When you have a precious angel like Thomas or another child or adult with a disability, there are so many questions and things that need to be addressed, yet there is never enough advice or a handout to read. So in addition to sharing Thomas's journey and stories, we would like to pass on helpful facts and tips to help you and your families, or advice that can be shared with friends who have concerns or questions!
Helpful websites:
- www.publicpartnerships.com/
- www.ndss.org/
- http://massestatelawyer.com/blog/probate/disabled-child-turning-18-what/
- http://dmvnow.com/drivers/#disability/plates_assist.asp
- http://kidshealth.org/parent/medica/genetic/down_syndrome.html
When is comes to taking care of your child, sibling, or friend with a disability, such as Down Syndrome, certain actions need to take place. For one, getting guardianship of that adult, once they turn 18 years old. In fact the process needs to start a few months prior to him or her turning 18 years of age.
What is guardianship or conservator? This simply is someone who is taking full responsibility of the disabled person, physically and financially, allowing for you as the guardian or conservator to make key decisions for him or her, for instance in a medical situation. A lawyer would need to be hired for you as the one applying for guardianship or conservator and one for the disabled adult. Each needs their own form of representation to cover both sides, although everyone essentially works together for the common good of applying for guardianship/conservator. It's always good to have someone as a back up guardian/conservator, for instance I am that for Thomas, in case something was to ever happen to my parents, I would step into the role as his responsible party.
What's the difference between a guardianship and a conservator??
- Guardians - A guardianship is a legal right given to a person to be responsible for the food, health care, housing, and other necessities of a person deemed fully or partially incapable of providing these necessities for himself or herself.
- Conservators - A conservatorship is a legal right given to a person to be responsible for the assets and finances of a person deemed fully or partially incapable of providing these necessities for himself or herself.
These definitions were found from: http://www.expertlaw.com/library/estate_planning/guardianship.html
Of course their is a paperwork process, but it all essentially boils down to whether or not the disabled adult has assets or not, from either a "rich uncle" or has savings or checking accounts established in his name. If you are just receiving a SSI check monthly, that is not considered an asset nor income.
What is SSI? And Who Is Entitled To It?
Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues (not Social Security taxes):
- It is designed to help aged, blind, and disabled people, who have little or no income; and
- It provides cash to meet basic needs for food, clothing, and shelter.
Those who are entitled to it have to meet a basic set of guidelines and file paperwork to start the application process. The above definition basically is the guidelines for SSI. For us it took about a year and a half to get all of Thomas's paperwork straight, along with proof of his disability. Meaning he had to have documentation from all doctors that he had ever seen in the past and currently. Along with a psych exam, done with a psychologist specialist. Sad enough the process is very trying at times, because of others that have tried to "cheat the system." Don't worry if you ever get denied, like we did at first, please reapply! That is usually a "scare tactic" as I call it, along with dragging out the process to deter people from receiving aide. Sorry enough, but that is the world we live in! Fight for your special angels, they deserve it and are ENTITLED!!!
How To Get A Handicap Pass?
Other than going to a DMV (Department of Motor Vehicles,) which is always an unwanted visit, due to long lines and wait times, getting a handicap pass is pretty simple. Do not let your pride get in the way of getting a handicap pass, it is there for you to use to better assist the disabled. I am truly thankful for times when we go to places, such a amusement parks or crowded venues, that we can hang the handicap pass on the rear-view mirror! It is so helpful to park close for Thomas and anyone disabled, as well as safer! All you need to do, is have documentation from your family physician stating that the disabled person is disabled and in need of a handicap pass. Take the documentation into the nearest DMV, and fill out an application and pay a small fee, usually around $5, depending on the state. Trust us, we love our handicap pass!!!
How To Get Paid To Take Care Of The Disabled! (This is for real!! Because I do!)
There is this great company called Public Partnerships LLC, they cater to families who need help and assistance finding and employing care attendants for handicap children and adults. A case manager is assigned to the disabled person and their family, in which they set up a care plan that best meets the needs for all parties. A care attendant is hired by either the family or the company, and comes into their home and cares for them as needed. In the care plan, hours are determined, such as 25-50 hours per week, and from their the family can have the attendant work the minimum or the maximum number of hours as they need. The only tricky thing is, almost anyone can be hired, except the parents themselves. Meaning sisters, brothers, aunts, uncles, cousins, grandparents, etc. can be a care attendant, just not the mother or father. To be a care attendant, requires an application to Public Partnerships, once approval is mailed, you can begin working! Pay is about minimum wage, which isn't bad at all, especially in my case, to be able to spend the whole work day with someone I care most about. At the end of the two week pay period, a timesheet would need to be filled out with the care attendant ID, which is given to you upon employment, and the disabled's medicaid number. The employer, which is the parent or parents responsible for hiring you, will sign off on the timesheet. From there it is faxed into Public Partnerships and either a check is mailed or direct deposit is deposited. I love love love my job, and I'm so proud to be able to work for Thomas :)
There is this great company called Public Partnerships LLC, they cater to families who need help and assistance finding and employing care attendants for handicap children and adults. A case manager is assigned to the disabled person and their family, in which they set up a care plan that best meets the needs for all parties. A care attendant is hired by either the family or the company, and comes into their home and cares for them as needed. In the care plan, hours are determined, such as 25-50 hours per week, and from their the family can have the attendant work the minimum or the maximum number of hours as they need. The only tricky thing is, almost anyone can be hired, except the parents themselves. Meaning sisters, brothers, aunts, uncles, cousins, grandparents, etc. can be a care attendant, just not the mother or father. To be a care attendant, requires an application to Public Partnerships, once approval is mailed, you can begin working! Pay is about minimum wage, which isn't bad at all, especially in my case, to be able to spend the whole work day with someone I care most about. At the end of the two week pay period, a timesheet would need to be filled out with the care attendant ID, which is given to you upon employment, and the disabled's medicaid number. The employer, which is the parent or parents responsible for hiring you, will sign off on the timesheet. From there it is faxed into Public Partnerships and either a check is mailed or direct deposit is deposited. I love love love my job, and I'm so proud to be able to work for Thomas :)
National Buddy Walk
The National Buddy Walk, which is put on by the National Down Syndrome Society, is held each year in New York City, New York, in Central Park West, during the month of September! This is such a great event to begin with, but what is so exciting , is to be able to meet children and adults with Down Syndrome from all over the world. Everyone comes to this event, to walk for or with their special angel(s) in a 1 mile walk through Central Park. Fresh and healthy free snacks and food are distributed to all participants, along with many many booths with great information for the walkers and their families! Games are also available for the kids and adults, and can't forget face painting, guest speakers, and live music! My family and I have participated in approximately 5 walks with Thomas in the big apple! What a great opportunity and experience for families and their angels to participate in! Registration can be ahead of time or the day of the event!
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