Parents of disabled kids thread...

My son seems to be thriving. We moved him halfway across the country in February due to a job transfer. He is near some extended family.

He’s had some minor bumps along the way, though I am not sure if that is related to living on his own for the first time or due to the pandemic. He seems to be managing his money OK so far, which was a concern for me.

He lives alone, though the socialization he gets at work seems to be enough. He works at a big box store and is considered essential, so has worked through the whole pandemic. His transfer bumped him from part time to full time with M-F day hours. He likes having his weekends free.

My older son seems to have transitioned to his apartment with no problem. Whew!!!

I think my younger son’s bipolar disorder is rearing its ugly head. He’s been on a tear lately. He got annoyed at my husband for something minor and DH said, “Could you give me a pass this time?” and Son replied, “I’ve been giving you a pass my whole life…” So infuriating. There was NO call for that. 33 long days until he’s supposed to go back to Lebanon, assuming the Beirut airport has reopened as it’s scheduled to. :frowning:

My autistic daughter is finishing up her senior year of college this week and will have her virtual graduation tomorrow. She’s been in her off-campus apartment during this pandemic and has really loved having all of her classes online. She basically has no social life anyway, so being in her apartment all the time (other than to get groceries) hasn’t bothered her at all. We’ll be moving her back home next weekend–I know she’s sad about that and also about not knowing what she’ll be doing next, especially with the grim job market. She would be great at doing remote work, so hopefully something will pan out eventually.

This was difficult enough to write, and even harder to share with others, maybe we can’t do anything helpful for your kid and don’t know of anyone who can, but we feel you. You are a brave fighter and truly a great father! Life shouldn’t treat you like this.

Anyone have any experience with Gould Farm in Western MA?

I actually have quite a bit of experience with Gould Farm! Ask away!

Just found out it is expensive. Looks great, too bad. Is your review basically positive?

Gould Farm was founded over a hundred years ago; it’s the first farm-based psycho-social community/psychiatric treatment program in the nation. On a 700 acre farm in the southern Berkshires… miles of hiking trails, gorgeous forests and fields and streams. A handful of programs have been modeled after theirs (you can find them listed on arta.usa.org).

I hear you about cost . And while $350/day is a substantial expense for most families, most private residential programs for treatment of mental illness run between $20-$60K per MONTH. So Gould Farm is really at the very low end of the cost ladder. It is a small private non-profit, but they are one of few programs that actually offer FA to families that qualify (it’s the same process, basically, as the FAFSA/college form). They usually give over $1 million yearly in FA. (Insurance, as we all know, does not cover most treatment programs for mental illness, and this is no exception.)

It’s a very unique treatment environment-- they combine clinical care (a team that includes psychiatrists, licensed clinical social workers, and a nursing staff ) with a wonderfully therapeutic work program (everyone in treatment works alongside staff 30 hours weekly on the farm). The work teams include Forestry & Grounds (they do things like clear hiking trails, tap trees and make maple syrup and apple cider), Bakery (they bake bread and bagels and pastries and make yogurt and ice cream), Farm & Dairy (where they care for animals, process milk, and make great cheddar cheese), Garden (they grow 5 acres of vegetables) , and Kitchen, among others. The work is meaningful; everyone plays a part. And residents in treatment (at Gould Farm they are called “guests”, as they were in the days the Farm was founded ) gain skills that are not just work-related but that help them learn to be able to get up in the morning, show up, be part of a team, and learn to see things through, even when everything in their head is telling them ‘you can’t do this, go back to bed and hide’. Guests are brought back into relationship with others and with themselves. Everyone is valued and appreciated-- there is no stigma, no judgement. Everyone there is a member of an authentic community – just about the entire staff lives on the farm with their families; there’s everything from newborn babies to teenagers in that mix. They all work together, play games together, share meals together. For someone whose world has fallen apart due to schizophrenia, bipolar, or depression, who have become isolated and marginalized, it is a place where they can gain a sense of competency and restore their self-confidence. The community is filled with guests and staff who are incredibly talented, creative, and smart. Musicians and artists abound., and people discover strengths and talents they didn’t know they had. It’s not a fit for everyone, but many people have blossomed there and used the skills they learned there to move on to independent, full lives; managing their illness rather than being defined by it. It is an extraordinary place, and they do treat many young adults whose mental health struggles began or were exacerbated at college. Their website: gouldfarm.org

My husband worked on a Christian farm in Mississippi in the early 70s. Their mission was to help mentally ill people. My husband said they helped a lot of people. His experiences there were useful when our son was diagnosed.

