Almost the 2 week period after starting adult services.

Well, it has been an interesting 2 weeks. Willie has seemed to settle in relatively well with the facility. It took some time for him to get used to the new location -- new faces, new noises, new schedule. They let him get comfortable by letting him stay on the computer for a while each day (which he loved). Then they decided it was time for him to get to work. He gave them some grief, but after I suggested they put his schedule on his iPad, he would be fine (it might take a couple of days) but it would work. I had alredy set up a general schedule they just broke it down accordingly. He has seemed to settle in well with that. They also had an issue with him when it came time to leave. He would see others leaving and he was still waiting and would cry. We put a time in his schedule when he had to 'wait for a ride'. That seemed to pacify him.

The biggest problem we have had has been with transportation. He was approved for RIde and all along we have been pointing out their vans/small buses as his future transportation mode. Well, what I did not realize was that if there was no available van/bus, he would be going in a taxi!! I rode with him the first day (which was my plan all along) - in a taxi. He seemed Ok, said he wanted to go by himself. Then I tried him alone -- some days good, some days not so good. He was getting upset, crying, tried to open the taxi door at one point, while it was in motion. Got a call from the company -- now we have a safety issue so he has been temporarily suspended from the program. So the case manager and I are putting our heads together to find a solution - right now I drop him off and pick him up everyday. Don't get me wrong - I don't mind it but we are trying to give our young adults independence and teach them how to get around and how to deal with people outside the family. We will not always be here. But the trip is about 80 miles a day (round trip 2 times a day). Yes Will and I picked the facility!!! We tried a more local facility but they were not taking names at the time. This place is wonderful with a great reputation. The people are great and have been very patient and understanding. I can call at any time to talk to someone.
Anyway - one travel solution was for a family friend to take Will a couple times a week (we would pay for his/her time); the other is to meet up with the facility's own van they use to pick up more local clients, maybe at a halfway point. This way he can ride with his peers in a vehicle he is more familiar with. So now we wait to see which way to go. We are too far for their own van to come and get him. Then we can work Will into a RIde vehicle after he has settled in more, if we need to. Anyone out there with suggestions??

Update on our adult service programs: Slow but sure....

(Will hanging out doing what he loves)
Just some observations and thoughts; hope these might help people who will be starting soon with the transition process. Sometimes I can be a little dense in the head but stepping back I can see why it takes some time. It doesn't make the waiting any easier - like waiting for the other shoe to drop. If you can walk away with one piece of advice, I hope it would be - develop patience.

Looking back on the calender, I see our first meetings with the adult service providers we chose were in December, one in the middle of the month, one close to the end. Today, I went to pick up the 'purchase order' with Will's plans so I could sign them and took them to the second organization he'll be spending time with for their signatures. Then they go onto another place for respite services and then hopefully to the state for review and finalization. While I thought the process would go faster, I tend to forget about the holidays and the fact we were dealing with multiple locations. I orginally thought each place does their own plan and submits it to the state but nope --- there is one 'purchase order' that includes all agencies and plans. The second agency sends its plans to the first to be compiled. Respite comes next.
So originally, I was hoping that Will would start his program in the beginning of February. Since the state still has not received plans to review and it has one more stop, I would guess we might be looking at the end of February, which would be 2 months after leaving school. It would probably be less time if so many agencies weren't involved but I feel this plan is the way to go for him. It is a good thing that plans can be changed. I read through the plans before delivering them and they seemed concise and measurable, not vague and non-specific. Both these agencies have been writing plans for a long time so I feel confident that there should not be a problem. Just remember: patience is a virtue and have some faith in those you feel you trust.

Hate to start the new year with a rant but ....

