The Affordable Care Act of 2010 required establishing minimum data collection standards for disability status as well as for race, ethnicity, sex and primary language in all national population health surveys. This requirement ensures that these marginalized groups are counted and reported in national data; however, the minimum standards don't allow for ready identification of persons with IDD within the disability group.

Recent changes to two national surveillance systems—National Health Interview Survey and the Survey on Income and Program Participation—eliminated questions that have been used to identify adults with IDD.

"Without specific questions that allow for ready identification of respondents with IDD, this population becomes invisible in the data," said Havercamp.

Read the full article here

As of this time last year, NIH funding for Down syndrome stood at $36.8 million.

Continued

In addition to finding that the Department of Justice did not have standing, a lower-court judge in 2017 ruled against the group of plaintiffs because of changes Florida made in the Medicaid program. Senior U.S. District Judge William Zloch approved recommendations from a magistrate who wrote that the plaintiffs could no longer show they were in danger of being denied medically necessary private-duty nursing services — a key issue in the case — or that they were at risk of institutionalization.

That ruling against the plaintiffs was upheld in April by the same panel of the 11th U.S. Circuit Court of Appeals that issued Tuesday’s decision. But the question of whether the Department of Justice had the legal authority to sue the state over compliance with part of the Americans with Disabilities Act remained unresolved.

The panel’s majority issued a 58-page ruling Tuesday that reversed the lower-court decision and backed the Department of Justice’s ability to file lawsuits under what is known as Title II of the Americans with Disabilities Act. The majority pointed to other laws that had been incorporated into that part of the Americans with Disabilities Act and that allow the Department of Justice to pursue lawsuits.

Continued

Autism advocates expressed shock Tuesday that their navigator program had been defunded by the stroke of the Democratic governor's veto pen as part of $947 million in spending she axed through 147 line-item vetoes in a budgetary standoff with the Republican-controlled Legislature.

"It's definitely a bit of a slap in the face. But we try not to look at it that way," said Colleen Allen, president and CEO of the Autism Alliance for Michigan. "I just don't know why she would use people with autism as leverage in a budget fight."

Elimination of the grant may lead to the program's demise, Allen said.

"This essentially disconnects families from their lifeline to support services and consultation," Allen said. "This is a complex disorder and families often do not know where to go."

Read the full article here

“So if you joined our system in 1992, you got your rate set by what the provider said it was going to cost you in 1992,” Missouri Division of Developmental Disabilities Director Val Huhn said.

These rates typically didn’t keep up with inflation, creating a disparity. For example, a provider that started in 2010 would have a higher reimbursement rate than an older provider.

In 2013, the division started reimbursing agencies based on a 1-7 rank for the level of support someone needed. Someone with a score of one might be fairly independent and just need reminders to take medications or help cooking, Huhn said, while someone with a score of seven might run away frequently or have aggressive behaviors.

This way of reimbursing agencies applied to all new people entering the system, but the state didn’t have the roughly $80 million needed to adjust rates for the people already in the system.

 A 2018 analysis by the Kansas City provider Center for Developmentally Disabled showed 325 different rates across the state for people with a score of one.

Read the full article here

“I think they did listen to what we had to say,” said Ven Sequenzia Jr., who had argued against managed care with hundreds of other advocates at a public comment meeting in July. Noting that the 105-page plan would still need more review, he said he was “cautiously optimistic.”

But the proposed caps on some services had others concerned that the recommended changes could curtail the access some people with disabilities have to their communities.

Some clients depend heavily on programs like supported employment to work outside their homes, said advocate Karen Clay.

“It’s not even about the money,” she said. “It’s about the fact they can go out into the community and do that and be wage-earning, tax-paying citizens.”

More than 34,500 people with developmental disabilities — such as mental disabilities, cerebral palsy, autism and Down syndrome — rely on the program, with 21,900 others on the waiting list.

Read the full article here

The disability services system is at a crossroads”, explains Rick Rollens, an expert in disability services and costs. Indeed, this fall task forces are being launched in several states, including California, to identify how disability services might be delivered differently in the future. 

The closing of the large state institutions for adults with developmental differences was envisioned to usher in a new era of inclusion and community services, and one that would be financially sustainable. What happened and where does the system go from here?

Continued

As part of the settlement, the State Office for People With Developmental Disabilities also agreed to take the extraordinary step of surrendering control of the facility to a private nonprofit agency that will oversee the residents’ care using its own employees — a provision the plaintiffs insisted upon, their lead lawyer, Ilann M. Maazel, said.

“We lost all faith that the agency can run this house effectively,” Mr. Maazel said. “The most important thing the families want is for their loved ones to be safe, and they had no confidence that the state would keep them safe.”

Continued

The work paid little, but the amount seemed fair in terms of Matt’s ability, Humphrey said. Now, Matt has neither that income nor intangibles of greater value – “benefits.”

“He doesn’t have the social interaction, he doesn’t get out of the house as much, he doesn’t take whatever pride he must have experienced in cleaning TV remotes or packaging Christmas presents for various businesses, so I’ve got to think there’s been a diminution in the quality of his life, but I can’t swear to it,” Humphrey said.

Continued