MY DISABILITY LEARNING TREE

I became disabled relatively late in life and didn’t fully appreciate the ways people with disabilities are discriminated against.  That changed when I acquired a chronic pain disability that radically changed my life.  During that lonely and difficult transition I learned how uncomfortable non-disabled people are even talking about disabilities, seemingly thinking they are somehow contagious.

Shortly after joining CFILC, I met with the Executive Director of the State Independent Living Council.  After listening to my disability story she told me:

“Be aware that people with hidden disabilities can find adjusting harder if people don’t believe they are actually disabled.”

I was puzzled by her words.  Managing my disability is a daily challenge. Yet, I couldn’t see how my life could be “harder” than wheelchair users or those with other disabilities.

My first hidden disability experience showed me that such prejudice and discrimination comes in many manifestations.  The common thread is ignorance or the public’s perception we enjoy special protections and “privileges” they are denied.

It occurred on a recent Hawaiian vacation.  Travelling always aggravates my pain, especially sitting in airport lounge chairs or prolonged standing waiting to board flights.

I’ve learned that early boarding to be seated and avoid passenger jostling helps.  So, I always check in to request pre-boarding.  Airlines are always accommodating and never ask for “proof,” although I always keep my Morphine prescription bottle handy.

On a recent inter-island flight, my wife and I arrived just as pre-boarding was ending.  The flight attendant waved that we could pre-board, but a man waiting for standard boarding loudly complained that I was cutting in and should get back in line. 

I ignored him.  However, my wife told him I pre-board because of a back disability. 

“Oh, please.  Maybe next time I’ll pretend I have a bad back too.”

Hearing this, she glared and told him I had experienced 10 years of constant nerve pain.  What did it matter to him if the only benefit of pre-boarding was to sit in my pre-assigned seat? His face turned red and he didn’t reply.  Checkmate.

These reactions are typical of the lack of public awareness about what it’s like living with hidden and visible disabilities.  Many of us have heard complaints whenever people park in disabled parking spaces and walk into a building.  They presume they are not “really disabled” if they can walk, ignoring the fact they may have a respiratory or mobility disability.  Not every disability is visible.

Of course, my insignificant airport experience pales in comparison to horror stories I’ve heard from friends in wheel chairs.  Airport physical accessibility remains a problem and many are mishandled or dehumanized going through security screening.

We must continue to educate people that disabilities are not stigmas.  Anyone can acquire a disability, and if they do, they are entitled to the hard-earned civil rights protections that promote equal opportunities and living productive lives.  As our population ages, even more people will acquire hidden and visible disabilities.

This is one reason why we must continue the struggle to protect our rights.

CALIFORNIA MUST EXAMINE THE CUMULATIVE IMPACT OF STATE HEALTH CARE BUDGET CUTS BEFORE IT'S TOO LATE

On November 3^rd, the Assembly Budget Subcommittee on Health and Human Services convened a hearing to review the cumulative effect of California’s health and human services budget cuts.  Assembly Member Holly Mitchell, who chairs the subcommittee, said that legislators need to critically examine the actual impact of the cuts made in 2011, as well as those from previous years.

California is waging a multi-front war in the Federal courts and is seeking approval from the Federal government to slash state health care spending.  Although the state is offering “evidence” that the cuts won’t negatively impact state health care services, the real casualties will be the seniors, the poor, and people with disabilities who unquestinably will be denied access to adequate health care and supportive services.  At the hearing, Assembly Member Wes Chesbro criticized the rush to judgment in cutting primary care and supportive services programs that save long-term costs.

On the day of the hearing, the developmentally disabled community protested outside the Department of Health Care Services (DHCS) about cuts it negotiated with the Federal government that are being challenged in the courts.  Advocates for seniors and the disabled are also participating in a possible settlement over the denial of Adult Day Health Care as a Medi-Cal benefit. 

Most recently, the Federal government approved DHCS’ request for a 10% cut in provider reimbursements for a range of Medi-Cal services.  As expected, multiple lawsuits have been filed to halt the provider cuts that are also a core issue being considered in a related case before the U.S. Supreme Court.  The cuts would further reduce California’s provider rates that already are among the lowest in the nation. 

The harsh reality is that the additional rate reductions will really affect patients, not doctors.  They will force providers to decide how many Medi-Cal patients they are willing to see.  The current rates actually cause providers to lose money in treating these patients and an additional cut will mean that fewer providers will agree to treat them.

This outcome causes a ripple effect in the overall health care delivery system.  Patients without access to primary care providers inevitably become sicker by postponing treatment.  In turn, Federally-qualified health centers and hospital emergency departments will be forced to absorb these patients and the state will also pay more costs if they are institutionalized.

In addition, the Federal government will also soon announce whether California can limit doctor and clinic visits to achieve additional Medi-Cal savings.  DHCS claims that they will not negatively impact access to care.  However, advocates know that more providers will refuse to treat Medi-Cal patients, that emergency room visits will require longer waiting times, and that there will be a significant reduction of providers in rural areas.

Assembly Member Mitchell is correct.  The inevitable cumulative ripple effect means that the denial of access to adequate health care will occur downstream after the cuts have been made.  Under this scenario, California’s health care safety net may never recover, let alone meet the challenges of an aging population and the growth in public assistance caseloads.