The importance of Service Coordination!
At the age of 2 we set up Jacob with service coodination. What is service coodinator you might ask? A service coodinator is advocate for your special needs child. They assist with services such as respite, early intervention and community supports. They are advisors and referral agents to various supports youe child may need, from early years to adulthood. This includes setting you up for respite. Respite is where a qualified trained person will come and watch your child so you can get a break. They will also take your child out if requested. For example, Your child and their respite person can go bowling. A few other things a service coordinator might do, is go to your childs school meetings and advocate for your child. A service coodinator may apply to reimburse you for certain activites your child has done. They can be very beneficial to your child. Now in order to get these services your child will need to be on Medicaid or apply for Medicaid Waiver.
You will have to research your states programs. Most agencies should walk you through the process. If you would like to drop a link and a comment about your experiences in your state with service coordintation. That will be beneficial for others.
Note: The whole process is long and may seem complicated, but I suggest that every parent who has a child with special needs goes through it. Service coordination will walk you through everything your child may need through adulthood.
These are General Informative Websites (Not Based on any one state)
| Types of Service Coodination By The Depart of Health |
The Role of Service Coordination Care Autism Road Map |
What is Service Coordinaton and Why Does it matter? |
Guardianship...
Your disabled child is 18, now What? Now is time to think about guardianship. Last year we had to go through this process of what we thought we wanted Jacob's future to look like. It is scarey process and mentally draining. Jacob lived with us all his life and now we had to seriously think about his future. You need to think about the what ifs, and where do we want Jacob to go if something happened to us. The process is a lot of paperwork. You need to choose people who you trust in taking care of Jacob when your gone. They will oversee Jacobs financial situation and decisions, when Jacobs father or myself can not or not living anymore. We chose Jacob siblings since Jacob's father and I are already in our 50's. If you have a service coordinator, they will assist you with getting started and send you to the people you need to see to start the guardianship. That is why it so important to have a service coordinator. Their guidance in working with the system is so important.Guardianship is the legal relationship between a competatant adult and a person with a disability or someone who can no longer take care of their own affairs. The guardian can is legally authorized to make legal, financial, medical and healthcare decisions for the "ward" or the disabled person. This is for NY State. There may be othe rules to the guardianship in other states. You need to research these rules. There may be factors placed in the guardianship that may alllow the ward to make some decisions and but not all decisions. This is limited guardianship.
In most states, anyone who has the ward's Well-being can request a guardianship. Jacob's service coodinator set us up the an agency called Future Care. Future Care met with us 3 times and once with Jacob. This was to go over our rights for Jacob and share information with us. Since Jacob has two siblings as guardians, We had to list a first and second guardian. We chose our first guadian and they had to attend these meetings with us. Our second guardian is on standby if our first guardian can't fulfill that duty for some reason. Life is short and you don't know what will happen. That is why we we chose 2 guardians. Plus Jacob's siblings love him and want to help him as much as possible.
| What is Guardianship? By Guardianship.org | Does my Child Need a Guardianship? By Special Needs Alliance |
Guardianship for Young Adults. By The Simple Dollar |
You will discuss also money and trusts. I am all about protecting Jacobs money, so medicaid does not take it. So we are currently looking into an "ABLE" account or possible other accounts.
| Spotlight on Acheiving a Better Life Experience (ABLE) Accounts |
ABLE Accounts National Disability Association |
Pros and Cons of an ABLE Acount |
Future Care set us up with an attorney. At the attorneys office we discussed our wishes for Jacob. Jacob attended this meeting, though he did not understand what was going on. Because this was during covid, the attorney wrote a statement to the judge stating Jacob is autistic mod-severe and his parents want to be grant guardianship to their other children if something. should happen to his parents. We did not have to go to court and we were granted guardianship. This in New York State. In the end it was a long compiicated process.
Self-Direction
Once you have guardianship, Jacob's father and I reccently took a class on Self -Direction. Self-Direction is where Jacob can choose his own services so he can live the life he wants. When you have have self-direction your services increase. You can choose the right supports for you. You can choose the staff you want to work with you and a schedule that works best for you. Example of things you can Self-DirectJacob service coordinatior has apply for this programs for Jacob. For NYS it is based on a budget. So his Service Coordinator will be setting us with an appointment with a broker.
| Self Directed Services by Medicaid.org | Self Direction-What it is and What it is not. | Self-Direction.. How it Benefits You or Your Love One |
That is where we are in Jacobs Process. I know it is a lot. I can barely process it all myself. I am not an expert on this topic. I just know what we are currently going through. We live in NY, so some of this based on our states program.
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