July chitchat

[Virginia]

Agate I am zapped and beat from the heat and very little sleep for the last couple nights. However I do now have my air conditioning fixed (hopefully). For me it is a disaster to be without air conditioning. After all I do live in North Carolina. It gets hotter and hotter every year.

I finally heard from my air conditioning man today. He sent me a text saying if I still needed him he could come between 12 and one today. I told him I definitely needed him. All he did was put some freon in, but the cost was $251.00. There are times in life when money doesn't matter if you can do it. This was one of those times. I just hope to get some sleep tonight along with some rest.

While Lee (air conditioning man) was here I got a call from my middle brother. He said he and his wife had been to the farmer's market and they were on the way to my house. They brought me some
tomatoes and corn on the cob and blueberries. They stopped at the grocery store and got a loaf of bread and some mayonnaise in case I wanted to make a tomato sandwich. They alstoo ought 3 bananas since I have bread, they thought I might want a banana sandwich. I don't usually keep bread or mayonnaise and they knew that. They had been out for pulled pork last week. They had more than they could eat so they froze me 2 dinners in food savers. They bought slaw in the grocery store to go with that.

Joan I am all too familiar with what we called window fans years ago. They did help but when my MS became more progressive I knew I never wanted to go back to those fans. When I was growing up we didn't think anything about it but I sure would now where I live. I have lots of windows in my house. I like the light but I am not sure what they do for you in the cold winter and hot summer months. I used to have a cooling vest and the scarves you wet and tied around your neck. Since I am seldom out now and in air conditioning in the summer, I gave them away when doing some cleaning out of things. I think I remember the vest as not being very comfortable.

Tim I didn't mean to say that your daughter and granddaughter were not well taken care of for the things they do for you, I just thought there might be some advantage if you could write it off like we do certain things on our taxes. They are probably happy to do the things they do. Like my brother and his wife surprising me with things from the farmer's market. They know I used to go almost every week and haven't been able to in years now. I ate vegetables all summer when I could go. It has been a big change for me and I am sure for you too.

[Prot]

Virginia,unfortunately there's no way I could write it off for tax purposes. I just pay VAT, not income tax. Without the support from my daughter, and granddaughters, I'd struggle to live independently. Using ChatGPT-


In autism spectrum disorder (ASD), it’s common to see a noticeable “gap” between a person’s measured IQ and their everyday adaptive skills. Here’s what that means—and why it matters—in plain English:

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1. What Is the IQ–Adaptive Functioning Gap?

• IQ score: A snapshot of cognitive abilities—how well someone reasons, uses language, remembers things, and solves new problems in a testing situation.
• Adaptive functioning score: A measure of real‑world, day‑to‑day skills—like dressing yourself, managing time, communicating needs, and getting along with peers.
• The “gap”: When someone’s IQ is average or above, but their adaptive‑functioning score is significantly lower.

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2. Why Does the Gap Happen in ASD?

1. Social‑communication challenges: Even if a person can learn concepts quickly (high IQ), they may struggle to apply social rules or read subtle cues in everyday interactions.
2. Executive‑function differences: Skills like planning, organizing, shifting tasks, and self‑monitoring can be harder for many autistic people—making practical tasks feel overwhelming.
3. Sensory differences: Heightened or reduced sensitivity to noise, touch, or lights can interfere with routine activities (e.g., cooking or using public transport).

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3. How Big Can the Gap Be?

• Research often finds autistic individuals scoring 15‑30 points higher on IQ tests than on adaptive‑behavior questionnaires.
• For example, someone might have an IQ of 110 (above average) but an adaptive‑skills score around 80 (below average).

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4. Why the Gap Matters

• Support planning: If you only look at IQ, you might overestimate someone’s ability to live independently. The adaptive score reveals where real‑life supports—like coaching on daily routines or social‑skills training—are needed.
• Education and employment: A young person may grasp academic material quickly but still need help with organizing homework, managing time, or handling workplace social norms.
• Mental health: Struggling in everyday tasks while knowing you can “think smart” can lead to anxiety, frustration, or low self‑esteem.

