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BOSTON (SHNS) – Following a groundswell of advocacy from people with disabilities and local service agencies, MassHealth officials are switching gears on a wide-ranging change they had planned to make to the state’s care delivery system — though the agency is still pursuing some reform.
MassHealth issued a procurement for an Independent Assessment Entity (IAE) on Feb. 16, which they said would create a single entry point for consumers to access eight programs that provide long-term services and support for the elderly and people with disabilities.
Under the current system, more than 400 independent entities provide clinical evaluations for around 240,000 residents who use services covered by the state insurance program.
When MassHealth issued the request for response (RFR) in February for companies to bid on a statewide contract to take over these assessments from local providers, it was met with a groundswell of anger from some advocates within the disability community.
Following months of back and forth between advocates and MassHealth, representatives said during a forum hosted by Dignity Alliance Massachusetts on Aug. 22 that they are no longer pursuing the single assessment entity model.
The Personal Care Attendant Workforce Council began convening meetings soon after the RFR was issued last winter to address the issue, voicing concerns that companies bidding on the job could be from out of state and motivated by profits rather than caring for people.
For decades, individuals seeking long-term care in Massachusetts have worked with community-based providers or nonprofit agencies to access services. That local organization assesses and evaluates individuals and works with them to access MassHealth coverage, and also provides referrals to other support programs, works with caregivers, and supports people who need to appeal MassHealth decisions.
“I’ve been a PCA program consumer for over 12 years now. And I’ve had the same nurse evaluator for 10 of those 12 years. Her name is Dottie. And when it comes time to decide the care coverage hours that I need, I really have the utmost trust in Dottie to get things done,” Diana Hu, who uses a motorized wheelchair, said in June.
Hu, chair of the Boston Center for Independent Living and member of the PCA Workforce Council, said Dottie was grounded in “independent living principles.” This philosophy is rooted in the idea that people with disabilities should have control over their own lives and access to services that help them live in their communities, and not in facilities where they often cannot make their own decisions.
Hu and others praised the Independent Living Centers in Massachusetts that conducted their annual assessments, and said they were afraid what their lives could look like if a profit-driven company was in charge of determining their care instead.
“It reminds me of being on the Mass Pike. You’ve got all the lanes open, but all of a sudden everybody has to go through one lane,” said Nancy Garr-Colzie, who also uses a wheelchair, during the forum. “And if your information is wrong, you’ve got to get out of the line.”
Jeni Kaplan, health law attorney at the Massachusetts Law Reform Institute, said in June that the assessment entity — based on the RFR MassHealth issued — would have made program-specific changes to eight long-term services: Adult Foster Care, Group Adult Foster Care, Personal Care Management (personal care attendants), Day Habilitation, Adult Day Health, Senior Care Options, Program of All-inclusive Care for the Elderly, and OneCareHome.
For the PCA program, certain assessments that currently happen in person and in the home of consumers, could have occurred over the phone or video calls by someone staffed at the IAE, she said. Additionally, nurses would no longer have required the input of an occupational therapist.
Individuals who use this program said the in-person component is an important piece of the assessment, as nurses can understand a lot about a person’s health and how much help they need by the state and layout of their home.
For the PACE program, OneCare and Senior Care Options — programs that primarily assist seniors — consumers would have had to do an additional evaluation, which Meg Coffin of the Center for Living and Working said would “increase the assessment burden on members.”
“MassHealth seems to be prioritizing administrative efficiency at the expense of consumer-driven and consumer-centered planning. And particularly the development of the IAE reflects that profound disregard for the philosophy and principles of independent living,” Coffin said. “In centering a more uniform, consistent experience, MassHealth is significantly undermining the ability of agencies to provide the careful individualized assessment of a person’s unique needs and the development of a service.”
MassHealth representatives have said for months that the consolidation of assessments was never an effort to save money, but a response to a real issue of long wait times and confusion that people have with so many entry points to try to receive care. In that vein, they are still pursuing an amended RFR to address this issue.
According to MassHealth data, the lag time between a referral and when prior authorization is issued is currently exceeding 100 days on average at eight Personal Care Management agencies.
Additionally, the department said that if members are screened out by a provider or determined ineligible for a service, that decision is not appealable. The Executive Office of Health and Human Services has no way of knowing what happens to that member or whether they were provided with any alternative service options.
In the PCA program alone, MassHealth knows 861 members were screened out in 2023, but they don’t know whether they were offered any other support.
The process change was meant to address some of these issues, as well as streamline a confusing system for people who participate in multiple programs, they say.
“Our call center, my office, I personally get multiple complaints a week regarding how long it takes to get an assessment, how confusing it is, and why you need to get an assessment if you already got assessed somewhere else,” Mike Levine, assistant secretary at MassHealth, said at a June forum about the issue hosted by the Disability Advocates Advancing our Healthcare Rights coalition.
At that forum, Levine said he and his colleagues were listening closely to advocates’ feedback and apologized for moving forward with “insufficient community support.”
In addition to sharing concerns about an IAE, disability activists also took issue with the RFR process. They said prominent disability rights groups were not consulted about the idea before the procurement was issued in February with an original bidding deadline of this summer.
The Boston Center for Independent Living, PCA Workforce Council and other groups led a number of demonstrations at the State House about the topic over the past months. During many of these protests, advocates chanted “Not about us without us,” criticizing MassHealth for what they said was a lack of conversation with people with disabilities in the development of the proposal.
MassHealth eventually pushed back the RFR bidding date to Sept. 6, and in the meantime issued a Request for Information (RFI), soliciting feedback on the proposal. Levine’s announcement Wednesday that the agency was no longer pursuing an independent assessment entity came after reviewing the responses to the RFI.
“I do just want to start out by acknowledging that I think MassHealth started this dialogue in the wrong way. We should have engaged more upfront prior to releasing the RFR. I hope you’ve noticed that we are trying to do more engagement now through the RFI and conversations with stakeholders. But really, this is only the beginning,” Levine said during the virtual forum.
He addressed community providers and consumers with personal experiences who spoke at the webinar, saying that they “fully agree and hear you that there are ways to reduce administrative burden without an IAE, and we’ve started some productive conversations on that front.”
EOHHS plans to significantly amend the RFR to better preserve aspects of the system that members have indicated are working well today, according to the department. The modified RFR will be posted no sooner than October.
The amended procurement will include revisited timelines and an additional question period. The original timeline had implementation starting in 2026.
“I just want to reiterate that we do share everyone’s commitment to assessments being done by local, community based organizations who know their members, they know their families, they know their communities, and they know the options in their communities,” Levine said Wednesday.
He continued, “I do have to say, at the same time, the number of calls that my office gets about people struggling to get an assessment or struggling to find the right door, having a hard time knowing where their loved one needs to go to get services… There are improvements that I think we all agree need to be made, and there are a lot of people waiting a long time to get an assessment. And that’s not the level of access and the level of equitable access that we as an agency are committed to providing.”
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