The people, places and experiences that have formed the puzzle pieces of my life
10 Top Things To Do When Your Disabled Child Turns 18
November 1, 2015
Before my son with autism turned 18 years old, I started writing a "to-do" list of items that I needed to accomplish in order to start preparing him for the rest of his life. I knew that he wouldn't be able to drive and that he would someday need assisted living arrangements, therefore finding transportation and an organization that offered housing assistance was imperative. My first step was to visit the websites of both local and federal organizations to check out their respective services and application criteria. As you can imagine this became quite an endeavor.
Since you are reading this post, I assume that your child is nearing or has reached adulthood in the eyes of the legal system. The 10 top items I have listed below are based on information that I have accumulated either through my own experiences or research. They are in no particular order of importance and do not represent any legal advice on my part. This list is merely provided to you to hopefully save you some time as you prepare your child to transition into adulthood. This is a very long list, and I have bolded each item to make them easy for you to find.
ITEM #1: State-Issued, Non-Driver ID Card OR Driver's License
Once your child turns 18 years old, s/he will need proof of ID for just about everything from setting up a bank account to getting a job. If your child will not be getting a driver's license, then s/he will need to obtain a state ID card. I will address the state ID card only.
Step 1. Go online to your local Department of Motor Vehicle's website and click on the link for information to obtain a state ID card. I found a very helpful website that provided each state's specific state ID card requirements and a link to each state's DMV website:http://www.dmv.org/id-cards.php. The website DMV.org enables you to click on your state to find out what documentation you will need to apply for an ID card, which forms to fill out, where to apply, how long IDs are valid, and the costs involved to get one.
Since we live in Nevada, I will provide you with an example of what is required in our state.
Step 2. To apply for a Nevada ID card, you must visit the Department of Motor Vehicles office in person. You cannot apply online or by mail.
Documents your child will need to bring:
A physical Nevada resident address.
A document proving your identity (e.g. U.S. birth certificate, U.S. passport, permanent or temporary resident card).
A document proving your Social Security Number, if you have one (e.g. Social Security card, W-2, U.S. military ID).
A completed Driver's License or Identification Card Application (Form DMV-002).
Any existing U.S. driver’s licenses, permits or identification cards.
Step 3. Visit your local Department of Motor Vehicles to complete the process. Make sure to check your state's DMV website to find out if you can schedule an appointment for your child. It will definitely make the entire process go a lot faster.
ITEM #2: Social Security Card
If your child hasn't already received a Social Security Card, it is definitely time to get one. The application process is easy. However, make sure that you schedule at least a two-to-three hour block of time to sit at your local Social Security Office (and don't forget to bring your child!)
Step 1. Go online at https://www.ssa.gov/ssnumber/. This website address will take you through the steps of applying for a new (or replacement) social security card.
Step 2. Documents you will need to bring for your child:
* Original Birth Certificate, AND
* U.S. Driver's License, State-Issued Non-Driver ID Card OR U.S. Passport
According to SSA.GOV, if you do not have one of these documents or you cannot get a replacement for one of them within 10 days, they will ask to see other documents, including:
Step 4. Bring your child's two proofs of ID and the completed application to your nearest Social Security office or Social Security Card Center. You can find your local office by clicking on: https://secure.ssa.gov/apps6z/FOLO/fo001.jsp.
ITEM #3: Checking Account
Once your child turns 18 years old, it is very important that s/he has a checking account. The checking account is needed to deposit any future employment paychecks and Social Security Supplemental Income (SSI) benefit funds. You will need to bring with you to the bank - your child, his/her state ID, Social Security Card, and a small deposit to open an account.
ITEM #4: Register to Vote
From the time our boys were babies they always accompanied my husband and me to the voting booths where they got to experience the importance of voting. So you can imagine what a big deal it was for my son when he finally reached the age where he was able to vote. It was kind of a rite of passage for him.
