The Lifehouse Effect

A Parent Story: Marc Elias

My son Peter was born in 1979. Although small, he seemed fine until he turned one and had his first asthma attack. Over the next 3 years he was hospitalized with asthma or pneumonia a dozen times. At the age of 4, the asthma stopped and my wife Ann and I were hopeful that he would have a healthy future ahead.

Everything changed when Peter was 5 ½ and started having headaches. He had a CT Scan that revealed a massive brain tumor in his right frontal lobe, so we prepared ourselves for Peter to go into surgery. Half of the tumor was deemed inoperable and the doctor said Peter likely had 5 years to live, with a 2 –10 year window.

We were shattered. Our world changed. It was difficult to simply take one step in front of the other. I felt helpless and felt that if we lost Peter, I would go too.

Every year since then seemed like a milestone, and it was immensely challenging. Five years turned into 10 years, and although developmentally delayed, Peter was a happy boy. It was clear though that he could not take care of himself as an adult.

As a parent of a child with developmental disabilities, finding a place like Lifehouse has been a true blessing. Under the compassionate guidance of Mike Sus and his dedicated staff, Peter has thrived in an environment that fosters independence, growth, and dignity. With the support of Lifehouse, he is active in his community and has a life of his own. This year Peter turned 45 and is thriving. Peter loves his family so much, especially his 2 sisters, his niece, and nephew.

The programs and housing that Lifehouse offers have helped Peter and so many others in our community. I am continually amazed by the unwavering commitment and passion that Nancy Dow Moody, my wife Ann Elias, and the entire Lifehouse team demonstrate in their work. Their dedication to improving the lives of individuals with intellectual and developmental disabilities is truly commendable and has made a significant difference in our family’s lives. The hard work, compassion, and dedication does not go unnoticed, and I am immensely grateful for everything that the organization does for my son and the community as a whole.

Legilative Breakfast

Advocating for the vitality of the lives of people with intellectual and developmental disabilities and the people who support them.

The Legislative Breakfast was held on April 19th in collaboration with the Golden Gate Regional Center (GGRC), the Service Provider Advisory Committee (SPAC), and the AdvoCats. Over 100 people attended and notable figures included, Assemblyman Damon Connolly, Board Supervisor Katie Rice, Aide Zach Koblick de Leon, and San Rafael Council Member, Rachel Kertz. Lifehouse’s very own Director of Operations, Kate O’Connor headed up the coordination of the event, is the Facilitator to SPAC and a member of the GGRC Board-Liaison for SPAC.

The purpose of the Legislative Breakfast was to educate legislators and local officials about the Governor’s budget proposal to delay the much-needed rate increase by a year for intellectual and developmental disability (I/DD) providers. The morning was full of inspired speeches from people receiving support services, direct support professionals (DSP), service providers and family members. Each one calling out the glaring disparity between the wage DSPs receive, and the complex work that they do.

Jessica Perez, a Lifehouse DSP gave a stand-out speech touching on the myriad of ways that she supports the people that she works with, the importance of supporting people with I/DD, and the stress and hard work that all too often interferes with continued employment for most DSPs. Despite all of this she shared, “I love my job! How many of us can say that? I say it again, I LOVE MY JOB! I find purpose in the work I do; this work challenges me and allows me to learn something new every day. I know my work is important and that it helps the lives of the most vulnerable in our community.”

In the State of California, the turnover rate for DSPs is around 50% with some agencies having as many as 1 in 8 DSP roles consistently vacant. Current wages do not keep up with the rising cost of living. If the State of California continues to delay the new rate model implementation will hurt not only to people with I/DD but the people who support them.

Growth in the North Bay

In recent years, Lifehouse has grown significantly as an organization, now supporting over 370 individuals in Marin and Sonoma Counties. In the North Bay, we are now supporting about 117 individuals, compared to just 26 individuals four years ago. Our new expanded office space in Petaluma provides opportunity for collaboration and support for our North Bay staff and community.

Our growth in the North Bay can be seen in the ILS program, which is designed to provide training and promote independence. The ILS program provides funding for up to 35 hours of staffing support per month and focuses on developing living skills that include budgeting, medical support and medication management. This for some is just enough to keep them living a more independent life. A person is eligible for services regardless of whether he or she is renting their own place or living with family.

We have seen an increase in the need for this type of service in Sonoma County. This program has doubled in size in the past four years.

 One resident who recently joined our ILS program is Sonja. With the help of Lifehouse staff, she has been able to maintain daily routines and activities. Sonja loves the interactions with her staff, who help her with independent living skills and activities such as cooking, making appointments, depositing checks, and taking medication. Her staff also help her with communication and relationship skills. She is grateful to be able to maintain her independence with the assistance of her Lifehouse counselor.