True quality of life makes every day more enjoyable for every resident.

Kaye has developmental disabilities, severe cerebral palsy and rheumatoid disease. She is very polite, and often inconveniences herself to keep from “bothering” others, especially the staff who care for her. Kaye likes a quiet environment in her home. When two new residents moved into her facility, the noise and disruption they caused made her think it might be time for her to look for another place to live. Her own personality just could not handle the constant agitation of the new residents. She knew those new folks needed the care provided in her current facility, and she was ready for a change anyway, so she took matters into her own hands. She approached the administrator and asked, “Do you have any homes for handicapped people?” She pointed to her walker, indicating she would require accommodation such as ramps and level floors.

The administrator, a little (pleasantly) surprised by Kaye’s sudden assertiveness, replied that she did indeed have such places, and in fact a new home was being purchased at that moment. She told Kaye that her name had just become the first on the list of people to move in when the facility was ready. Kaye further told the administrator why she needed this change, and the administrator agreed to look for compatible personalities for this small facility, so that all concerned could have a peaceful existence. Kaye and her new housemates got along for the most part, enjoying one another’s company and generally working out any differences they may have with the help of the staff. 

One day, however, three of the women were waiting for the administrator to come in to work. They marched into her office and said, “We don’t like that sweetener stuff you make us put in our tea! It doesn’t taste good. We want sugar!” The administrator reminded them that their health concerns (diabetes, overweight, and other considerations) meant that sugar was not to be included in their diets, by order of their doctor; however, a new sweetener had just hit the market that was supposed to taste like sugar and not have an aftertaste. She asked if they would try that product for a few days and let her know how they felt about it. They agreed, the facility purchased the sweetener, and the following Monday the women reported that the new sweetener was acceptable.

Several years later, state budget cuts threatened the funding for the residential service which supported Kaye and her housemates. Kaye again approached the administrator concerned that she would have no place to live if the cuts eliminated funding for her living arrangements. Kaye asked the administrator what she could do to let her legislators know how important her services were to her. The administrator helped Kaye by typing a letter which Kaye dictated, expressing her concern and the necessity for funding to keep her place in the facility – her home. She then asked to hand-deliver the letter. The facility arranged for Kaye to attend an event where her legislators would be present. Kaye hand-delivered her letter to each of her legislators at the event. Needless to say, funding for services for Kaye and for those like her was spared.

Kaye, who often remained quiet so as not to inconvenience others, certainly found her voice; and she used it loud and clear, even though her speech was severely impaired by cerebral palsy. Because her administrator and the staff who worked with her listened, Kaye was able to advocate for not only herself but also her housemates and disabled people all over the state, to secure a better quality of life. Kaye’s story is one example of how person-centered care can empower people, and make differences big and small in the quality of life of individuals, groups, facilities, and systems.

Tristan was an 11-year-old boy diagnosed with Autism Spectrum Disorder. He was extremely bright, but had behavioral and social difficulties and the typical environmental stimulation issues.

Tristan’s school was not meeting his developmental needs as required by federal law, but his mother did not know about that law. She dutifully followed the instructions given her by the school personnel in her efforts to control her child, who was responding to the school’s mistreatment and failure to meet his needs by acting out toward teachers and other students, and bringing that anger home to his family. The school district was criminalizing Tristan’s behavior, involving juvenile justice whenever Tristan had a behavioral outburst. They advised Mom to do the same. Understandably, Tristan began to display mental health issues. Unfortunately, those were also misdiagnosed, and he was placed on inappropriate medications.

His mother removed him from school and enrolled him in another school outside his home district. She drove him to school every day. The new school followed suit, continuing to involve law enforcement and pushing Tristan farther into the juvenile justice system. He was on probation at the age of 11!

Tristan’s mom had consulted mental health services, and Tristan was taking multiple psychotropic medications. He began to develop involuntary body movements and tics, which only served to make him stand out even more from his classmates. They contributed to Tristan’s difficulties by making fun of him and reporting him to his teachers, who in turn punished him because of his behavioral issues. Of course, all this escalated the situation to a crisis state. The so-called “professionals” were pushing Tristan into incarceration, or alternatively, institutional placement in inappropriate facilities.

Our Mother’s Voice provided Tristan’s mother information about the federal law governing education of persons with disabilities, and about psychotropic medications in children. Mom toured an agency that enables people with disabilities like Tristan’s to thrive in their home communities with proper supports. With this knowledge, Mom hired an attorney specializing in advocacy for children like Tristan, who assisted Mom in confronting the school district with their violations of federal law and educating them in their responsibility for meeting Tristan’s developmental needs. Mom gained confidence with this knowledge, and became a strong advocate for Tristan.

Tristan became a teenager who loved school, thriving in the schools in his home district, and is receiving appropriate supports for his needs. His medications have been reduced and changed to appropriately manage his mental health issues. The tics and involuntary body movements have subsided.

Tristan will continue to need specialized services and supports, but empowering his mother with information about federal law and proper treatment for Tristan’s developmental disabilities has truly made the difference between tragedy and success for this young person!

UPDATE, 2021: Tristan is now 21 years old, learning to drive, living with his mom, and attending community college. He is also a support person for his grandmother with dementia, who also lives in the home.

