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[quote=Anonymous]OP - I have scanned the exchange in this post between you and others, and I have been thinking about where you all are at.

-  For  yourself, I do think the suggestion to get some counseling for yourself and to perhaps have a sounding board about your thoughts and concerns on your daughter and her future is a good one.  My closest friend also up in the DC area has a daughter in her 20s with a seemingly unending spectrum of illnesses who even though she is newly married still requires them to cover her health insurance and co-pays as she and her husband are in wage jobs and just could not do it.  She is a lot like your posts echo - a very supportive and concerned Mom.

- Most importantly for your daughter, I think establishing stability in your daughter's overall  health is the primary goal both short term and long term.  It just seems that she needs to stay in the DC area where her team of specialists is, where she can learn to access health care services in the future and where her family is to also provide support.

- I think you really should be in praise of  your daughter being able to handle the array of chronic health conditions that life has presented her including RA as well as she has.  It is may well be that the array of medications and the length and breadth of the illness that she has dealt with has had an impact on her overall functioning.   You have been a very wise parent in thinking outside the box and hooking her up to an on-line high school program.  I would focus on the success that she has had in that pursuit and just note that besides a high school diploma, there is also the GED certificate which could be done.

- In terms of the social side of being with her peers and also exploring various settings which might be work related in the future, the idea of volunteering in places where other teens in her community do so in the school year or more likely in the summer is a suggestion for the next couple of years.  Also, while she may not be in a regular high school, is there the chance to join in a church based youth group or other community group?
(Sorry we are not in the DC area for direct suggestions.)

- A community college would seem to be the ideal place
for further education for her, and I do believe that one age 16 or older who essentially is in a "home school" situation can take a class at such a site for credit or not.
Among the reasons a community college offers options for any student with a disability or chronic health condition I would note:

a-  Ability to start whenever one wants and complete flexibility in the number of credits/classes taken.  There is not the "lockstep" requirement of full-time.

b- Array of offerings in terms of non-credit and credit vocational or workforce skills programs.

c- Option to pursue an Associate Degree in a field or a transfer degree to a four year college.  In doing a transfer degree option again possibility to start out slowly and/or to focus on the areas of weakness.

d- Option to simply take classes for one's own interest at an time which might be the best combination for some with a part-time job or volunteer job.

e- A setting with like-minded age peers in which to develop social relationships who are most likely to be in the area in which your daughter would reside in the future.

f- A setting in which one can truly "explore" different skills sets.

- One area that may be very important for you to become knowledgeable about will be health insurance coverage for your daughter in the future if you see that her health overall does not stabilize.  The disability criteria for either SSI or SSDI is that one  is not expected to be able to earn at least the Substantial Gainful Activity or SGA rate per month (gross) of currently $1,070 for at least one year.

a- There is no question she could stay on the family health insurance through age 26 and with COBRA really to age 29.

b- At age 18, it might make very good sense to establish her as " a family of one" for SSI with a disabling condition starting before age 18 less for the financial support than to have access to Medicaid Health Insurance.  Note that Medicaid can simply be viewed as a secondary insurance to a family's to cover things not covered in full.  The hard thing is that her assets would always need to be limited.(And to qualify for Medicaid there is a  60-month "look-back" period on any asset transfer out of her name.)

c- BUT it is also important to see how Supplemental Security Disability Insurance or SSDI might come into play for her.  I do believe she has to work at least part-time to gain the quarters to have coverage on her own work  record.  Again, while the cash benefit would be very low, the key is that 24 months on SSDI and she would automatically qualify for Medicare.  **In her case at some point would it make sense for her to have both levels of coverage - Medicare as well as Medicaid.

- It is very complex in trying to figure out how to help a young adult with a challenging disability or health condition to become as independent an adult as possible.  If there was a known pathway in young adult transitions, it would be great, but unfortunately there is not.  But keys to finding a pathway are definitely an understanding of:

a- Education level attainable
b- Workforce training
c- Disability benefits and working
d- Health care coverage related to benefits and assets
e- Transportation
f-  Residential options
e- Social and recreational options

As you may guess we are pursuing a different and yet similar pathway for our young adult daughter.[/quote]

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