As I sit here trying to get my head around the transition to adult services, I get confused. One meeting was held for planning Will's program with one agency for employment and they are now in the process of putting it together to give to the state. We are using another agency for community time and are going tomorrow for that meeting. My original plan with this second place is not going to take form as I had hoped but will be extra time - after his work hours are done and 'fun' time on Saturdays. I found out respite is part of these hours and the hours have to be planned out, even though I do not know when I will need respite. Bus transportation to and from his work program has to be applied for (this I figured and planned on) and have already done - it is in the state's hands. I guess what I am getting at is, I am very confused as to how the hours from his state plan 'level' are spent and what agency gets to plan them. Since the work program is his first or primary agency (in our case, the one where he will spend the most time), they plan first. Now the community agency plans next. Silly me is thinking the first agency will send the plan to the state to be evaluated then the second one goes and it too will be evaluated. Well, think again. The 2 plans need to be together to make sure they fit the 'level', that hours are used properly, the plan fits Willie (which I understand) and they all get put together under 1 'purchase order' for his 'level' to be paid. I understand this in one sense but I wish it had been explained better; I would have pushed for meetings with the 2 agencies to be held closer together. Another thing is that I am finding that the community agency is no longer doing respite - I have to go to another place!! I hope I understood that even though the Will's plan has to be state approved, it can be changed along the way. After the plan is submitted it may take 45 days to come back - yea or nea. Maybe... Will's caseworker told me the state is way behind and have let people go who do this??!! Government's great idea. Want to hear another one?? I called our local Social Security Administration (SSA) office the other day with a question about Will's SSI payment. The phone message prompts you to enter the person's extension you want to talk to. I did not have one, since I am not sure who has his case. I finally reach someone who tells me Will's caseworker is on another line and takes a message for her to call me back. So I get the worker's name and ask for her extension. Get this -- the person I am talking to tells me they do not give out extension numbers!! Really?? I remind this person that the SSA phone message prompts the caller for one; she tells me she knows but no one gives out extension numbers. Government wisdom!! Let's hope tomorrow's meeting is not over my head making me more confused and not getting us any closer to starting his new life in adult services, which keeps getting pushed out. Oh yes, by the way, his caseworker still has not called me back!!! Surprised?? Nooooooooo.

Financial Planning for a Special Needs Child.

I am not a legal professional and laws may vary from state to state. Please speak with a professional in your area for the rules and regulations that would apply. The following is just general information that I have come across which may or may not apply to your family situation.

Frank & I have been going over what to do, planning for Will as he starts into adulthood and adult services. We have consulted with a local attorney since we heard of 'special needs trusts'. I found out about it from another mom during a workshop. She gave me the name of her attorney and we met. Trusts, as far as my understanding goes, do not affect SSI payments or any services the special needs child/adult is getting. Social Security Administration said the same when I asked - it is not counted in their assets, even if you have a large sum of money there. The thought was that a 'pooled trust' is best. From the website of "Plan of Massachusetts and RI" (which is the group she suggested had the best plan for us) comes the definition: There are two different types of pooled Special Needs Trusts based on who “owns” the money that funds the trust. If the money belongs to the trust beneficiary, it will go into the MARC Special Needs Pooled Trust. The MARC Special Needs Pooled Trust is funded with assets belonging to the disabled individual, often obtained through an inheritance, personal injury settlement, or personal savings. If the money belongs to someone other than the trust beneficiary, it will be put into the PLAN of Massachusetts and Rhode Island Third Party Special Needs Pooled Trust. The PLAN Third-Party Special Needs Pooled Trust is funded with assets belonging to families or other third parties to benefit a person with a disability. The third-party trust can be funded immediately or in the future through an estate or life insurance. A trust with a group of people as trustee was the best plan since that way, our other sons (especially if they are not in the area) do not have to worry about paying Willie's bills that are not covered by his services. The group overseeing this trust would also take care of any paperwork, tax filings, etc., of course for a fee. What has stopped us at the moment, is that while we can set this up and not fund it, once it is funded then the fees start. Taking a look as to who may be putting money into this in the future, we fear - in our situation - that the fees would eat up the money in a short period of time. So right now, we are holding off doing this. Another website, "M & L Special Needs Planning" out of the Washington, DC area, offers some areas of concern that you may want to investigate for yourself, talking to a local professional. At my meeting, we did not address # 3. 1 - A Comprehensive Special Needs Financial Life Plan 2 - Government Benefit Counseling 3 - Insurance Needs Analysis Planning This website also provides some interesting statistics: Reasons for Special Needs Financial Life Plans -- Nearly 54 Million Americans cope with special needs and the rising associated expenses, according to the National Organization on Disability. Nearly one-fifth of all Americans—more than 54 million men, women and children— have a physical, sensory or intellectual disability, according to the National Organization on Disability. More than 41 million Americans, or almost 15% of the population age 5 and older, have some type of disability; according to 2007 Census survey data. Some 6.2% of children ages 5 to 15, or 2.8 million kids, have disabilities, the Census Bureau found. The U.S. Census Bureau says about 20% of Americans between the ages of 16 and 64 suffer some form of physical, mental or emotional impairment. Many of them are outliving their parents thanks to improved care medical technology. Over 75 percent of special needs adults are without employment (Grassi, S.G. Special Planning is Needed for Families with a Special-Needs Child. Journal of Practical Estate Planning, 39-51) Households containing at least one family member with a mental disability are also marked by the highest poverty rate, 32 percent, within the U.S. (Erickson, W., & Lee, C. Disability Status Report: United States.) The need is there to plan, this is something we can all agree on, but what type of plan is best will be best determined by a discussion with a professional who is familiar with looking long term and who knows the laws. As the attorney I spoke to said, if we wanted to speak to someone else - no problem; just make sure that person knows the rules and regulations and most of all the language that is used to set the trust up. It is specialized, especially since you do not want it interfering with any income and/or services that are being provided to your son or daughter. If you do set a trust up, anyone wanting to give money to the trust does exactly that -- writes the check, leaves an inheritance or life insurance money TO THE TRUST, not to the person. Even birthday money has the trust's name on the check. This trust plan is a good idea - make sure it is a good idea for your family.

