Long-Term Services and Supports Discussed Ahead of State’s Aging Plan

California is on the verge of a “Boomer Bomb” with the number people over the age of 65 expected to rise from 5.2 million to 8.4 million by 2030. Governor Gavin Newsom pledged to develop a master plan for aging as the “Golden State” goes gray. But if California is really intent on taking care of its elders and people of all ages with disabilities, it will need a robust commitment to long-term services and supports.

At the third annual Independent Living Conference in Garden Grove, an “LTSS for All” town hall on Wednesday stressed that very need, especially in Orange County where there’s 800,000 people with disabilities. The county’s in-home supportive services (IHSS) program also has more than 29,000 clients.

“Unfortunately, so many of us across the state don’t have the resources to afford what we need,” said Allie Cannington, a community organizer with the Disability Organizing (DO) Network who served as moderator. “Even those experiencing the most intense levels of poverty can’t access long-term services and supports through Medi-Cal, which is one of the largest budgets in our state.”

What falls under the LTSS umbrella acronym?

Services and supports range from in-home care providers, assistive technology, durable medical equipment and anything that helps people with chronic illnesses, disabilities, and medical conditions lead a fuller, independent life. Cannington asked the audience of about 100 people gathered at a Great Wolf Lodge conference room if they use LTSS and half the room responded affirmatively. When posing the question in the form of knowing someone who does, the rest of the room followed suit.

Making sure that everyone who needs LTSS can access it in the future remained a top priority of discussion. Panelists included Monique Taloa, a local IHSS provider represented by United Domestic Workers, AFSCME Local 3930, Paula Margeson, executive director of the Dayle McIntosh Center for the Disabled in Anaheim, Jose Peña, Assistive Technology coordinator at the center and Leigh Broadway, an AARP member.

A common thread through the conversation is how health insurance also puts people in a LTSS pinch.

“Unfortunately for me, my insurance has a co-pay that I’m not able to afford even though I have a full-time job,” said Peña, who has cerebral palsy and isn’t eligible for Medi-Cal. “I had to make the tough decision that I would no longer do physical therapy due to my finances. When I decided to not do physical therapy, I put myself at a greater risk of sustaining an injury.”

Having to make such difficult choices is something Margeson had to deal with as well. When she moved from Dallas, Texas to return to the Dayle McIntosh Center five years ago, all didn’t go according to plan. Her husband had trouble finding work, which prompted a decision to take on diabetes medication costs at the expense of keeping health insurance.

“I’m telling my story because you would think, as the director of a center making a really decent wage, I wouldn’t have a long-term services and supports issue but I do,” said Margeson. “This can happen to anybody. When we talk about these things, it’s all of us.”

Assemblyman Tom Daly (AD-69) and Assemblywoman Cottie Petrie-Norris (AD-74) also participated in the town hall discussion as invited guests. Petrie-Norris spoke from the experience of having a mother who suffered a severe accident that left her quadriplegic and in need of IHSS services. “I know firsthand the work that you do and the love that you give and the degree to which you do let people live with dignity in their own homes,” she said to Taloa. “When I look at California’s LTSS system, it’s no secret that we are woefully unprepared and that the LTSS system is, in many way, broken.”

Petrie-Norris offered five critical points that must be included in Newsom’s forthcoming master plan: addressing out-of-control pricing for durable medical equipment, streamlining government services, maximizing investment in successful programs, consolidating leadership and supporting workforce development.

Her colleague in the State Assembly also put his faith in the master plan due a year from now. “Once that document is produced, that will set the framework for all the tactics that can be used to address aging,” said Daly. “There’s probably more work being done in California now than has been done ever but it’s been a lot of talk and demographic projections. Now there’s real money in the state budget to look at the demographics in great detail.”

Where there isn’t a lot of money is in the pockets of IHSS providers in OC. They continue to make the state minimum wage and only recently gained paid sick time rights. “I lost a couple care providers that were professional,” said Taloa. “They were unable to keep that job and their client because they couldn’t afford to take care of themselves. We are really hoping that that changes, and very soon.”

The Orange County Board of Supervisors has the authority to raise wages for IHSS providers, but the Republican majority hasn’t done so. Daly mentioned that he’s had discussions with supervisors about that issue. A Santa Ana resident spoke from the audience about the importance of IHSS providers, likening his time in a nursing home to being in a “cage” by comparison.

“I don’t want to survive,” he said. “I want to live with dignity.”