I would love to send my son to Gould but I don’t think we would qualify for aid.

I’m going to call them on Monday. Maybe my son could qualify for aid since he’s “independent,” on SSI.

Gould Farm does require a “family partnership”; they base FA on the finances of the family, not the prospective guest, regardless of age. The vast majority of those seeking treatment do not have the resources to cover the cost of treatment themselves. I am aware that the pandemic has limited their ability to offer FA to new applicants at present, but I don’t know specifics.

Thanks for the info!

Thanks @cameo43!

@cameo43 — it sounds like a magical and inclusive place that could benefit many—those with mental health needs and most of everyone else. It definitely sounds like a place worth investigating.

Too expensive. Not sure what the financial aid parameters are but with COVID things may be different.

Mental health care is so much better when you can pay privately. Whether psychiatry, hospital, follow-up or alternative programs.

@HImom: it really is. Of course, when it was founded over 100 years ago, “mental illness” hadn’t been identified… back then, people were often thought of as eccentric or odd, and those in emotional pain and who had struggled with fitting in and finding their place in the world were invited to Gould Farm, where they shared in the work and community that was steeped in unstinting kindness, as it is today. These days, guests come with diagnoses like bipolar disorder, schizophrenia, depression and anxiety; there’s a full clinical team, but many of the wonderful early traditions of the farm remain the same.

It’s hard to imagine a psychiatric treatment program that anyone would want to return to once they have discharged. But a couple of years ago, Gould Farm put out the word on social media that former guests were invited to join a first-ever ‘alumni reunion’ on a summer Saturday at the farm. The response was amazing. They came from all over the country; former guests from across five decades! Some brought their parents, some brought spouses and kids. It was a joyful celebration, and I had the privilege of sitting under that tent and hearing many of them share their stories of why they came to the farm, what their lives have been like since they left (not always a smooth road, of course) and what their experience at the farm has meant in their long-term mental health recovery. Powerful stories of struggle, courage, and resilience, acceptance, compassion, and support. It was so inspiring, and an afternoon that I will always remember.

I’m happy to answer questions here or via PM for anyone seeking more specific/detailed info about Gould Farm.

AND – someone JUST alerted me to this news segment, which ran on ABC News in Australia just this morning!! :slight_smile:

Some of you may be interested; it’s about a “care farm” mental health program that is being started in Tasmania, modeled in large part after Gould Farm.

( I hope it’s ok to share this link here; I know some links don’t work/aren’t permitted…)

https://www.abc.net.au/landline/care-farms:-helping-mental-hurt-through-care-farms/12447248?jwsource=cl

Article mentioning the ABLE Age Adjustment act (which appears to have slim chance of passing into law) and how FA hurts many…

https://www.upworthy.com/infuriating-thread-shows-how-financial-assistance-programs-are-keeping-disabled-people-in-poverty

My sister has 7 adopted special needs kids (yes, she is a Saint). The record keeping alone is a full time job. Can be a total dis-incentive to try to be a productive member of society for some of our disabled young adults…some of whom struggle to understand the reason/logic of it all…

This is something I am worried about with my son. He works full time for a tad bit more than minimum wage at a big box store. He qualified for SSI right before he went full time.

I am payee for his SSI money and he controls his paycheck. He pays his food, rent, car loan, and electric bill out of his paycheck. I pay his portion of his phone bill out of his SSI (which was about $400, is going down to about $50 next month because he got a bonus in June).

He wasn’t wanting to spend any of the SSI money. He was upset that I made him apply and that he got approved. I was worried that on pay day he would be over the $2000, before he withdrew money for rent or the car payment.

I finally got him to buy a camera and a couch. He is low enough for now. And, if he stays at the $50 level for awhile then it is OK, because that’s about what his share of the phone bill is.

But, I’d like to have $500 in his SSI account because I know he won’t save on his own and what happens if he needs tires or something?

It is hard…

@bajamm If someone is disabled before the age of 26 they can start an ABLE account and keep up to $100,000 without jeopardizing SS or other benefits. They are technically 529 accounts so you can use a different state’s program if you want. (Some states allow out of state residents but some don’t.) If you have above 100k you still get Medicaid coverage.

My son now has saved about $11,000 in his ABLE account. Rate of return over several years is 16%!

I’m an ABLE Ambassador for 2020. You can see me at https://www.ablenrc.org/able-ambassadors/2020/

My initials are TP. Let me know if you have questions. This is a non profit organization. I’m not shilling, ha.