said. “It’s hardly been changed over 50 years.”

[…] NPR interviewed roughly 200 people, including those who depend upon SSI, lawyers who help them, experts who study SSI and poverty, Social Security officials, staff and others. Among our findings:

• SSI’s asset limit and other rules are so out of date that many of the poorest Americans — who most need SSI — are excluded from the program.

• Largely because of the asset limit, SSI sends out benefit checks to impoverished beneficiaries, but then often, months or years later, tells them there’s been a mistake and that they need to pay back the money, which it calls “overpayments.”

• SSI’s asset limit and other rules impose a substantial “marriage penalty” on recipients, forcing many to skip marriage or lose benefits when they do marry.

• For many, the marriage penalty comes with even more calamitous results than losing a monthly benefit check. Many beneficiaries depend on the Medicaid eligibility that is automatic in most states for someone who qualifies for SSI, but then risk losing Medicaid if they marry.

• Social Security is not up to the task of administering such a complex system. After years of budget constraints imposed by Congress, it is understaffed and hurt by an antiquated computer system and the extreme administrative burden of calculating the asset limit and other SSI rules.

[…]“The system is so broken,” says [mom and SSI expert Stacey] Ramirez. “It can’t support itself, much less … the people who desperately need the support.”

• From DisabilityScoop: “Ed Department Sees Jump In Disability Discrimination Complaints In Schools”

Complaints of disability discrimination in the nation’s schools are at their highest level in six years, the U.S. Department of Education says.

A newly released annual report shows that the agency’s Office for Civil Rights received 6,749 complaints of disability discrimination during the 2023 fiscal year, which ran from October 2022 through September 2023. That’s up from 6,390 the year prior and is the largest number since 2017 when over 7,200 similar complaints were filed.

[…]“I think the increased number of complaints ties directly to the lack of oversight in the states for the implementation of the law,” said Denise Marshall, CEO of the Council of Parent Attorneys and Advocates, or COPAA, a nonprofit that advocates for the rights of students with disabilities and their families. “The fact that states are not holding districts accountable is not new. OCR investigating and issuing resolution agreements is, in my opinion, some of the only accountability happening, especially around segregation, harassment, equity and disability related discrimination.”

[…]The civil rights office said that its overall complaint volume has nearly tripled since 2009, but its staff has been reduced since that time. Disability and civil rights organizations have been pushing for increased funding for the office to ensure that it can appropriately handle the increased caseload.

• From WRAL News: “Proposal to revamp special education funding heads to NC lawmakers”

State education officials want to revamp how funding is distributed for students with disabilities — a move that they think could provide more and better-tailored services for students with developmental delays, learning disabilities, and intellectual and physical disabilities.

The North Carolina Department of Public Instruction [DPI], which oversees the state’s public schools, sent a proposal to state lawmakers in March that would fund special education based on the needs of the child, rather than the current practice: providing a uniform amount for every special education student, regardless of disability.

North Carolina currently provides districts with about $5,300 per disabled student — up to 13% of its enrollment.

In other words, if 10% of students had disabilities in a 10,000-student school district, the state would give the district about $5.3 million to fund services for those students. And each student with a disability would benefit from the maximum possible funding of about $5,300 per student, which pays for special education classrooms, tutoring, therapies and many other services and equipment.

But if 20% of the students in that district had disabilities, the state would only supply $6.9 million toward those services because of the 13% cap. That dilutes per-student spending to just under $3,500 — roughly one-third less than the maximum.

The vast majority of school systems are above the cap, along with many charter schools.

[…] Under the new proposal, education officials want to lift the cap and create various levels of need to enable more flexibility in funding across the state.

[…] Lawmakers are in the midst of the short legislative session, during which they focus on adjusting the state budget. Talks over how — or if — to spend a $1 billion surplus have stalled somewhat as leaders of both legislative chambers butt heads on spending priorities. And it’s unclear where special education funding lands on the wish list.

[…] DPI’s new proposal does away with the funding cap and creates three levels of needs for students with disabilities.

The first and lowest-cost level includes some therapy or other services, but the student can be placed in a general education classroom most of the time. The second tier includes more assistance, including a separate classroom sometimes. The third and most expensive tier includes separation from general education, all the way up to what the department calls “homebound” education — in which the school must deliver general and special education services to the home.

[…]It’s not yet clear what will happen next. Lawmakers appropriated $50,000 toward hiring a consultant to study special education funding in the 2021 budget. But lawmakers have ordered studies before and not acted upon the recommendations. […]

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