Say What? Added Costs for Special Needs Care Strains Families and Budgets

My previous blog offered my opinions regarding the new Obamacare plan and how it might affect coverage for parents of children with special needs.

Regardless of insurance coverage, the best of insurance plans will not provide coverage for many of the incidental costs of providing care for children with disabilities.

We may take for granted the regular costs of raising a family, however, hidden additional costs contribute to the financial strain experienced by so many families in the best of economic situations, let alone in the current state of affairs.

Programs like Medicare, Medicaid and State Children’s Health Insurance Programs (SCHIP), may offer coverage for limited services, however, do not cover the significant out-of-pocket costs, in addition to deductibles and co-pays, for the necessary related equipment and supplies. These necessary expenses might include prescriptions; over-the-counter medications, ointments, and supplements; diapers; special bath and toileting equipment and supplies, and specialty food items and feeding implements. Then there’s special equipment for seating, standing, and mobility; wheelchairs, special strollers, trays, standers, walkers, gait trainers, and more.

I haven’t mentioned the additional costs for physical, occupational, speech or other therapies that are not covered by insurance. What about the cost of gasoline and transportation to the more than average number of health-related office visits? How about tutoring, caretaking, and counseling costs? Then there is loss of income due to time off work for the increased number medical appointments, procedures, IEP meetings, or incidents that unexpectedly arise.   Some parents cannot hold a full-time jobs because of their responsibilities as a parent to be available on a day-to-day basis.

Parents, feeling the burden of these expenses, are often forced to prioritize and compromise activities and expenditures the entire family might otherwise enjoy. Regardless of the family’s economic status, or the disabilities involved, these hidden costs are often a hardship and can put a strain on the parents, and entire families, of children with special needs.

I know, I’ve been there for the needs of my granddaughter. My heart goes out to all of you in these difficult times!

Best,
Julie

Say what? What about the new healthcare bill and special needs kids?

Let me begin by saying that my past experience of 30+ years in the healthcare field and owning a large medical billing company provide me with the qualifications, I believe, to express my personal opinion here.
In addition, I've been dealing with my granddaughter's healthcare issues for 12 years and, I might add, it's been a challenge from the start.

Some of you may think the new Obamacare plan will benefit disabled children and adults.
If it truly offers coverage for those with pre-existing conditions, this is the only benefit I can see.

We know that most private insurance companies, with the exception of premium plans, provide little, if any, long-term care for the disabled. Medicaid and Medicare plans only provide services when “approved and authorized”. Authorization is usually provided based on the end result or gain. If there is no gain, there is usually no service. We know what happens without therapy and other needed services. It becomes an unfortunate vicious cycle for all concerned.

Don’t be fooled by broad terms like "basic benefits" and "covered".  They are not the fine print. What is "covered" is not what is "approved" or; for that matter, even "allowed".  

Authorized, allowed and approved are the key words in fine print!

What if your child doesn’t walk, or talk? What then is the benefit of therapy? Is there a gain? What about premature babies and the cost of keeping them alive? What about children born with syndromes and severe disabilities? What about those that are institutionally deemed?  Where will it end?

What’s that you say? Counseling is a benefit of the new plan? Think about it.

Physicians providing care to Medicare and Medicaid patients are currently difficult to find because they cannot sustain their practices on the reduced reimbursement rates. What makes us think highly trained specialists will be available to us (all) in the future if reimbursements continue to drop by adding, still another government plan? How can they remain in practice?

This is truly a tragic and sad turn of events, at least to me. By rushing into a decision that should have been carefully evaluated, I believe our government as put the wheels in motion that signal the beginning of the end of the most wonderful healthcare delivery system in the world.

What do you think?

Best,
Julie

Say What? What is Equal Play?

As a member of the Rotary Club of San Jose and a Park Commissioner for the City of San Jose I don’t have to tell you that I’m passionate about parks. And I’m passionate that our parks be accessible to everyone in every way.

Finally, after many years, the recreational needs of children and adults with disabilities are being addressed and something is actually being done about it. This includes accessible trails, (adaptive) sporting events, camping opportunities and equal play parks.

The San Jose City Council recently approved the Rotary Club of San Jose’s project for their 100 year anniversary. What’s the project? It’s an equal play park that the Rotary Club will construct as a “turnkey” project and gift it to the city.

For those of you who may not know the meaning of “equal play” it means just that; a play area that includes equipment for all children regardless of their abilities or disabilities, to play equally side by side. The play area has not yet been designed, however, will feature elements that will address all children but in particular children with special needs and disabilities to make a day at the park a fun experience for all.

In my opinion, there’s no better way to raise awareness than for children with special needs than to play side by side with their able bodied friends, siblings and peers. Equal-play parks, sometimes referred to as “boundless playgrounds” are popping up everywhere and it’s about time!

Our neighborhood community centers also offer many programs and all access recreation activities. I encourage you to check them out. To learn more go to the PRNS website www.sanjoseca.gov/prns.

Special thanks to the City of San Jose and the Rotary Club of San Jose for making the dream of an equal-play park a reality!

Best,
Julie

Say What? How "disability friendly" is your business?

It's my impression that we all take for granted the ease in which we enter and/or exit a store or business; walk the aisles once inside; or step up and down curbs and walkways to get to our desired destination. 
And, how about parking and getting in or out of a car (or wheelchair)?  And, let's not forget the difficulties with seating in restaurants when dining out.

Can you imagine how difficult these simple tasks can be if in a walker or wheelchair? 

Please give thought to these simple considerations for evaluating
business "accessibility friendliness".

*   Do entrance doors have automatic openers?
*   Is the entrance to the store or business easily accessible to disabled persons and particularly those with mobility limitations? 
*   Are there steps?  Is there a ramp?  Is there a lift or elevator?
*   Are aisles wide enough to maneuver and accommodate wheelchairs?
*   Are there accessible restrooms, phones and water fountains?
*   Are there accessible tables that accommodate wheelchairs?  Or moveable seating?
*   Are disabled parking spaces provided with space for vans with lifts?
*   Is there appropriate signage for elevators and public restrooms?
*   How about the staff?  Are they cusomter-friendly?
*   Is staff helpful and courteous to those with (visible) disabilities?
*   Is assistance provided to move barriers to reach goods or services?
*   Does the business employee individuals with disabilities?

It has been my experience that most businessess make an effort to genuinely accommodate and extend courtesies to those in need, especially the disabled.  Unfortunately, there are still some (and I know we've all experienced them) who do not have a clue.  
I believe we can all help raise awareness, in a courteous way, by educating businesses when they fall short in the area of "accessibility friendliness". 

Best,
Julie