When our son Danny was 3-4 years old, I logged a lot of hours in the waiting room of Cedars-Sinai while he received occupational therapy, physical and speech therapy. He then had a diagnosis of “global developmental delays” which was eventually changed to cerebral palsy/apraxia.
In those pre-smart phone days, we Moms (and an occasional Dad) didn’t have much else to do but talk to each other and often had impromptu support sessions, sharing the latest on therapies, medications, doctors, and of course, medical insurance. We were fortunate to have pretty good coverage through my husband’s aerospace employer, but the horror stories of those waiting room days stays with me.
There was one mom, a lovely British immigrant who had premature twins, and they both had pretty severe special needs. She couldn’t stand living with her husband any longer, and wanted out of the marriage, but had to stay married in order to have insurance for her boys. There were other parents who had Medi-Cal (California’s form of Medicaid) and wanted to get better-paying jobs, but worried that additional income would make them ineligible for Medi-Cal, and the jobs didn’t provide health insurance for dependents. Other self-employed parents couldn’t get insurance for their children since they had “pre-existing conditions” such as heart conditions.
Even with insurance, it was a constant battle to get the right services for Danny. My bulging paper files from those days are filled with appeal letters, written by us, by physical therapists, even doctors, asking for more physical therapy, an extension of speech therapy, or a referral to an out-of-network provider. In most cases, we were successful, and when we weren’t, we paid out of pocket, sometimes with help from grandparents.
Today’s Supreme Court ruling doesn’t solve all these problems for parents raising children with developmental delays, but it will make a difference. As the UCP Washington office wrote on their website, “The continuation of the Affordable Care Act (ACA) and its polices with ensure that children with pre-existing conditions and young adult dependent children will have access to private health insurance up to the age of 26.”
As the ACA is implemented over time, other benefits will kick in, such as the ability of adults with disabilities who have pre-existing conditions to purchase health insurance that meets their needs, starting in 2014.
The California Health Benefit Exchange will give individuals and small employers the ability to purchase affordable health care, also starting in 2014, and those services can include mental health, therapeutic, and other services.
One aspect of the ACA that hasn’t been discussed much is the “Community First” option of Medicaid that started in October, 2011 which gives bonus federal dollars to states that provide in-home aides to adults with disabilities in a community setting. to encourage them to move from a nursing facility/state hospital to the community and to achieve their maximum potential.
Even with all these benefits, however, there are many potential challenges with the ACA. As Rabbi Hershy Ten, president of Bikur Cholim Jewish Healthcare Foundation in Los Angeles told Jewish Journal reporter Julie Gruenbaum Fax, “Very few providers accept Medicaid, and there is no comprehensive list of those that do. And he said almost no specialists or surgeons accept Medicaid. Many doctors don’t even accept some nationally known private insurers, because the reimbursements are not worth their time.” (See the full article here)
Still, as I recall those waiting room heart-to-heart talks, having something will be better than nothing for families raising a child/teen with disabilities.