Others Retired and Traveling With An Adult Child W/Special Needs?

[SnowGypsy]

I have sort of addressed the topic before.  We just had a another residential placement fall through.  It is very hard to find a group home as most are going to an apartment model which would not suit our son, one of the big reasons they are doing it I believe is to only have to accept higher functioning adults.  Now 31 years of age, having been mostly homeschooled, we find ourselves still parenting.  Waiting lists for services in other states can be very long.  I just called NM last week to verify and they have a 10+ year waiting list for day/residential services, a couple of other states I know of have even longer ones.  

Years ago when we were living in southern AZ among snowbirds/full-timers, we did see some adults like our son traveling/living with their parents, much older parents than we are ourselves.  We always wondered why they hadn't put them in programs, but we have come to understand this.  I am just wondering if there are many others out there like us.  We are really torn about what to do.  We would be doing this on a smaller budget (debt-free since 2000 and have savings for backup), but at the same time still capable of working and/or volunteering.  Should we find a placement for him, that would be great, but if not, we will continue to manage, and we have always done well one way or the other.

We have pondered the possibility of buying into one of the SKP parks, the SKP Ranch being probably the most economical for us, and we would love to be in a position to really seriously explore NM.  For us, it would be important to have a place, either leased or bought, that we could retreat to if needed.  We have looked at AZ, and they actually have no waiting list for services for our son, but that probably means he would be in a bigger city, I don't like big cities and avoid them like the plague.

For the record, our son is fine with being with us as he has seen the choices so far and been less than thrilled.  Having spent so much time with us, his behavior in public is excellent, I never cut him much slack when it came to behavior, especially in the public.

So, anyone else doing this and/or thoughts on our "situation".  Currently in KS.

 

 

[Kirk W]

While we have met a couple who do it, only once that I can recall. 

[SnowGypsy]

Thanks Kirk!  I do believe there are and will be many more as time goes on.  In the last year, we have met one couple and their son.  My son loves "big camper" and nature.

[jamtracy]

This has always been a concern for us. We have a 33 year old Daughter with special needs that will be traveling with us when we go fulltime in the next 4 years. My biggest concern is if we want to work camp will having a 3rd person be a problem? We currently live in California where there is no wait for services. We will lose some income but she will always receive SSI.

I know this thread started a few months ago but I hope someone will chime in with experience.

James

[Kirk W]

3 hours ago, jamtracy said:

My biggest concern is if we want to work camp will having a 3rd person be a problem?

This is a case where it will limit where you can go, but not totally block that avenue. We have friends who are no longer fulltimers that had an adopted son who was a victim of fetal alcohol syndrome. They found that he did much better when homeschooled, year around. As he got older they did manage to find a few work-camper locations where he too could do some of the work. The most easily found work-camper sites that he was not considered to be a problem was that of campground host in state parks. They did do some paid work-camping in a few RV parks but most did not want them with their son. Volunteer locations were usually limited but places like the state park camp hosts were pretty easily found. I am still in contact with the Dad so might be able to get somewhat better information for you if needed, but they left the road almost 10 years ago. 

[Smitty77_7]

Special Needs BIL, a lovely soul who very low functioning down syndrome, mid 40's now. Single Mom who provided 7/24 care. We built a home for her next door, where she and her son lived, for about a decade. This allowed us to always be available if needed, and to also observe more closely how 'Mom' was doing herself, from our almost daily interaction. 

