CHC Participants Express Dissatisfaction with Managed Care

The Pennsylvania Office of Long Term Living (OLTL) hosted listening sessions for CHC participants and their families during the April and May meetings of the Managed Long Term Services and Supports (MLTSS) Subcommittee of the Medical Assistance Advisory Committee. Individuals or their family members were provided three minutes each to share their experience with the program during COVID and in general.  The feedback was overwhelmingly negative.  Participants expressed frustration, anger, concern, and disappointment with the managed care plans’ handling of long-term services and supports.  Several themes emerged from the comments: 

• Service Coordination problems - CHC participants expressed difficulty and frustration accessing their Service Coordinators (SCs), getting return calls, frequent SC staff turnover (attrition), lack of training and knowledge, and inaccurate information about participants’ care needs. Several people testified that their SCs had “no clue what to do” or how to help them. Participants reported lack of continuity from one SC to the next, so prior requests for important services and supports (such as home modifications) went nowhere, and the process had to start again with a new request and assessment. Speakers shared that they had three, four, or five different SCs in one year.  Descriptions of SCs included: “so untrained,” “need training,” “no clue what to do,” “don’t know anything,” “horrible,” “SC calls for fifteen minutes every 3 months,” and “need more training and more supervision.” Three CHC participants did give positive feedback, saying they had an “excellent SC,” that their “SC has been angel,” and they had a “very good SC.” 
   

• Problems with services being denied or reduced - Many people expressed alarm about decreased personal assistance services.  Some questioned the adequacy and reliability of the assessments used to determine participants’ needs.  Others plainly believed that “profits over people” was the reason for the reductions in their services.  Participants described dramatic cuts in personal assistance services (PAS): 168 hours a week reduced to 51; 70 hours a week reduced to 23; 25 hours a week cut to 14; 59 hours reduced to 30; 79 hours a week reduced to 24.  Every participant whose PAS was reduced by their managed care plan was perplexed and upset because their health condition had not changed.  There was not improvement in their health, functioning, or family supports that would justify any decrease in PAS. 
   

• Staffing problems and low wages for aides – this was identified by several participants who thought the wages were too low for the difficulty of the work compared to less physically and mentally demanding jobs that pay better.  One participant said, “burger [fast food] places pay more.”  Participants also shared problems getting already authorized PAS hours filled due to the lack of available staff. 
   

• Burden on informal supports - Some commenters observed that CHC plans mistakenly think that informal supports (e.g., family and friends) can provide care in lieu of paid personal assistance services.  One participant commented that requiring or expecting family and friends to provide informal supports strains and damages their relationships. 
   

• Delays in getting services - Participants also described fighting for home modifications, medical supplies, and transportation, and long delays for their requests to be approved.  Too often their requests were denied.  One speaker said she had to get a lawyer to get a ramp and bathroom modification approved and installed.  Others spoke of waiting years to get home modifications implemented. 
   

• Problems navigating the appeals process – speakers shared confusion and frustration navigating the appeals process when in-home services were reduced or denied.  One participant commented that appealing adverse benefit determinations was a “full-time job.”  Others spoke of the stress of the appeal process and the negative toll it took on their health.
   

Several participants expressed appreciation for the opportunity to share their concerns while also wanting to know what OLTL will do with the feedback.  They asked, “Will a workgroup be formed?”  “What action will be taken now?”  “What will OLTL do with these complaints?” “How long will we put profits before people?”  “Is anything going to change?” 

Participants, families, and advocates are anxiously waiting for OLTL’s response to these overwhelmingly negative reviews of CHC after nearly three and a half years of implementation.