soon-to-be "parents" of borderline DD adult. help!

[germin8]

We have a very unique case on our hands. Basically, my DH's parents have both died years ago and we are trying to help my BIL get on his feet toward independence. He is 30 yrs old, never worked, and lazy... or so we thought he was a "good-for-nothing" guy... but since helping him we are realizing that he could very well be borderline developmentally disabled. He currently depends on us financially.

He went to private school & was passed... and we have realized he has never gone past addition & subtraction. He sorta got stuck w/ a 10/11 year old brain (so to speak).

So, now what? Can he become independent? What kinds of work will he be able to do? We are trying to get him on SSI & Medicaid w/ DD waiver but it is a months long process. He may be high-level disabled & have an IQ over 70/75 & not qualify for benefits...but we won't know til he is tested.

How do we deal w/ someone like him? We don't want him to influence our children in a negative way (he is just not the kind of person that is social & happy). His lifestyle is 100% opposite from ours & causes a lot of disharmony & stress. *ahhhhh*

We are seeking help for him... to function independently, but if he cants....*ahhhhh* help. What do I need to know.

Signed,
Lost

[Jen Muise]

If I were in that situation, I would get in touch with a group that helps developmentally delayed adults and see if they have any suggestions or knowledge of programs in your area.  Even if he doesn't specifically qualify for benefits, he might qualify to get involved in a work program or something aimed at integrating people into society.  Sounds like a tough time, your BIL is fortunate to have such caring people in his life!

[EarthRootsStarSoul]

Sounds like you are doing the right things - getting him tested and onto SSI and Medicaid.  Also like Jen said, look for community organizations for disabled adults, and you could look into finding a supportive group home for him.  At my last workplace, we had a developmentally disabled employee who came in every day to do simple tasks with a government-paid helper/caretaker. 

[Igraine]

That IQ is tough. Not low enough to ensure he has services, not high enough for him to be able to function independently.

ARC has a variety of adults services. Their workshops and clinics can assist with testing, job skills training. Rehab Centers also do testing that may help. All these things cost money so getting him insurance is probably the best option as the pp's stated.

Getting into living situations that cater to adults with DD can be the toughest.

In NY we have ACCESS-VR (formally VESID). Not knowing what state your BIL lives in it is hard to suggest specific things. Here in NY things are changing in the DD system rapidly, so I imagine some similar things are going across the country.

If you feel like giving more details, I would certainly be willing to do some checking! You and your dh are wonderful to be helping your BIL. He needs loving people to guide and support because I imagine he is pretty scared by all the changes too,

Good luck.

[AbbyGrant]

Unless there's some evidence from childhood like an old IQ test, I don't see how he'd qualify at 30 for benefits for a developmental disability/mental retardation. I think those have to be identified earlier.  There may be other things to consider though like metal health issues. Have you discussed any of this with your BIL? 

[germin8]

Thank you for your advice... glad we are headed the right direction... and some of the advice we hadn't considered (like group home & ARC).

And yes, we would love more help. What sorta details? Location?

We are in the state of Idaho (moved here w/i the last year). BIL is in Coeur d'Alene near the school/near help. But, really... we would move him anywhere that would benefit him the most... except Alaska, even if they "pay" you to live there.

My BIL did have an assessment done at ~18 yrs old. His IQ was 79. We have had these documents since my DH's parents died. We didn't know what they really meant and just kept the papers. Recently, we had him in Adult Basic Education (ABE) but they said he couldn't retain. So, we started googling to interpret the results of his test. We found that at age 18, he had a 4/5 grade level (that's 10/11 years old). That is exactly where he "maxed" out at at ABE. So his IQ may be the same... we hope to have him tested. But, SS would have to do it... since they do their own testing to determine eligibility.

I wonder if a group home would be a bad place... b/c his IQ is borderline and he needs good role models. But, it can't be us b/c he just hates doing what we ask him to do... and hates it that we have him do it again, correctly. He just hates it w/ us and doesn't appreciate what we do for him. Maybe this is to be expected, but we don't know this. So maybe this is just something we would have to always deal with...?

Yes, we wondered if he has mental issues too... we talk at great lengths about certain topics (something that should take 20 minutes can take 2 hrs!). I have talked to him about seeing a therapist since he is an adult and would have to agree to this... and he is okay w/ it... he understands it would benefit him. We will wait until SS determines eligibility first... then Medicaid.

[Igraine]

I asked about where you live because each state has their own guidelines. Even though I have some  experience in this field, I work in NYS which is very different. I did a quick search and I found a few things that may help. (Sorry if you already have any of this). 

Below is a link to the Idaho Standards so you are prepared for whatever information SSI and other organizations. Starting on page 126 breaks it down for you.

http://www.healthandwelfare.idaho.gov/Portals/0/Medical/DevelopmentalDisabilities/IDAPA%20standards%202011.pdf

The good news is it is an IQ or diagnoses by age 22, so it is a very good thing you held onto his paperwork. I would strongly encourage you to have your BIL request all his educational records (or your dh if he has guardianship) because I am sure there is probably more information you can use in his school record.

Below are a few more links:

http://www.healthandwelfare.idaho.gov/Medical/DevelopmentalDisabilities/AdultDDCareManagement/tabid/211/Default.aspx

http://www.healthandwelfare.idaho.gov/Portals/0/Medical/LicensingCertification/R%20DDA.pdf

http://www.idahoautism.com/coeurdalene.html

Groups homes are not always the answer, I agree. Some higher function developmentally disabled adults have the options to be in apartment programs with support staff who assist meds and provide on-call supports. There are other programs out there are very creative housing alternatives out. You and your dh just have to keep asking questions and keep searching unil you find a good program you all feel good about.

