New Mexico's DD Waiver program is the program through which Lyn receives her case management, respite care, speech therapy and the funds for her in-home care provider, Mom. Lyn has been participating in this program for a number of years now. Just before Lyn's diagnosis of dementia, she was placed in a pilot program in which the skill levels of the participants was evaluated using the Supports Intensity Scale (SIS).
The SIS is an evaluation which results from interviewing the participant and their chosen respondents such as family members, case managers and friends. The focus is to discuss only positive information such as the participants goals and desires and evaluate the person in light of what it would take for them to function at a societal norm. In Lyn's case, they wanted to determine what it would take for Lyn to do the tasks that a normally functioning woman of 40 years would be able to accomplish.
During the interview, both Mom and Lyn's case managers spoke with the SIS interviewer indicating that recent and concerning changes had been noted in Lyn and that she was scheduled for evaluation. They cited as an example her loss of the ability to change radio stations in the car or start the washing machine.
The results from the SIS evaluation conducted a year ago on Lyn were just send to Mom and Lyn's case manager this week. The scale used is not the one that was described when the evaluation was done. The results caught everyone off guard. Lyn has been classified at a B level. This means that the state and the folks who rated her evaluation believe that Lyn is fully capable of independent living. This would additionally reduce her speech therapy to 8 hours a year, remove her budget for in-home care and day hab and reduce her respite care provider budget to the bare minimum allowed by program guidelines.
Mom was advised to call the program office and request that Lyn be re-evaluated because of the dementia diagnosis and the documented changes such as loosing recognition of 1/6 of her previously known sight words. Mom has done so. This has suspended any changes to Lyn's case management for the moment.
Lyn is not the only client facing such dramatic changes. An 80+ year old man in the program who requires 24/7 eyes-on care was also classified at B level. Other in-home care providers, mostly parents, and the case managers are actively advocating for their clients because the changes are grave. Currently, several are banding together, getting lawyers and seeking court injunctions to prevent the changes from going forward. Legal action will halt the enforcement of these changes until the cases are resolved.
What would this mean for Lyn? She's already struggling with her sight words and in her weekly 1 hour speech therapy session. If this is removed or reduced to the recommended 8 hours annually, I firmly believe her rate of decline and loss of words will increase. If her budget for in-home care is removed, Mom will immediately have to seek full time employment. If her budget for day hab is removed, alternate sources of funding would have to be found or Lyn would have to be removed from participation in her program. Finally, if Lyn's respite care is reduced to the bare minimum, then her ability to attend her social events will be even further compromised. Lyn cannot be left unattended any longer. Removing her from day hab and from her respite provider would place 100% of her care squarely on Mom's shoulders without any hope for a break in addition to saddling Mom with 100% of the financial burden for Lyn's care. Removing Lyn from her activities and participation in her community will degrade the quality of her life and of Mom's life. This would increase their isolation and, most likely, increase the rate of Lyn's decline.
While I think focusing on a person's goals and dreams is a noble idea, if this is the resulting implementation, then it fails to take into account the reality of the person's abilities. Even a year ago, Lyn could not have lived independently. Today, that's not even a pipe dream.
I deeply hope the new evaluation is reflective of Lyn's reality. What would it take for her to live like a normally functioning 41 year old woman? It would take more than what support she's receiving currently provides.