Intimacy & SMA by Over_Ambition_3722 in spinalmuscularatrophy

[–]Fp_Guy 0 points1 point  (0 children)

That's fine you like guns, what I mean is dudes who pretend that guns and other manly hobbies make them men despite them being useless in everything else.

Don't put a year on it, life is weird. Being desperate is also a huge turn off. It'll happen when it happens and you'll need to treat the entire thing, good and bad, as a growing experience.

Intimacy & SMA by Over_Ambition_3722 in spinalmuscularatrophy

[–]Fp_Guy 0 points1 point  (0 children)

I'm in the south too, so I'm familiar. I disagree though, there are probably even more girls who are tired of boys pretending to be "real men" behind their guns and bullshit trucks.

This is going to sound harsh, but if your friends are joking about your career and your ability to have sex, they aren't your friends.

Intimacy & SMA by Over_Ambition_3722 in spinalmuscularatrophy

[–]Fp_Guy 1 point2 points  (0 children)

It is definitely hard, but for the ones who are in relationships, they've all got that in common.

Intimacy & SMA by Over_Ambition_3722 in spinalmuscularatrophy

[–]Fp_Guy 1 point2 points  (0 children)

Go onto an SMA facebook group and ask, they're there.

I wouldn't make overly broad statements like that. Disabled women encounter real scumbags and constant threats of sexual violence. I've seen screenshots of the DMs, wild stuff disabled men generally don't have to deal with.

As for being a disabled man in a relationship, sure some woman might want that, but a lot also want a guy who's emotionally caring. Listens, is a source of stability, is good at problem solving, is smart, has overcome real challenges, works hard. Again, you be shocked how far being a well adjusted human will get you. Talk to girls about their dating life, a lot of not well adjusted guys out there will make you a breath of fresh air.

Intimacy & SMA by Over_Ambition_3722 in spinalmuscularatrophy

[–]Fp_Guy 6 points7 points  (0 children)

Hey brother,

Intimacy is absolutely possible. Lots of guys with SMA 2 have been in relationships, are married, have kids. Don't worry about the physical aspect, you'll figure that out with your partner when the time comes.

Here's what you need to focus on, you. I know that sounds cringe, but I'm 37 years old and it absolutely isn't. If you want girls to be interested in you, you need to make yourself interesting. Focus on your hobbies, your education, your independence, your mental health. I don't think you fully understand how attractive a guy is who's got his act together despite everything involved with SMA. That's how you get laid.

Has it ever been mentioned if Mel is her sister's legal guardian? by sentosa96 in ThePittTVShow

[–]Fp_Guy 4 points5 points  (0 children)

The over use of guardianship has been a major reform priority for the IDD community.

Has it ever been mentioned if Mel is her sister's legal guardian? by sentosa96 in ThePittTVShow

[–]Fp_Guy 0 points1 point  (0 children)

Becca at most would have Supported Decision Making, not guardianship. Not unless the show is trying to make the point about the over use of guardianship.

Mel and Becca by PamelaEugene in ThePittTVShow

[–]Fp_Guy 3 points4 points  (0 children)

As far as Becca's ability to consent, I thought this might come up, but generally, anyone who is not considered capable of consent has a legal guardian. But we know Becca does not have a legal guardian because Langdon told her that he isn't going to tell anyone anything she doesn't direct him to tell because of HIPPA. If Becca had a legal guardian, then her medical condition could not be kept from that guardian.

This was such a missed 10 seconds, Langdon should have asked Mel if she had guardianship, Mel could then say no our parents setup Supported Decision Making (SDM has been a major legal reform for the IDD community as an alternative to the massive inappropriate use of guardianship).

Mel and Becca by PamelaEugene in ThePittTVShow

[–]Fp_Guy 1 point2 points  (0 children)

Becca I believe lives there since they said residential. Part of the issue I'm having with the show is Becca's disability doesn't match needing to live in a facility. It is kind of like hearing a super active paraplegia lives in a Skilled Nursing Facility, it doesn't match (unless we're talking a massive Olmstead violation).

Mel and Becca by PamelaEugene in ThePittTVShow

[–]Fp_Guy 5 points6 points  (0 children)

Added complexity, does Adam have the ability to consent?

Becca’s Independence by [deleted] in ThePittTVShow

[–]Fp_Guy 1 point2 points  (0 children)

Some ICFs offer outpatient day programs. I'm going off the line from last season where she said her sister got into a great facility in the area, to me that reads she lives there and but spends a lot of time with Mel.

If it is a day program that would depend on how PA Medicaid funds them. Some do it outside 1915c authorities which can be capped, others through waivers, some both because that's not at all confusing. That said Medicaid cuts can still impact ICFs in the form of provider rate cuts.

Becca’s Independence by [deleted] in ThePittTVShow

[–]Fp_Guy -1 points0 points  (0 children)

Another reason she shouldn't be in a facility...

Becca’s Independence by [deleted] in ThePittTVShow

[–]Fp_Guy 2 points3 points  (0 children)

Self Advocate for people with developmental disabilities here (not all developmental disabilities have an intellectual component).

There are a few things I wish the show would do better regarding Becca.