I was sort of the 'outsider', who finally got my wife and other BIL together to start reviewing some longer range planning. Both for Mom, and BIL. The first thing my wife and other BIL and his wife had to decide - was if they were going to take on the life changing responsibilities of their Special Needs Brother, when the time came the Mom could no longer do so. That was lots of soul searching, myself included. Of course we love our Brother, but we all had to accept the reality that he really would be a 'life changing' force within our homes. As part of this, I volunteered (My schedule was more flexible.) to do alternative options research. Our Special Needs Brother was fortunate to be in The ARC program. Where he seemed to thrive. I worked with one of their councilors as I started about a 3 month review of options. I'll cut to the end of this. Where we had a sit down session, minus Mom, and reviewed the options I'd come up with. We all agreed on a option. And then I was nominated to approach Mom on reviewing what we felt was the right thing for her, and our Special Needs Brother. (In the previous 18 months, we'd had two occurrence of our Special Needs Brother having leg injuries requiring casts. Mom could not handle him by herself during these recoveries, she's not in great health herself, and then was in hear early 70's.) We all knew from previous conversations with Mom, that she was convinced that her Special Needs Son would only be safe with her. She had no 'long term exit' strategy in place. So that was the the 'climate/mood/sentiment' of what I would be approaching when I brought this needed conversation up with her. The term Tough Love comes to mind. Less then a 45 min discussion, with denial, tears, shouting, and absolute terror/compassion love for her Special Needs Son reflected in this time. These three main items helped turn the tide with her:

1) Explained that we all loved our Special Needs Brother, and all four of us (His other brother, and sister, and us two spouses.) had all agreed that between the four of us, we'd always have someone in town to look out for his best interests. But, that none of us would have him living with us 7/24. (Which Mom had just always assumed we'd do... stated this during our discussion.)

2) That it was a matter of safety not just for him, but also for her. That as she was aging, she was not able to continue to do what she'd always done. 

3) That we all felt it was time for him to transition to a Group Home. Doing so while he still had her for this time period. Explaining that she needed to think about him not losing a home that he'd known (Adapts quickly, as they had moved several times thru the years. With the decade next to us being their nicest and longest home together.), but also possibly a Mother at the same time. (This got to her the most... And days later, when she'd again talk to me without spitting fire my way, she said she had thought about her Son losing his home, and her, at the same time. And agreed that it would be an easier adjustment for him to do so while she was still able to be with him along this transition.)

This is in California, and as mentioned above, for now, California did/does seem to have more options then many other states. My research had actually resulted in one of The ARC programs Group Homes as being the best for him. We got him on the waiting list, and actually turned down spots that opened in other ARC homes that were too far away for Mom to comfortably (Well, our comfort:)!). drive to. And in 2013, opening came up, and he was two months from moving in - when Mom blew out her lower intestines. We almost lost her. 29 days in ICU, with us having our Special Needs Brother move into our home during this time. As luck would have it, I retired early 2013, and the DW was retiring in May. We had planned our Retirement Victory Tour of Alaska for 2013. So I was able to get John to his day ARC program, and pick him up every afternoon, and in between become Mom's Advocate working with the staff at the hospital she was in.  Here extended recovery, over a year of her now becoming the person we were all doing things for (Well deserved, such a lady she be!!). As she was still in the Hospital on the day of the move for our Special Needs Brother into the Group Home. My Wife, BIL, SIL and myself all were heavily involved in the few weeks of pre/post transition of this move. The funny part, is he adjusted to this easier then all of us!!! Many of the clients are members of the same ARC Day Program he goest to. (5 out of the 16 from this home (Large 12 bedroom specialty made Duplex (6BR)) are driven form staff members to the Day program each day. And, we go grab this still very much a family member of ours for the weekend visits, and all family functions. (He does love the food of the Holiday's:)!) And as a bonus, a now non 7/24 caregiving Mom, in better health now too, is getting to now go do things she's never been able to do. (Though, she claims she still feels guilty she is not taking care of him - even though she now also admits it's much better for him:)!)

====

OK. I tell this story not just for the OP. But for others who may read it too. As my DW and BIL allowed me to get more involved in helping with things, and finally Mom too - we found these short comings in place:

-Mom never got Legal Authority of a now adult child. Had not rights to spend his funds (SSI, as well as his Father's Military Pension and been left to him, vs Mom, due to Special Needs retained 100% of the retirement, where as Mom would have received the 50% Survivors Benefit.) No medical directive rights either. So Mom, DW and Other Brother all now legally able to represent him. (And with the change in laws about three ears ago. We now have his Retirement Funds going into a Special Needs Trusts, shielded from Medical factoring. The first few years, his 'Share of Costs' consumed all of his Father's Military Retirement Pension...)