Melody contacted Our Mother's Voice despondent because her father, diagnosed with severe dementia and living in a nursing home, was not able to feed himself. This fact was noted in his plan of care, as was the requirement that he be assisted by staff to enable him to eat. He had to be fed. One day Melody arrived at the facility to find no staff with her father, and his lunch in his lap. She saw that he had lost weight. She didn’t know what to do.

With the information we provided her, and with encouragement to bolster her courage, she subdued her emotions, and wrote down all her observations with date, time, names, and specific descriptions of what had transpired. She cited both positive and troubling observations; and, with the negative ones, identified violations or failures to follow the plan of care.

She went to the facility’s Administrator with her documentation, and had a long conversation with him. She was pleasantly surprised when, rather than the resistance she expected, he thanked her for the information and assured her it would receive his attention. Almost immediately, she noticed changes. Staff behavior changed. Staff assignments became more consistent. Care plans were followed. And one staff member is no longer at her father’s facility.

Her father passed away recently, but the quality of his last days improved dramatically because of Melody’s advocacy. And he leaves a lasting legacy of improved quality of life for all the residents who still live in that nursing home.

David was the primary caregiver for his father, who had dementia and declining physical strength and health. Over the course of a year, his father had illnesses requiring hospitalizations, and he received home health services. David confronted challenges with each care provider, and the discharge process from each hospitalization did not include proper preparations for resources to be in place (as federal regulations require) when his father returned home. David needed information about what was supposed to be happening in the discharge planning process, and about the regulations regarding continuing therapy and home health services beyond the typical “60-day limit” which many providers mis-apply in their practice. Our Mother’s Voice provided this information, and David succeeded in improving these services with each hospitalization and return to home health services in his home. 

David’s father again required hospitalization, followed by admission to a nursing facility for “rehab services.” The admitting facility knew of his father’s dementia and assured David that they could serve him. However, once admitted, David’s father did not receive the required physical therapy. The facility presented the excuse that David’s father “refused” therapy.

Given that many people in the general population describe therapy after illness or injury as a difficult or even negative experience, it is no surprise that a person with declining cognitive capacity would require extra encouragement and creative techniques to participate in therapy. But the facility did nothing to encourage his father’s participation. David’s father languished in his bed for almost two months. The facility discontinued Medicare billing after only 26 days, citing his father’s “refusal” of therapy. They billed David for the remaining 28 days of “care” – during which David repeatedly and adamantly insisted that the facility was obligated to provide therapy, that they knew his father had dementia and that it was a key factor in his refusal, and that they should implement strategies to encourage him to engage in therapy. The facility did none of these things. David sought an attorney to assist him in appealing the discontinuation of both therapy and Medicare coverage, and in holding the facility accountable for their failures. 

Finding no attorney willing to take the case (they believed he would lose), David took the advocacy tools he had gained from Our Mother’s Voice, and filed the appeal on his own. Citing the facility’s failures, their admission of his father with full knowledge of his dementia, and their use of his “refusal” and his “lack of progress” to discontinue the needed service, David used federal regulations governing nursing homes and the federal court case “Jimmo v. Sebelius” through three levels of appeal – and finally, successfully argued before a federal Administrative Law Judge that the facility had violated federal regulations and failed to provide essential services to his father. This individual from a small, rural community successfully advocated on behalf of his father – on his own – and prevailed.

After his father returned home, David advocated for home health services and therapy again, to keep his father as strong as possible as long as possible in his home. As is the ultimate course of dementia, even with these services in place, David’s father’s condition continued to decline, and he passed away about one year after David first accessed Our Mother’s Voice for advocacy information. David continues to be a strong advocate for services for people in long-term care.

Our Mother lived for 5 1⁄2 years in long-term care with severe, late stage, and end stage dementia. The first months were terribly difficult for her and for us, as we advocated for needed systemic changes in her facility so that she and all the other residents would have a better quality of life. The process took a few years, and just as with all human endeavors, it remains ongoing.

This story is about the difference advocacy made in her quality of life. Our Mother went from having infections and dehydration every six weeks to having over two years of good physical health. She went from agitation and not being on the correct medication regimen to being treated by a geriatric psychiatrist with a knowledge of the brain changes in dementia and how different medications act on those changes. He prescribed the correct medications. She stabilized, and had moments of alertness until the last months of her illness. She went from not having meaningful activities to engaging in moments that were important and meaningful to her. She received the therapies necessary to keep her moving as much as her condition allowed, and to keep her able to take in nutrition and hydration by mouth as long as possible, even though her underlying condition meant that she could not be “rehabilitated.” Because of these therapies and an enlightened dietician, she was able to receive a modified diet which included provisions for whole foods on days when she was alert, even though her ability to chew and swallow was compromised. With stable staff assignments, her caregiver learned to recognize changes in her status, so that decisions could be made regarding how or whether to provide whole foods. Her staff also learned to recognize “atypical” indications that she may not be feeling well – and that she was not simply being “noncompliant” or “lethargic.” They began to look for causes for these changes and address those causes.

Our Mother benefited from the change in organizational culture that was brought about in her facility. We are grateful that she lived long enough, if not to know what happened and why, to experience in her own way the improvement in her quality of daily life that resulted from her advocacy for herself and her fellow residents. Our mother’s voice, although silenced by dementia, continues to speak through us as empowered advocates to impact the lives of not only loved ones, but those we have never met.