Good luck!

[germin8]

Wow, I will definitely look at all those links you sent me. Age 22? *whew* made the cutoff. I wish we could get records from his high school...they don't exist any more. even the evaluation we have reads that the school did not have adequate info...which makes me wonder if they were trying to 'hide' something. I will check out the sites next.

[Igraine]

That really stinks about the school! It might be worth contacting the State Education Department to see if they have any ideas. Did he receive any early intervention services, Rainbow Preschool, any other service providers at all (mental health providers, every hospitalized, even his medical records might have something from his pediatrician)?

I really think you and your family need an advocate. Even though you have the paperwork, it is still going to be tough. A couple of the links I put up there referenced family support/advocacy. 

[germin8]

No, because his parents and family never really saw doctors. He never had any special treatment/schooling. He was just passed (no child left behind???)...and then at age 18, his mom wanted him tested. So, this one document is all we have... w/ the WIAT & WIAS III results. Oh bummer...so you think I will have a hard time... *sigh* I will look into an advocate.

Update: I just now looked at the links...wow! Excellent links!
Edited by germin8 - 3/8/12 at 5:02pm

[germin8]

My BIL was denied SSI due to his case not being bad enough... although, I have yet to see the papers. My BIL is in another city.

So, how do I find an advocate? I couldn't tell by the link http://www.healthandwelfare.idaho.gov/Medical/DevelopmentalDisabilities/AdultDDCareManagement/tabid/211/Default.aspx where to find them. Maybe I don't know what I'm looking for.

Update: I think we will try to get him to Easter Seals, Goodwill Working Solutions, or TESH...

Edited by germin8 - 4/23/12 at 2:30pm

[Igraine]

Easter Seals could help with an advocate, it depends. Below are a few more links. I think you need to get some phone numbers together from these websites and just start calling places. Websites are not always transparent and sometimes you need to just start cold calling. This usually leads to other connections. Time consuming, but worth it. Good luck!

http://www.icdd.idaho.gov/advocacy/index.html

http://www.idahofederation.org/about/staff.cfm

https://www.facebook.com/pages/Idaho-Council-on-Developmental-Disabilities/183051905046313

Good luck!

[34me]

Vocational Rehab might be someplace to look into as well. He definitely has barriers to employment.

[germin8]

Thank you, again! Yes, I have called about 3 dozen people since this started. It's amazing how many people you have to go through to find what you are looking for.

[RemiJP]

It's a long shot, but did he have any additional tests done at the time of his IQ test, particularly expressive or receptive language? Often people with developmental disabilities score lower on language tests than IQ and it sounds like he could also be eligible for Idaho Medicaid with an expressive or receptive language impairment. 

[germin8]

RemiJP, I'll take a long shot any day. You are on the right track. Someone else recommended my BIL see a doctor and he may be able to get on disability if the doctor sees fit... which means, my BIL can get on Voc Rehab!  That would be good. Right now he can't get into Vocab Rehab. I'll ask about additional tests.

Easter Seals isn't in north Idaho, but they have a subdivision or something... They said they are for "high functioning" people (aka normal abilities) so I think those classes will be to advanced for him. We will still try it though. But, I think Vocab Rehab and TESH are our best choices for him.

[RemiJP]

Receptive and expressive language tests would typically be performed by a speech-language pathologist. You are being such a good advocate, hooray for you! 

[jaysmomanddad]

We are foster parents for two mentally disabled adults.  There are MANY programs out there to help you.  Both of ours came from an organization in our area that has day programs for the challenged, group homes and individual homes-like ours.  Miss P is 66 years old and never progressed beyond a 6 year old level, she never went to school, never had formal treatment,-back in those days-kids were just kept at home (if they were lucky), So she didn't recieve any services until her parents died about 30 years ago.  MrJay is 54, and profoundly handicapped.  His parents have also passed.  Check out the Offices of Mental Retardation in your area.  They should be able to give you advice and assistance.

[germin8]

jaysmomanddad: Wow, I am impressed that you help people like my BIL. What patience.

I will try your recommendation. I like to look into as many options possible. We sorta get "turned down" because his case is not bad enough. I am guessing his IQ is 79 (based on a test done 12 yrs ago)... but one qualifies for help if IQ is below 75 or 70. It's a tough spot.

You mentioned Miss P never progressed beyond 6th yr old grade. My BIL seems to be at 4-5 grade level but with no motivation. I am even more hopeful that he can get help... if you have any more advice in this area, do share!

My BIL has an appt w/ a doctor on Tuesday. We are hoping he says he is disabled and qualifies for Voc Rehab...hopefully get referred for a receptive & language test. Once on VocRehab, he can get a job coach at TESH. This seems to be exactly what we think he needs.

"You can lead a human to knowldege... but you can't make him think."

[RemiJP]

Just wanted to clarify: speech-language therapists typically administer two types of tests: receptive language (understanding a range of adult-level vocabulary words up to more complex paragraphs of info) and expressive language tests (producing grammatically correct sentences, providing accurate and adequate information when asked questions). Also, is his speech 100% understandable by all people, ranging from those highly familiar with him and strangers in the community? If he has trouble being understood when speaking, this could also be something that the speech therapist examines further.