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Your son will most assuredly be discriminated against at some point. Yes, there are laws against direct discrimination. That's why employers find ways to circumvent the law and release employees to prevent lawsuits. In right-to-work states, it's a given. It can happen, it does happen and will...

It's outrageous that CF patients can't immediately qualify for SSDI when others get it for nothing less than a hangnail. Then there's talk of a 2-year "Community College Initiative" that would cost $85 billion to taxpayers. Yet CF patients have to beg. Some of us don't meet those super critical...

You made an excellent point about the government paying for two years of community college. Of course that's just political hyperbole and the legislation will never be passed with the GOP in control of the house and senate. However, I think given that the GOP controls congress, we may be in a...

"Believing", I was told by PARC that no matter what, your son will get Kalydeco. Now whatever that means, they can qualify. But I agree with you. There has to be a coordinated effort among patients and families to insist that changes are made. PARC has taken note of our suggestions and will...

Right, "Jeana_Lynn". To qualify for SSD benefits with CF, you must either meet the Blue Book listing or be found eligible for benefits under a “medical vocational allowance”, which essentially shows that while your case doesn’t match the CF listing, you are nonetheless disabled according to SSA...

I agree with you 1000%, "Believe". As we age, we should consider continuous out of pocket expenses, should there be a significant issue. How much can PARC do, after all? So yes, we can be marginally employed, while constantly looking over our shoulders, wondering and stressing when/if our...

I don't get your logic. You want stricter requirements on SSDI? If damage is irreversible, wouldn't it be prudent to approach SSDI sooner, rather than later? No doubt CF patients want to work and don't want a hand out. We want a hand up. What if you can't keep a job? What if you lose your...

I'm speaking specifically about SSDI. The requirements are way too strict. It's more about disability insurance. Given the expenses of medications, treatments, etc, as well as the difficulties finding gainful employment, it's worth consideration that the SSDI requirements should be revised.

Beccamom, what a great post. I agree. No CF patient wants a handout but many need help. Look at your situation. You work hard and simply want an opportunity without fear of losing your job. And yes, there are people who take advantage of the system. Nowadays, people get disability for a hangnail...

Dank, You and I are in the same boat. What breaks my heart is that you are only 26. There should be an employment resource for all CF adults, who do not qualify for disability, to reach out for employment opportunities. The subject as been mentioned to CFF on a variety of fronts and they are...

Donin, we have to make our voice heard. Ask questions. Call your nearest state CFF office. Call Bethesda. Email. Ask. See answers. Reach out to other CF patients and families. Get them to do the same. A collective voice is louder than a single voice.

Jeana_Lynn, I agree. You make an excellent point. It's all semantics. What sigma? As though people would know. It's not like a scarlet letter. A label is what you make it. And the point some people miss is that "CF", itself is a label. You are so right, the label of disability allows you to get...

Wouldn't it be great if CFF offered an employment option for those who could work? Seems it's easy just to give up and go on assistance. But as we age, we need it. Tough choices.

donin, what a powerful story. And what a terrible thing to wish but given the circumstances with your insurance, it was the right time. But there really is no right time or no darned good reason for any CF patients to get sick to survive. That's just terrible for any parent to be in such a...

In the states, CF is not considered a disability by default but many patients, who meet the definition can apply for it. Problem is, you have to practically see a tunnel of white light as you flat-line just to qualify. Okay, I'm being sarcastic but the requirements are way too stringent. We need...

Great point. Tell us more about the "special health services" idea. How does that work? Thanks.

GoryLori, you make some very good points. Should CF patients be labeled and stigmatized as "disabled"? No doubt that is an issue among younger patients. Just having CF alone can be a stigma among children and adolescents so having the added stigma of "disabled" certainly doesn't help. However...

Hence why we should push for a declaration of disability for all CF patients, if they so choose. Many of us don't want to be labeled with words like "disable" but that's just semantics and really not the point. Ultimately its about protecting CF adults as they age while finding great difficulty...

You make a good point. It should also be noted that CFF is working more toward address things on a state level, given the wide differences between states on requirements and access to assistance.

Absolutely. Post away on FB. Family denial creates a manifestation of problems as CF patients age. Yes, more are diagnosed through testing and yes, the mindset is generationally different. Even though there are 30K of us, there are those who don't or can't admit there's an issue. I was one of...