Consultant to aid with securing services for special needs sibling moving to DC area

[Anonymous]

Hello,

My parents are considering a move from another state
to the DC area to be closer to their grandkids. They still care
for my adult special needs sister.

They are interested in hiring a consultant or advocate
who can help them navigate which state can best
serve my sister's needs (DC, MD or VA) and can also assist with
the transition of services and benefits.

Any help re contacts would be much appreciated and you
can respond to me directly.

Thanks so very much,
Tina Ashworth
cristinaashworth AT hotmail DOT com

[Anonymous]

If your parents are looking for services paid for by the governments, the waitlists in Virginia are very long. The families I know with adult special needs children do

1) Do it themselves and go through a non-profit and pay.
2) Do it themselves and pay privately.
3) Move to a state where the services are better, like MA.

For example:

One has a child who lives in a group house with 3 other special needs adults. The support is a 20 hour a week social worker for all 4. All is provided by a local non-profit. The "child" has assisted work, is able to drive his own car, but cannot handle the bills (his father does that) and needs help managing his medical issues (father does that). His assisted income pays for his rent and food, which is reduced. He has been in the program 20 years and they got in on a fluke. He is in his late-40s

One has a child who lives at home and has part time assisted employment, but the parents have to pay for transportation from a central location to the worksite and his paychecks are rarely in the double digits. The parents do everything for him. The program is provided by a non-profit. He is in his mid 40's.

One has a child about to graduate from the educational system (20 years old) and they plan on moving to Massachusetts to get better services.

[Anonymous]

OP - We are "your family," and I actually am from a large extended family in Massachusetts. I have heard that one can get services there very easily for an adult with a disability. However, we want to remain relatively close to our two other daughters who are both married, working and have two young children each in the DC area. We also lack the financial resources it would take to work with a private provider paying out of pocket for support of our youngest daughter AND be able to afford a home of our own in the DC area as my husband recently retired. We also want to give our youngest daughter the opportunity to live more independently with peers and the supports she needs - before it is a crisis driven situation in our old age and impacting one or more of her sisters.


There is no easy answer. First of all I would tell your parents that if they have a waiver for funding of any kind of services for your sister in the state where they live that is is not portable from one state to another, including DC, AND having a waiver does not bring you to the top of a state or local waiting list. Between Virginia and Maryland, I would opt to move to Maryland - where the overall waiting lists are about one-third of Virginia, and I believe we will see Virginia backslide on anything which happens once the DOJ scrutiny ends in 5-7 years. If they have the financial means to purchase a place for themselves to live and pay a non-profit to provide supports, I would also say that Maryland might offer more livable options for all.

I recently looked at another state close to DC which lists as having no waiting list, but soon found out that this is so because they assess the the disabled individual, get them into their system with a Case Manager and some supports such as say a Day Support program funding, BUT only give funding for a full waiver based on emergency situations. I was excited as it also offered us more flexible, less expensive living options,too, BUT then I got to thinking about whether or not we really wanted to give up what we knew was here in our community for our daughter - more or less go from the frying pan into the fire.

Back to your situation, if your parents have the financial means I would contact the Jewish Foundation of Group Homes which I believe is one of the best providers of housing supports for a wide range of disabilities in the DC area and is based in Maryland. I believe they would be a good source on the landscape of VA/MD. Additionally, they do offer a one-year transition program which might help to connect your sister to the right options in terms of work, volunteer work, recreation etc. that she would enjoy as well as build on independent living skills.

In general, your parents would do well to get information from other families who have an adult child with the same or similar disability to be able to get an insight in things such as:
- Names of the best private non-profit or for profit providers of the services one might need: residential with the needed support, job support, adult day program, recreation, family respite.
- Name of best public agencies to work with in an area. For example Virginia has Community Services Board which can vary in reputations from area to area.
- Get information to their specific questions or issues from the disability related organization related to your sister's needs such as The Arc, an Autism group, a Center for independent Living (physical disability), Mental Health group.
- Is there reliable para-transit?
- Are there social, sport, cultural recreation opportunities for your sister?

It is also important for your parents to find a place they will enjoy living in with the services they will need. It is not a perfect option, but they might also consider that one could live within as much as a two-hour access to DC and with the roads, train service now and even bus service right into Union Station and find an equal or better lifestyle for all three for the present. Also, with the idea of getting your sister on private agency waiting lists as well as the state they decide on waiver waiting list.