Challenges in Caring for My Special Needs Grandson Because My Guardianship Was Through Probate Court

Two and a half years ago, my daughter passed away unexpectedly. Her husband was not involved in our grandchildren’s lives and they ended up living with our daughter’s boyfriend, who suffered from alcoholism. My husband and I wanted the kids in our care. We knew about legal guardianship and didn’t want the kids to go through the additional trauma of foster care. We decided to pursue legal guardianship through probate court and were able to obtain custody of both our grandchildren.

At the time, we were unaware of the discrepancy of financial support and services available between probate legal guardianship versus guardianships for children exiting foster care. Knowing this information would have been especially important in our situation, as our grandson is autistic and requires many additional supports and services.

What I know now is that there is a huge disparity in financial support available to me and my husband because we went through probate court to get guardianship. We really needed financial support because both my husband and I had to quit our jobs once our grandchildren came to live with us due to the increase in time and effort to care for and respond to their special needs. I now know that most relatives with probate court guardianships rely on CalWORKs, sometimes called Non-Needy Relative Caregiver’s Assistance (which provides financial support equal to about one-third of a basic foster care benefit). However, no one told us about the availability of CalWORKs until a year after we obtained custody. By that time, we had started to receive survivor’s benefits, which made our grandchildren ineligible for additional support through CalWORKs. The limited financial support through our social security benefits and the children’s survivor’s benefits left us struggling every month. After a year and a half of research and asking for help, we finally learned about the In-Home Supportive Services (IHSS) program. Because of our grandson’s continual need for supervision, we now receive some financial support from IHSS. The combination of survivor’s benefits and IHSS have helped us immensely, and I wish there had been someone who could have helped us access these critical supports right away. It would be have been enormously helpful to have someone help us access financial support immediately and understand the various eligibility rules for the programs in order to save precious time and energy spent trying to understand the different program rules while also trying to care for our grandchildren.

We also struggled in accessing services to support us in our care for our grandchildren. Our grandson required 24-hour care. We desperately needed supports beyond financial assistance, like child care. There was simply too much for us to handle at the onset. And yet, in those initial months, no services were offered to us to ease our transition. After a couple months, we finally learned about regional center services. We now receive about 15 hours of child care each week through the regional center. In addition to child care, our grandson needed special therapy services. Around the time we found out about regional centers, we were told about Applied Behavior Analysis (ABA) for our grandson, which provides therapy for autistic children. During the interim period of two months, we received some special therapy services for him through Medi-Cal. The delays in accessing therapy combined with having to switch between programs compounded the struggles of our grandson, who was already experiencing behavioral issues due to the sustained trauma from his mother passing away and transitioning to a new environment. Our granddaughter also required counseling services. Unfortunately, there were no services available for her because she does not have any specific diagnosis. We had to pay $6,000 out-of-pocket for her counseling services. Luckily, she did well with those services and we were able to end counseling services for her.

As grandparents caring for our grandchildren, we lost a lot of our friends. It took away time we had to spend with friends, to take care of our grandchildren. We also fought with some relatives for placement and lost relationships. Caring for our grandchildren at our age is also very wearing on long-term health. A mentor for emotional support and a group to meet others in our same situation is very needed. We were lucky to eventually be connected with YMCA Kinship Support Services of San Diego County, which runs a kinship navigator program. However, it took about five months to find this group. Their program helped us immensely. They provided us with respite, trauma-informed training, and connections with other grandparents caring for their grandchildren. We also got access to recreational programs for our grandchildren, such as camps that we otherwise would not have been able to afford on our own.

I believe relatives who take guardianship through probate court should be given full information about the ramifications, especially with regard to available financial supports and services, prior to finalizing the guardianship. It would also be helpful to have the advice of an advocate or mentor prior to making decisions that literally change the course of your life. Finally, families need help navigating the available supports and services and getting immediately connected to these programs. Making these changes in policy and practice will support countless families who are struggling to find their bearings and dealing with significant trauma.