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5. Addressing the Gap

• Targeted life‑skills teaching: Explicit instruction in daily routines (e.g., step‑by‑step guides for making meals or personal hygiene).
• Social‑skills groups: Practicing conversational turn‑taking, recognizing emotions, and managing conflicts in a safe setting.
• Executive‑function supports: Tools like visual schedules, reminders, and priority‑setting checklists.
• Sensory accommodations: Creating quieter workspaces, offering noise‑cancelling headphones, or allowing flexible clothing choices.

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Bottom Line:
The IQ–adaptive functioning gap in ASD reminds us that intelligence on paper doesn’t always translate into smooth sailing in daily life. By measuring both, families and professionals can create balanced supports—leveraging cognitive strengths while bolstering practical and social‑emotional skills—to help each person thrive.

For most of my time as a psychiatric patient my genuine difficulties were regarded as a character flaw. Resulting in much criticism and disapproval, but very little help and support. My daughter put the record straight prior to my moving to be near her.

[Virginia]

Tim thank you for this information. It helped me to better understand where you are coming from. It must have been really bad to have people think you have a character flaw, when in fact you have an illness just as other people do. Yours happens to be autism.

I can relate to people not believing there is something wrong with you when there really is. So many people felt that way about me for many years because they always said I looked so good back then, so in their minds how could I have anything like MS. Even some of my closest friends back then doubted me. I always felt that they didn't care enough to read about MS.

I am so glad your daughter has been such a help to you. She sounds like a caring person but also knowledgeable. In that regard you are fortunate.

[agate]

Same here, Virginia. Apparently you have to have something very visibly wrong with you before some people will believe you. And you probably struggled hard to keep up a front and try not to burden people even though you were dealing with a boatload of symptoms that they couldn't see--but you certainly felt them.

[Prot]

This is the situation in the UK.

UK disability benefit cuts: plain English guide


This overview explains the main changes to Personal Independence Payment (PIP) and the health-related element of Universal Credit (UC), who’s affected, when the changes start, and what it means in simple terms.

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What’s changing to PIP

• Claimants must still score at least 8 points overall under the PIP system, but will also need to score 4 points in at least one daily-living activity (for example, washing, dressing or cooking) to qualify for the daily-living payment.
• Existing PIP recipients keep their current awards and won’t face these new rules unless their claim comes up for review.

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What’s changing to Universal Credit health element

• New UC claimants from April 2026 will see their health-related top-up cut from £97 a week to £50 a week (about £423 down to £217 a month).
• Current UC health recipients keep their £97 weekly rate, frozen until at least 2029/30.
• Around 200,000 people with severe, lifelong conditions (no prospect of improvement) will stay on the higher £97 rate, even if they claim after April 2026.

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Timing and who is exempt

• PIP changes apply only to new claims made from November 2026.
• People already on PIP or the UC health element, plus those with most severe conditions, are protected from cuts.
• Under-22s will not qualify for the UC health top-up until they turn 22; this starts from 2027.

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Estimated impact on claimants

• Personal Independence Payment
  • About 430,000 future PIP claimants are forecast to get no daily-living payment, losing on average £4,500 per year compared to today’s rates.
  • 370,000 current claimants could lose entitlement when they’re next assessed.
• Universal Credit health element
  • Roughly 700,000 new UC health claimants will lose an average of £3,000 per year under the £50 rate.
  • 2.25 million existing claimants keep the higher rate until 2029 but see no uplifts beyond inflation.
  • Around 840,000 of those new claimants will still be on the reduced rate by 2029/30.

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Wider numbers

• Nearly 2.6 million people currently claim the UC health top-up (35% of all UC claimants).
• By 2029/30, about 3 million children will live in households receiving some form of UC health payment; 800,000 of those will be on the new reduced rate.

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Politics and public reaction

• Human-rights organisations such as Amnesty UK and disability charities (Scope, MS Society) have labelled the cuts “cruel”, warning hundreds of thousands will be pushed into poverty and a two-tier support system created.
• Public polling shows a clear majority oppose cutting PIP and would rather see higher taxation of the wealthy than further benefit cuts.

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What happens next?

