NCA Success Story: Utilizing Public Resources to Preserve the Trust

For individuals with profound developmental or physical disabilities, ensuring the highest quality of life often requires full-time, round-the-clock care. It is not uncommon for parents or family members of the individual to assume this responsibility. Taking on the full responsibility of care can often feel like a natural choice for family members for multiple reasons. Parents often feel that “no one knows my child like I do,” and the idea of educating a new caregiver on the unique ins and outs of their child’s care can feel like an overwhelming undertaking in and of itself. However, providing full-time care is expensive, even for a family member providing care, and many are unaware of the government-funded resources in place to assist them.

The reality is that many families experience lost wages or career opportunities when a parent or family member has to reduce hours or leave the workforce to provide care. And when government-funded resources are not being utilized, this puts families in an extremely difficult position, causing them to struggle to preserve trust-based funds.

This is why National Care Advisors is passionate about assisting families in securing the government-funded resources that they are entitled to. When the appropriate supports are in place, every member of the family, including the caregiver and the individual receiving care benefit immensely.

Mary was originally referred to NCA in 2015, and she and her mother have since been receiving case management services on an ongoing basis. Mary has profound Cerebral Palsy (CP) caused by a birth injury. She is nonverbal, non-ambulatory and requires round-the-clock care, which her mother has provided for her entire life. Through Mary’s special needs trust, her mother was being compensated $25/hour for 160 hours/month, resulting in a trust expense of approximately $4,000/month or $48,000 annually. A Special Needs Trust is a finite resource and serves as the funds that will be utilized to support the individual and their care for the entirety of their life.

In 2024, assigned nurse consultant Keri began encouraging Mary’s mother to pursue services through her state’s Department of Human Services Division of Rehabilitation Services (DRS) Home Services Program. Keri knew that the current hourly compensation was pulling a significant amount from Mary’s trust and that through the Home Services Program, they could be entitled to government-funded compensation that would alleviate the cost to the trust.

Keri guided Mary’s mother through the application process for the DRS Home Services Program, advocating on their behalf and ensuring that all paperwork was submitted appropriately and every step of the lengthy process was met. After approximately 18 months of ongoing advocacy Mary was approved for 219 hours/month of self-directed caregiver services, meaning that her mother can now be compensated through the program instead of the trust. Through the DRS Home Services Program, Mary’s mother or a trusted family member or friend selected by her may now be employed as the paid caregiver at the program reimbursement rate of $20/hour for 219 hours/month, equating to approximately $4,380/month or $52,560 annually in caregiver wages funded by the program rather than the trust.

This approval is a meaningful achievement for Mary and her family. In addition to increasing the number of authorized caregiving hours, it provides Mary’s mother with greater flexibility to utilize other trusted caregivers for respite when needed, while eliminating a substantial recurring trust expense. This outcome enhances the long-term sustainability of Mary's care plan by leveraging available public benefits to meet her ongoing support needs and allows her mother to pursue employment and continue her education as she wishes.

This case is an incredible outcome for Mary’s family and care team, not only on a financial level, but a personal level as well. It serves as an example of the power of National Care Advisors expert advocacy services to ensure the highest possible quality of life for clients and their family while leveraging public benefits and preserving trust based funds .

Contact us today to discuss how National Care Advisors can help you evaluate your unique circumstances and ensure you, your loved one, or client are receiving the benefits and services they are entitled to!