-Mom still had never created either a Will, or a Trust. And her Daughter and other Son, were not authorized to legally help her if needed. So Trusts established, Durable Power of Attorney, Medical, etc. were all established. (The also shared a lock box with us of US Treasury Bills, that were so old and of the type - that they are not receiving interest. So, she allowed us to 'assist' in her financial planning for the future too. (At early 70's, this was really too late.). For almost 20 years, Husband lost to Cancer most likely caused by Agent Orange from the rivers of Vietnam tours, she had spent her Special Needs Sons income to cover both of their living expenses. She worked part time too, but the pension remained the bulk of their living support. Well, as mentioned above, when the Special Needs Son moved into the Group Home, his Share of Costs consumed all of this. So her financial well being took a hit too. (She now lives with us in our home, which is great. She is well enough for us to be gone for months at a time as we travel in the RV. And we're also able to let her live rent free with us.)

I want to be clear on this, long winded as it is. Nothing is meant as a criticism to how Mom handled things. She did what she new how to do. But, I share this as a warning and suggestion to others with Special Needs adults in their lives - to be sure you have all of the legal aspects covered. And think longer term and have mid term, and well as longer term, contingencies in place for not 'if' but 'when' your Special Needs individual will need to be on their own. 

OP. You mentioned the long wait in NM. You say AZ has not such long waits. You could possibly look into some of the Escapees Coops in AZ for yourselves, Benson is within driving distance of Tucson. Casa Grande is within driving distance to Phoenix. Benson is a bit further form larger cities, but also worth checking too. If your Son can be placed in an appropriate Group Home in one of these larger cities, you'd still be close enough to go grab him for weekends. 

You could also look into California too, as two parks are within reasonable driving systems to larger cities too. (Park of The Sierras has Fresno. Aquanga(SP?) had Temecula and region. And yes, they are expensive COOP's too:)!). But, you might find his SSI, an Medical (Californias Medicare) might work well for him here too... Or perhaps Benson in AZ for you, and California's El Centro for him? 

My salute to you both, and warm good thoughts as you all three work your way thru this process. And for sure, traveling with your Son is a valid option... Exist strategy in mind:)!

Smitty

(And my apology for being so long winded on this story. As I've become more involved with The ARC - I now am sometimes called on by other parents, siblings as they work their way thru the process. I've found that just talking to them about what we've all gone thru, and our thought process, has helped them. So while a bad writer, I tried to share more here then was probably needed - as it might help someone else too.)

 

 

[sandsys]

Smitty,

Your explanation was clear and helpful. I read all of it and, even though I am not in the same situation, similar things happened with my mother's dementia. My brothers found excellent care for her in Phoenix when they could no longer care for her themselves. Thank you for taking the time to share this.

Linda Sand

[SnowGypsy]

Thank you to all that responded.  I have guardianship for my son established when he became an adult, and am also his payee for his SSDI.  

We have tried day programs with disastrous results.  Five of them actually.  Each time we hoped the day program would work, and we could move on to looking at residential.  I realized that if they couldn't care for him adequately during 5 hours, well, not going to work for 24 hours for sure.  Better programs "cherry-pick", so my son isn't allowed in those programs. (We currently have an active case with HHS - Civil Rights Violation against the state for allowing this.  It was time if for no other reason than my final act here in the state.)

Our older son will take over guardianship at some point.  I brought up both sons to be "independent" of me, not momma's boys.   

I could move my son to a day/residential that is barely adequate and the transition would be complete or I can continue to care for him where he will have a real quality of life for as long as possible and then he might have to move to something barely adequate for a much shorter time and have a harder transition.  I choose real quality of life.  Although he is 31 years old now, I can't forget the first day I meant him as a 4 week old infant........