• The welfare bill containing these measures passed its key parliamentary votes in summer 2025.
• Reviews of PIP assessments and employment support reforms are due in autumn 2026.
• Campaigners continue to lobby MPs for further concessions and improvements to the benefit system.

These changes mark some of the most significant reductions in disability support for a generation and will reshape who gets help with the extra costs and income support they need.

[agate]

Belt-tightening seems to be very much in style, doesn't it?

There's some vagueness and some wiggle-room in those guidelines, seems to me.

• Existing PIP recipients keep their current awards and won’t face these new rules unless their claim comes up for review.

I wonder how often a claim might come up for review. If a review is really rare, existing recipients might be safe for quite a while.

Is this global tendency toward cutting back on spending something that is happening because COVID-19 was so costly, I wonder? Now the powers-that-be are in a mood to make people pay for the huge expenses involved in adjusting to the pandemic?

I'm guessing here.

[Prot]

Is this global tendency toward cutting back on spending something that is happening because COVID-19 was so costly, I wonder? Now the powers-that-be are in a mood to make people pay for the huge expenses involved in adjusting to the pandemic?

I'm guessing here.

Probably. In the UK we've seen government after government raise the bar as to what's regarded as 'genuinely disabled'. There's a lot of thoroughly dishonest talk as to how high welfare expenditure is in the UK. The reality?


47a74584-e372-44f1-a435-de1855c62a3b.jpg

[agate]

That seems to be a .jpg file, Tim, but for some reason I'm not able to see it. I'll try again later. Sometimes these issues straighten themselves out.

[Virginia]

I am able to see it Tim. The percentage the government is paying for health care in the UK is much less than I had thought and higher in some countries. I think the question I have is "how good is the healthcare in the UK?" Years ago I had a neighbor who was from England. She had been a US citizen for a long time. She and I spent a lot of time talking especially after I was diagnosed with MS.

My neighbor used to go back to the UK once or twice a year. She had two brothers who still lived there. She told me one of her brothers did not have much money and his healthcare was provided by the government. She said he had long waits to see doctors and to get test performed. Then he had a long wait to find out the results. Her other brother was better off financially and could afford private insurance. She indicated that he had good care. This was many years ago. She moved into independent living and we only had lunch occasionally after that. I am sure things have changed a lot. She has now moved up north close to her son.

[agate]

I'm seeing it now too, Tim. Maybe private care is gradually edging out the National Health Service in the UK, or no?

[Prot]

The NHS has been underfunded, especially that dealing with mental illness, for many years. If you can afford it then private care may be a better option, if and only if it's not a pre existing condition.The USA system is not a good health system for those on low,or even average,incomes. I'm a staunch believer that health care should be prioritised based on severity of disability/illness. That being financially well off shouldn't put you on the fast track re the health care you receive.

[Virginia]

I certainly agree with you Tim. Our financial well-being should not dictate how good or bad our healthcare is. It is very unfortunate that it often does, and you are right that healthcare in the US is not always so great. In my opinion, one of the problems in this country is a shortage of doctors. We are getting more and more from other countries. This doesn't bother me except for the fact that their English is often poor and it is hard to understand them. I also often wonder about the medical schools they have attended in their own country. Here you can at least check the schools out if you are not already familiar with them, but when they are in another country that is hard to do.

I miss having an American doctor who speaks good English to me. I currently have an Egyptian doctor for my primary care. I have had an Iranian. I liked her better than I do the Egyptian. He is in my opinion not as smart as he thinks he is and is very hard to get along with. But this is the way healthcare is now.

[agate]

Makes sense to me, Tim--providing care based on medical need. Medical providers are good at figuring out what is severe and what isn't so severe. Patients are often bad at it but once they describe or present their problems to a trained person, a decision can be made.

[Prot]

It's 8.30 am here in the UK, and already too hot for comfort. I'm not as good at coping with the hot weather than I used to be.

[jingle]

I sure wish you all would talk more! I look in here many times a day and I'm so disappointed to see nothing. I live a quiet little life and I miss people talking. My excitement right now is tomatoes.... fresh, delicious, precious, home-grown tomatoes. I even have more than I can eat so tomorrow I'll take some to my nephew - who loves home-grown tomatoes as much as I do.