Profoundly disabled

Either through state funded programs (Ca has Regional Centers), private insurance, medical or in some cases out of pocket debt.

Ds had respite care through regional center with an LVN. He had 120 hours a month but unfortunately in CA LVNs are not allowed to tough CVLs and PICC lines. He also had an RN that came to check his CVL and do labs. We could have fought for more care but I was burned out.

When he is older we will do a private care center. He isn't profoundly disabled but mild/mod. Social security, medical, Regional center, and us will cover it. So there will be some out of pocket.

There is also IHSS in home social services where the parent is the caregiver and paid to care for their child. Families can then use the funds to pay for help.

It's complicated and depends on the state. Many states do not put much money into disabled services. So a lot of parents move.

It's a shitshow in Texas, even for the moderately disabled. Our friends are terrified for what will happen to their son with autism, who will likely always need assistance with daily living tasks.

Oh and Ca does have adult services. 2 types. In center and both in and day trip programs.

There is also department of rehabilitation that helps with job training and placement.

Some centers have 1:1 and 2:1 care and some even have pick up/drop off available.

Depends on area and funding.

Temecula area and surrounding have a lot of funds. Riverside County has more funds than San Bernardino County. But SBC is getting more and more which is good.

It's very state/area dependent unfortunately.

On another board I've been on for years, we crowdfunded a power wheelchair for board member's teenager so that she could attend (public) high school (she used a manual one that an aide pushed for her in middle school but the high school refused to accommodate for that)...that shouldn't need to happen And they lived in California which is usually one of the better states for help and funding from what I can tell.

Did the child have an IEP? Unless the IEP team decides to not support an aide/para anymore, it isn't up to the school site.

Dd had a 1:1 para from 6th grade through senior year due to her disabilities. IEP team knew it was needed and school sites couldn't say no.

If there was no IEP and it was done in good faith, then yes school could say no because it is pulling a resource from them and not provided from para pool.

You'd think a school would want to help but there are steps so it sucks

I believe she had a 504 plan not an IEP but I'm not 100% sure.

There are some state funded facilities. Outside of Denton is a facility that was once called Denton State School" but was/is a 24 hour care facility. I knew 2 families who had a child there. I have no idea how a family qualifies for the child to be there.

Damn. I am sorry.

The care for disabled and elderly in our country is shameful. Some states are better than other. In Kansas there is a 10 year long wait list for Medicaid supports for developmentally disabled individuals.

Here in Mass, it depends on- alot.

I don't know many people who are profoundly disabled personally enough to know all the services/lifetime of support stuff.

The only person whose situation I know intimately has been given and continues to receive, education "to their potential." Various iterations of etiquette and occupational learning support and refreshers over the years. Lives in either shared living (basically adult foster care) situation or small group home for the last 25 ish years (private room and bathroom required) and will continue to do so unless something changes, all health care covered, down to podiatry visits to trim toenails. Transportation to job, or day program or religious services. Transportation to family events, shopping, interests when planned in advance. Day program is covered, as is all groceries etc in group home. Mental health services. Gets entertainment credits for good behavior (trips, items, and outings.)

A week and a half ago, they had an episode that involved the police 2x in one night, and elopement from their group home, two emergency room visits (attention seeking- this is normal) and 2 ambulance rides in the space of 8 (overnight) hours. I can't imagine the cost to taxpayers. It cost them their phone for 30 days, and no outings for a weekend.

I don't know what more they could do, if I'm being honest. I'm very conflicted about it. When you stop to think about all the resources funneled into some people, but other people are working their asses off and having their checks taxed beyond the limits of reason. My son works full time in a skilled trade to earn his credentials, provides his own transportation, living expenses, pays for his own entertainment, healthcare, insurance etc---- and can't afford his own place- yet his paycheck is tapped for all these services. He needed to go to the doctor due to an injury sustained at work, and with insurance he couldn't get an appointment for nearly 2 weeks. When he finally did, the out of pocket on the care he did get was over $2000. Any idea how long it takes a dude making barely $25 an hour (paying for his own expenses) to pay off $2000?

IT depends so much on the state, and the age of the person.

My son, in WA state, was very blessed in that we had good private insurance through my husband's employer, he was born within a window of time where he was immediately put on state services (so supplementary insurance that covered things our private insurance did not cover, including in-home personal care providers for a set number of hours per month), and a school system that did a good job of including kids with profound disability in the regular education setting along with supports and services. Our children's hospital accepted his combined insurance coverages for most things so we paid minimally out of pocket. All of this was a huge help to our family. And at the same time, his care needs were enormous and precluded my ability to return to paid employment.

What I mean about location and time of birth (or diagnosis)-- there were kids in our neighborhood born 6 months later who were on wait lists for services for up to 6 years. Or kids with similar diagnoses born around the same time, but in other states, who waited for much lesser services and supports until well into their teen years. For special needs families, this incredible inequity complicates family decisions like relocating for work or to be closer to family -- if you move, will you lose all services? Will you be on a long waiting list? Knowing the answers to those questions is very unpredictable. One could do all kinds of research and believe that their new location will cover serivces, only to make the move and find themselves on a decades long wait list (thinking of FL specifically here).

Being a parent of a profoundly-involved special needs child is incredibly difficult, and the bizarre and often punitive way government services operate (ok--private insurance too) only makes it more painful. Even in a relatively liberal and "generous" state, there were specific rules that really served no other purpose than to humiliate or cause suffering. One example: For individuals over age 5 on through adult who required incontinence care, there was actually legislation stipulating that their state coverage could not pay for anything other than the very cheapest diaper or brief on the market and the cheapest cleaning option. So we could receive a shipment of 350 wafer thin, stiff as cardboard and loudly crinkly diapers and a spray bottle with pink soap solution in it, together with what were basically paper towels. We could not have an equivalent dollar amount of higher quality Huggies and wipes. The cost to the system would have been the same (we never needed 350 diapers in a month, we would have been fine with 120 which would have been about the same dollar wise, but that was not legally allowed.) I suppose the idea was to motivate families to toilet train their kids? Honestly, nobody with a profoundly disabled child is dealing with a lifetime of diapers because of lack of motivation.

Here is there are not enough they put out a job on edjoin or contract out.

They started to get filled here when they increased pay and offered benefits. It's a tough job for sure and district need to properly compensate for those positions. $15 an hour is crumbs for what paras do

My primary insurance won’t cover my son’s wheelchair. He has CP, Epilepsy,TBI and more. Thankfully we have Medicaid and they cover just about everything. It’s ridiculous, I’m not out getting a wheelchair for the fun of it, he needs it