I really don't know if I will be full-timing at all at this point.  Waiting for years to do it, I just see people putting up barriers because of ignorance.   It was never my son that made my life more difficult, but the people I had to deal with because my son was in my life.  People have no idea.

I will have a decision soon, and will update any progress I made although it will probably take some time to sort out and get a direction.  

 

[Kirk W]

13 hours ago, SnowGypsy said:

I will have a decision soon, and will update any progress I made although it will probably take some time to sort out and get a direction.

I feel a great deal of empathy for you. Like several others here, I did have to deal with my mother as her senior dementia progressed but with a parent, we nearly always outlive them and are there as long as needed. With an adult child that is typically not the case so it is good that you are thinking of what happens when you can no longer care for your son. We have two good friends who deal with similar problems to yours. One couple has a Downs Syndrome daughter who is now living in a group home and while it was very difficult for them, eventually they did find a place where she is happy and she has now been there for nearly 10 years. Our other friends have an adopted son who is a victim of fetal alcohol syndrome, which can be very insidious. They have chosen to keep him at home, at least for now, with experiences much like your own. While I have some thoughts about what I think that I would do, I also know that such thoughts are much less difficult than is the experience of being there. The best that I can offer is my prayers. 

[SnowGypsy]

Thanks, Kirk.  I appreciate your words and prayers.  There have been a lot of hurdles, with time and patience, they have all been negotiated.

[jamtracy]

On 1/7/2018 at 5:45 PM, Kirk Wood said:

This is a case where it will limit where you can go, but not totally block that avenue. We have friends who are no longer fulltimers that had an adopted son who was a victim of fetal alcohol syndrome. They found that he did much better when homeschooled, year around. As he got older they did manage to find a few work-camper locations where he too could do some of the work. The most easily found work-camper sites that he was not considered to be a problem was that of campground host in state parks. They did do some paid work-camping in a few RV parks but most did not want them with their son. Volunteer locations were usually limited but places like the state park camp hosts were pretty easily found. I am still in contact with the Dad so might be able to get somewhat better information for you if needed, but they left the road almost 10 years ago. 

Thanks for your response Kirk. 

[AF25Y]

I'm so grateful to see this topic brought up! Our youngest son, Jon, has Down Syndrome. He will be 37 in June, and we are looking at the possibility of full-timing with him. 

As much as I dislike labels, I would say that Jon's disability is moderate. He is capable of spending time without supervision. He is relatively self sufficient, loves music and movies. He loves to travel, but is not a big fan of boondocking. 

One thing I especially appreciate about the Escapees parks is that many (if not all) allow 3 adults without additional charges. 

We will be keeping our house for now, (just in case) but are excited at what lies ahead. 

Wonder if there could be a BOF group for families like ours?

[Kirk W]

8 hours ago, AF25Y said:

Wonder if there could be a BOF group for families like ours?

I am sure that the management would welcome such a group if you are willing to start it. If you are, contact the office. 

[AF25Y]

Kirk, I'd be happy to! I think it would benefit a lot of people. 

[Kirk W]

3 hours ago, AF25Y said:

Kirk, I'd be happy to! I think it would benefit a lot of people. 

I will see if I can find out who you need to contact and get back to you on that. 

[AF25Y]

Thank you, Kirk!

[SnowGypsy]

I know there are at least a handful of Escapees that are looking at the possibility of full-timing with an adult child with disabilities, or maybe even a sibling, etc.  I did look briefly at what it takes to establish a BOF (had to log in as a member I think to see it),  and if there was enough interest, I would be glad to help with establishing a group.

After 5 different day programs, and realizing they could not meet my son's most basic needs coupled with the behaviors that he developed that I had to train out, just "no" to trying another.  "What happens after I die?"  Well, at least until that time, he'll be treated like a person and not a pet, and there is something to be said for that. (the basis of my decision to keep him with me)