Planning for the future (care and money)

[hillview]

If you think that your DC may need more support after age 18, what steps have you taken to account for that? What about wills and "wishes"? It is REALLY hard to know how DS2 will grow and mature and what his ability will be, I feel like it could range from pretty normal to pretty dependent or less able to deal and support himself in the outside world.

[Gena]

We're concerned about protecting DS's future eligibility for things like SSI, County Disability Board Services, and other services.

To qualify for adult services, DS would have to have little or no personal assets. So We've talked with Special Needs Financial Planners about setting up a special needs trust to keep funds out of his name and changed our wills so that money goes into the trust instead of to him (not that there will be much to inherit). We had to explain this to family members (grandparents) so that they know cannot plan to directly give DS large gifts of money for his future.

In our state, adult services are handled through County Boards. There are different services for adults who where disabled as children and those who became disabled in adulthood. So we have started the process of documenting DS's disabilities with the County Board. This also lets us get him on the waiting list for adult services. There's a 10 year waiting list for some services, so it's important for us to start now.

We are working hard to keep DS on the diploma track at school because that will give him the most options for his future. We've had to dig in our heels on that with the district. We realize that DS may not be ready to graduate HS at age 18 and we are OK with that. The law says he has until age 22, and if that's how long it takes, that's fine with us.

We have gotten a bit of information on a some post-secondary school options. The Bureau of Vocational Services has programs to help disabled young adults transition from high school to job training. We've looked at what programs might be available and appropriate at local colleges. And we've heard about a local non-profit alternative to college that focuses on job skills, education, and job networking.

The facility where DS goes to special needs childcare during the summer also has adult programs, including job training and adult daycare. I don't know if he will need that level of services, but it's good to know it's there.

We really don't know at this point what level of services and support DS will need. So we are focusing on knowing what the options are and protecting his eligibility for both services and education.

[hillview]

Gena, Thanks so much for providing this detail. HOW DID YOU GET SO SMART AT THIS? seriously. How? I signed up for the wrightslaw seminar (thanks for that suggestion). How do you get so smart? Do you have someone you hired to help you? Loads of research? Thanks!

[Pepper]

Gena, Thanks so much for providing this detail. HOW DID YOU GET SO SMART AT THIS? seriously. How? I signed up for the wrightslaw seminar (thanks for that suggestion). How do you get so smart? Do you have someone you hired to help you? Loads of research? Thanks!

Everything that Gena said. I haven't set up a special needs trust yet, but the way my own trust is set up the kids wouldn't inherit until they are 35 (money needed prior to that for college, buying a house etc. can be obtained from the trust, the trustee would just have to approve it). By that time I hope I'll know if DS can live on his own! In the meanwhile, I'm planning to keep his own money below the threshold - which is a few thousand dollars, I think.

In my state (MA) you can apply to Department of Developmental Services on behalf of your child, but then you have to re-apply for them when they become an adult. You can start the process when they are still 17 so there shouldn't be a gap in services. Not all states do it that way, sometime you have to wait until they're 18 to start the application & there's a break in services.

[Gena]

LOL. I love to do research. I rarely read fiction, so a lot of my "free time" goes to research. And DH and I do a lot of networking. We are active in our local autism/special needs community. I learn a ton from other parents in our local autism group. I'm on the mailing list for our special ed regional center, so I get notices about parent trainings, info nights, etc. and attend as many as I can. We meet service providers at special events like the local autism expo. DH and I have bins full of information on all kinds of providers, products, and services. The trade off is that my house is always a mess.

A few years ago I realized that we are not just raising a disabled child, we are raising a child who will grow up to be a disabled adult. Then, I kinda had a panic attack when DS turned 9 and I realized his childhood was half over. That was when I really started researching adult services and what happens when he turns 18.

Another thing I strongly believe in for planning for the future is helping DS develop self-advocacy skills. We work on helping him to understand his diagnoses and challenges and to identify what extra help he needs and why (i.e. "the noise hurts my ears, so I need my earplugs" or "I feel overwhelmed and I need a sensory break". ) . We don't let him use his disabilities as an excuse for things, but we are teaching him to understand and to explain how his needs and abilities are different from other people's.

[hillview]

Gena I had the same panic attack 2 nights ago.

Pepper do you have MA links handy?

I told DH that at some point I may need to go part time to make sure that both kids (but really mainly DS2) get what they need. DH agreed...
Thanks!

[Pepper]

Find your local DDS office through this link:

http://www.dmr.state.ma.us/frmMain.asp

DDS homepage:

http://www.mass.gov/eohhs/gov/departments/dds/

Application for DDS services:

http://www.mass.gov/eohhs/consumer/d...plication.html

Is your DS currently on MassHealth and receiving wraparound services? If so, your care coordinator can help you through the DDS application process.

I attended a workshop on eligibility for DDS services, as well as other services, that was presented through EMARC, which is a local agency that coordinates with DDS to provide many services to families. Depending on where you live the specific agency that provides these services will differ; I can't find the information that lists all of them but if you call EMARC and ask for family support I'm sure they could hook you up with the right people. That agency can also help you with the DDS application.

Finally, the Federation for Children with Special Needs can be a great resource for applying for Mass Health and, I imagine, DDS. They also sponsor education programs for parents: http://fcsn.org

Hope that helps!

[hillview]

thanks pepper, no we are not on masshealth. I will take a look at the links and material!

[LBW]

The Wrightslaw seminars are great. I attended one last year. Even though I research and read a lot, I learned so much about what I needed to do for DS2 in that one day.

Our school district holds meetings for parents of special ed kids every 2-3 months, and I try to attend when I can. The last one was about transition services. I went even though DS2 is only 8, and it was eye opening. A couple of the other parents were dealing with kids aged 16-17 and one family had a child in mid 20s. My two big take aways were the need to plan financially so that the child doesn't have assets in his/her name at age 18 and the fact that you'll need to be your child's advocate. There are a lot of services available through the county, including assistance with medical insurance/health issues. But, they seem somewhat uncoordinated and unconnected.

DS2 is doing much, much better this year after 6 months in a great program at school. I'm hoping we won't need to access adult services, but I'm glad I'm aware of them in case we do. We would definitely need to start preparing for a transition years in advance if it was necessary.

I hear you on the going p/t thing. Even though I have very flexible hours and work from home, maintaining a f/t job, running a household, + managing 1 (maybe 2) special needs kids (plus a third child) is mentally and physically exhausting. I'm currently taking some time off and trying to figure out whether I can cut back on my hours. I think it may be necessary, at least for the next year or two.

[Pepper]

thanks pepper, no we are not on masshealth. I will take a look at the links and material!

Your DC can qualify for MassHealth, even if your family income is too high for you all to be on it - you send in a Mass Health application, as well as a separate Disability division application. You do have to pay for the coverage but in our case it was totally worth it. DS has access to services he couldn't otherwise get (therapeutic mentor, in-home behavioral) and there are no copays for covered services or prescriptions. HIs current services are time-limited, though, since it's all insurance-based, which is why I'm going to do the DDS application.

PM me if you want more info about applying for MassHealth.