Calling All Front Line Soldiers

I love this video...we're fighting this sickle cell battle together!!!!!!!!




Check it out.
http://scdsoldiernetwork.com/home
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Health Care Reform & Us

Affordable Care Act (U.S. health reform)

Historically, people with disabilities have been severely disadvantaged in accessing private health insurance, discriminated based on pre-existing conditions, with limits and exclusions of benefits, and at risk of losing coverage on short notice.

In 2014, according to the Affordable Care Act (Obama’s health care reform) if you have a pre-existing condition it will be against the law to discriminate you for having a pre-existing health condition.

The Supreme Court also determined (relating to the Olmstead v. LC Supreme Court decision) that Medicaid benefits are a civil rights issue and that disabled people have a right to expanded benefits too.

So, the Affordable Care Act also addressed Medicaid’s institutional bias – which allowed coverage of home and community based long term care services/supports (but) required coverage of nursing home services -- keeping too many people with disabilities in nursing homes, despite their preference for and cost-savings for them to be in community living (at home).

Also, the Affordable Care Act addressed:

1. For people working & determined by insurance companies to be high risk (with pre-existing conditions) and are currently denied coverage, these people will be helped to purchase insurance.

2. For unemployed or low income people they will continue to have Medicaid with expanded benefits.
a. In 2014 Medicaid requirements will be expanded to include people who make incomes up to 133% of poverty.

b. More people will be eligible, it will be easier to get, and more prevention care benefits allowed.

c. SSA’s standard of disability is too strict now; Medicaid changes will allow disabled people who don’t meet SSA’s standard of disability to still get Medicaid heath care benefits.

Too much to tell; check out the video links for yourself.

Health & Human Services - http://www.hhs.gov/od/index.html

What the Affordable Care Act Means for Americans with Disabilities http://www.healthreform.gov/forums/blog/disabilities.html

Health Reform & Americans with Disabilities http://www.youtube.com/watch?v=ccKQNklpCWg&feature=player_embedded

All Video Chats - http://www.healthreform.gov/forums/videochats/index.html

Who's Really Helping Us?

A study conducted by Kenneth R. Bridges, M.D. of the Joint Center for Sickle Cell and Thalassemic Disorders identified issues that affect people with SCD as:

Under-education - Under-employment - Medical bureaucracy - Basics of Living - Depression - Antisocial - self-destructive behavior.

I agree with all of these findings. What I want to know is anyone really helping people with sickle cell?

I’ve seen web site after web site telling us what they’re doing for people with sickle cell AND asking for donations.

I know, nothing is free.

But my questions are:

1. Are people with sickle cell disease really getting help with Social Security disability red-tape, disabled employee rights assistance, or disabled student rights assistance?
   


2. People with sickle cell disease in some cases Have TO work. Who helps them when they get fired for taking off work sick?
   


3. People with sickle cell disease in some cases CAN’T work. How/what/where do they get SSA application help?
   


4. People with sickle cell disease in some cases are depressed, lonely, in pain and live alone. Who is really giving “hands on” help?

I have more questions than answers.

I looked all over the web for some examples of people doing (hands-on) things for people with SCD and I found a few. I will profile these people/organizations in future blogs.