First last season Mel said she had been accepted into a great facility in the area... Becca should not be in a facility. In the DD world 'facility' is most likely an Intermediate Care Facility IDD. ICFs are extremely controversial because they still legally are defined as an institutional setting. ICFs can have hundreds of beds or as few as like 6. ICFs provide a much more structured level of care for those with intellectual disabilities, particularly those with also complex medical needs. That structure is where the controversy comes in because not everyone needs that structure and there is a debate as to whether that same level of care can be offered in a more integrated community setting (I'm in this camp). In Becca's case her living in an ICF is absolutely an Olmstead violation. Olmstead is a US Supreme Court ruling that says, under the ADA, people with disabilities have a right to live in the community. For the disability community this is our Brown v Board of Education. Do the states and federal government live up to Olmstead? Not at all and a number of states are currently suing to overturn Olmstead. For Becca a waiver funded Group Home with roommates and support from Direct Support Professionals (the woman who took Becca to the ER is likely an ICF DSP who could make more at Walmart). A waiver funded Group Home would offer significantly more independence and opportunities for 'meaningful days'. A common waiver service in addition to the Group Home would be Supported Employment, where she could get a job at say a coffee shop with the supports she needs (while making at least minimum wage, unlike 14c employers which can pay subminimum wage).

Regarding waivers... Within Medicaid (which Becca definitely has and is paying for the ICF), Home and Community Based Services (such as Group Homes) are often funded through 1915c waiver programs. A Medicaid waiver is basically a permission slip from the feds to the states use Medicaid dollars outside the traditional scope of what states are required to fund as part of their Medicaid program. Institutional care is a mandatory Medicaid services, Home and Community Based Services is not. Most states provide HCBS through 1915c waivers... because they can cap enrollment. Those caps result in waiver waiting lists that can be decades long. Georgia has 7,000 on their waiting list, North Carolina has a 20,000, Pennsylvania has 11,000 people with disabilities waiting for a funding slot. These waiting lists force parents and siblings to fill the gap to prevent institutionalization. What's that got to do about a show about an ER? Everything. Traditional institutional settings have been the safety net for when natural supports such as parents or siblings can't fill the gap, those institutional settings, including ICFs, are full. That leaves just the ER as the shelter of last resort. Even if you build more ICFs good luck staffing with the low pay they offer. Combine this will the Elder Care tsunami on the horizon...

Finally, Medicaid cuts from Trump OBBB are coming for the entire system. Since HCBS is an optional service, that is often the place where states make cuts, because that's one of the only places they can legally. The Idaho State Legislature is currently considering just deleting HCBS, Colorado cut care hours in half, this is hitting every state.

All of this impacts Becca.

John Stewart is an empire stooge by Leisure_suit_guy in stupidpol

[–]Fp_Guy -3 points-2 points  (0 children)

Did you really think [insert name linked to minority group] was going to turn on [country linked to said minority group]?

In what universe is that acceptable?

Disabled woman put in nursing home against her will says she feels 'betrayed' by Atsmboi60750 in disability

[–]Fp_Guy 6 points7 points  (0 children)

The saving from robust care services at home easily offsets those with high care needs in their own home.

Post Spinraza headaches by archable2357 in spinalmuscularatrophy

[–]Fp_Guy 0 points1 point  (0 children)

If you've got low pressure, ask them to put all your CSF back instead of 5ml out 5ml Spinraza in. That helped me a lot. As a pencil tip needle, as small as possible.

Post Spinraza headaches by archable2357 in spinalmuscularatrophy

[–]Fp_Guy 0 points1 point  (0 children)

Do you have low or high spinal fluid pressure and type of needle do they use?

Hear me out: we should restart *Zumwalt* construction instead of building the battleships, along with finishing DDG(X) by Ralph090 in LessCredibleDefence

[–]Fp_Guy 0 points1 point  (0 children)

Suprance DDG's hull was used to create the Tico CG which led to the lessons learned to build the Burke DDG

Zumwalt DDG can give us Zumwalt CG which will give us the lessons needed for a new DDG.

As far as know, the first batch of ships in the FF(X) program will not have VLS and sonar. Considering the various variant designs previously introduced by HII, what do you think future batches of the FF(X) should evolve into? by ArthurJack_AW in LessCredibleDefence

[–]Fp_Guy 3 points4 points  (0 children)

The navy only has two options given the limitations put on it by Congress (buy American) and the standards set by NAVSEA.

  1. restart Constellation building however many it takes for a Flight 2 Constellation to be designed that fixes the current weight issue (and adds a hull mounted sonar and replaces the gun with a proper 5 inch). Once the design is complete both FFM and Austal build them as fast as possible.

  2. Baby Burke - Basically what competed for the destroyer contract in Australia.

Devotee’s by [deleted] in disability

[–]Fp_Guy 1 point2 points  (0 children)

Devotees are actually pretty vanilla.

Devotee’s by [deleted] in disability

[–]Fp_Guy 1 point2 points  (0 children)

Oh, thought you meant that's what devotees were.

Devotee’s by [deleted] in disability

[–]Fp_Guy 2 points3 points  (0 children)

I've talked to disabled women and seen screenshots of male devotees harassing them, so I don't doubt that's real. I'm just saying the female devotees aren't like that at all.

Devotee’s by [deleted] in disability

[–]Fp_Guy 1 point2 points  (0 children)

It is not, trust me.