I found a website called http://www.canivote.org/ which was created by state election officials to help eligible voters figure out how and where to go vote. Simply select your state from the drop-down menu and you will be connected to your Secretary of State's website. The registration steps are easy to follow.
ITEM #5: Social Security Supplemental Income (SSI)
What is SSI and why you might consider having your child apply for this program?
SSI is a government program that provides monthly cash assistance of up to $733 to low-income people who are either aged (65 or older), blind, or disabled. This stipend helps eligible participants meet the costs of their basic needs of food, shelter and clothing. Information about this benefit can be found on the website: https://www.socialsecurity.gov/ssi/index.htm.
Unfortunately, we didn't apply for my son to receive SSI until recently and are still going through the process. Below are the steps we have followed so far and the approximate time frame for each. The remainder of the information was extracted directly from the Social Security Administration's website and/or my friends. I hope you find this information helpful. I have always found that it is nice to know what to expect.
Step 1. Schedule an Appointment to Apply.
You can apply for SSI benefits by calling the Social Security Administration office at 1-800-772-1213 (or TTY 1-800-325-0778 if you are deaf or hard of hearing) and making an appointment. With an appointment, one of their representatives will help you apply for benefits. It took us about two weeks to receive an appointment confirmation letter in the mail. Try to get to their office at least a half-an-hour before they open their doors so you can be one of the first 20 people in line. After your child's information is entered into their "Sign in" computers, you will be given a number and directed to sit down until your number is called.
Step 2. Documents you will need.
I probably should have listed this step as #1, because you have to make sure you bring the following documents with you to the appointment. It took me about a month to gather everything I needed for my son. The following information was obtained from the https://www.socialsecurity.gov/ssi/index.htm. website:
* SSI Application - They do not have SSI applications online. Most of the forms to apply for SSI are not designed for self-completion. You will complete this form during your child's appointment.
* Social Security Card
* Proof of Age and Citizenship - Birth Certificate (Original. Not a copy.)
* Proof of Income - Earned Income (Payroll stubs, tax return for the last tax year); Unearned income (award letters, bank statements, court orders receipts).
* Proof of Resources - bank statements for all checking and savings accounts; deed or tax appraisal statement for all property your child owns besides the house s/he lives in; life or disability insurance policies; burial contracts, burial plots, etc.; certificates of deposit, stocks, or bonds; titles or registrations for vehicles like cars, trucks, motorcycles, boats, campers, etc. A requirement for SSI is that the individual's resources be below a certain limit. This amount is $2,000 for a single individual and $3,000 for an individual and their spouse (whether the spouse is eligible for SSI or not), $4,000 for a child applicant with one parent living in the household, and $5,000 for a child applicant with two parents living in the household. There will soon be one exception to the general asset limit. On December 19, 2014, the ABLE Act of 2014 (standing for Achieving a Better Life Experience Act) was signed into law, creating a new tax-advantaged account under Section 529 of the Internal Revenue Code. If you want to learn more about this act, you can google "ABLE Act."
* Proof of Living Arrangements - Lease or Rent Receipt which includes information about household costs for rent, mortgage, food and utilities. Since my son lives in our family home, I designed a very simple invoice/statement that included our last name and address at the top, the respective month/year, bill to (my son's name), a list of his share of the mortgage, utilities (electricity, water, cable), and food consumption (his share = amount of each item divided by the number of people living in our household). Total everything up at the bottom.
* Medical Sources - Names, addresses, and telephone numbers of doctors and other providers of medical services to your child and the approximate dates s/he was treated; names of the prescription and non-prescription medications that s/he takes. Here is a link to the "Medical and Job Worksheet" where you can record and print all of this information: https://www.socialsecurity.gov/forms/ssa-3381.pdf.
* Work History - Job titles; type of business; names of employers; dates worked; hours worked per day and hours worked per week; days worked per week, and rates of pay for work s/he did in the 15 years before s/he became unable to work because of his/her illnesses, injuries, or conditions; description of job duties for the type of work s/he performed. The "Medical and Job Worksheet" includes a table where you can enter this information.