Transitioning: Visiting Adult Service Providers.

The past few weeks, I have been calling local adult service providers to see which ones may be taking new clients in the next few months. As it stands, our state government is revamping the work system with these agencies. Some are allowing people to visit and others are not. So Will & I started our visits and saw 4 places. One agency let us come in to talk and get a tour but thought they were not taking names for a few months (Will does not leave school till December anyway). The other 3 were open to new clients. Note -- when you start this process, take your son or daughter with you. It is good to see their reactions, watch them to see if they are interested in anything, if they take note of any activity they see. Let the staff & current clients there interact with them. Ask your questions (see previous post regarding questions for service providers). Your questions should be answered and nothing should be rushed. You should even have time to sit and talk to the person in charge of intake. If the person is real good, they will even provide you with information you have not even thought of yet. They may know about other programs in other agencies and how they are the same or different - if not ask!! Make sure people ask about your young adult and what he or she has strengths in or weaknesses, what do YOU want your child to get out of the program. Ask if he or she can spend a trial day there. If at all possible, have your letter from the state which shows the level of service components that your son or daughter will be getting - based on the SIS eval that was done. Back to the visits -- we had 3 great ones, learning lots about each from some very nice people. Though Will was more interested in getting home, I did find him peeking at a few things in each place - wandering away to look. Anyway, when we got home, I typed out the 3 places we saw on his iPad. Our visits took place on different days, so when I read the names to him I mentioned something different about each place (NOTHING to do with activities or person we spoke to). One - the place we went to with your brother; two - the place that had 2 buildings; three - the place we went to today. I asked him if he liked any of these places -- yes. Point to one you like - he did; do you like another - yes. Point - he pointed to a second one. Then I did it again the next day, writing the names in different order. Same result. In actuality, these were the places I liked as well and thought would be a good fit. I had not mentioned anything to Will about these either. I also spoke with his teacher to see if she had any thoughts on these and she was in agreement with me about why I chose the 2 I did. Why? I liked the social activities at one because they had similar ones to school and a wonderful 'chill out' room when people get overwhelmed or frustrated (I want a room like this in my house). The other agency had a work program also similar to school that will be expanded on into the community - so I thought it would be a good transition for him. His teacher is the one who told me you can split services between 2 places!! So now we TRY to get into one for social activities and one for work. BUT ARE WE DONE?? NO!! GUESS - MORE PAPERWORK!!! So now the next phase... I will keep you posted.

Resources You May Want to Check Out

I was hunting around for information and came across some resource links that I thought might help. I still look around for transition and adult service information since Will leaves school in December. Looking at the National Organization on Disability website, they list some general resources.

**Americans with Disabilities Act Information Line which goes over laws and regulations, technical assistance, filing complaints, etc. **Disability.gov which has information on benefits, community life, education, emergency preparedness, etc. ** US Equal Employment Opportunity Commission (EEOC) which enforces federal laws against discrimination. **National Council on Independent Living that talks about consumer-driven advocacy for independent living of those people with diabilities. **Self-Advocacy Online lets you connect with self-advocacy groups. **Paralyzed Veterans of America addresses issues of those veterans with a spinal cord injury. The Protection and Advocacy System that appears did not have an active link. Don't forget to look at the top left of the werbsite page -- this has 3 links to other resources for employment, transportation, and emergency preparedness.