* Other Sources - If you are applying as a disabled child, or on behalf of a disabled child, they need the names, addresses, and telephone numbers of people (for example, teachers or caregivers) who can provide information about how the child’s medical condition affects his or her daily activities. Also, if the child has an individualized education plan (IEP) at his or her school, it is helpful to submit a copy of the plan.
HELPFUL HINT: Try to keep a copy of everything. Keep track of the dates you send information to them, or talk to them, as well as the name of the Social Security employee with whom you spoke.
Step 3. The Interview.
The interview took about an hour to complete; however it could differ for you. Their claims representative used a computer to complete the forms with the information we gave to them. I acted as my son's representative throughout the entire process because he had difficulty speaking for himself. The representative gave us a postage-paid envelope to mail her back any missing items. (Since my son had just graduated from high school, they wanted a copy of his transcripts.) We were told at the end of the interview whether or not our application was going to proceed to the next step.
Step 4. Daily Activities Questionnaire
Approximately one month after the interview was completed, we received two, eight-page "Daily Activities Questionnaires / Function Reports" - to be completed by my son and a third-party adult. We had 15 days from the date of the letter to return the forms. I am unsure if everyone receives this questionnaire/report.
Step 5. State-Provided Medical Examinations
Within two weeks of the receipt of our completed questionnaire, we received green-colored forms arranging for my son to be examined (for free) by two different agencies: a PsyD and a Medical Support company. The appointment date and time were prearranged, and we had to confirm the appointments via telephone call and return forms. According to their pamphlet, it is sometimes needed to have special medical examinations or tests before they can decide whether someone qualifies. I am unsure if this step applies to everyone. I will update this post upon completion of the exams.
The psychiatrist appointment took about 1 1/2 hours. My son and I met with the psychiatrist together for about 1/2 hour and she confirmed the information that was documented on the questionnaire that we completed prior to the appointment. I was then excused from the room and she spoke to my son for about 40 minutes. I asked him what they talked about and he told me that she asked him how to spell certain words and answer math-related questions. I was under the impression that their meeting covered mostly academics.
The Medical Support appointment lasted only about 15 minutes. I completed a one-page document that asked for the reason of the visit, and to write down his diagnoses. My son was then taken into a room and, according to his recount, was asked to bend his elbows and knees, checked his reflexes, and so on.
Both appointments were uneventful.
Step 6. Receive Notification from the Social Security Administration regarding SSI Benefits. As of this writing (January 20, 2016) we are still waiting to receive word from the Social Security Administration to learn if my son was approved for benefits and, if yes, the amount he will be awarded.
ITEM #6: Department of Aging and Disability Services
This department was created to administer long-term services and supports for people who are aging as well as for people with intellectual and physical disabilities to assist them in becoming more independent. Please visit your own state's website for the agency in your area that provides these services. I will focus this post on Southern Nevada's state agency called Desert Regional Center (DRC). As of this writing, their website is under construction and I am therefore unable to provide you with an active link. I will update this information at a later time. The information shown below comes from the Southern Nevada DRC brochure and my son's experience going through the process.
Step 1. Eligibility Requirements
To be eligible for services, the applicant must have a documented diagnosis of intellectual disability or a closely related condition such as Cerebral Palsy, Epilepsy, Autism, or other neurological impairment that is a developmental disability occurring prior to age 22 years. In addition, the person must have substantial limitations in adaptive functioning. Adaptive skill areas include: communication, self-care, home living, social skills, community use, self-direction, health and safety, and functional academics.
Step 2. Intake and Documents
Contact the DRC Intake Department at 702-486-7850 to schedule an appointment. An Intake Coordinator will meet with you and your child to complete a rather lengthy application.
Documents you will need:
* Immunization records for minors under 18 years old
* Birth Certificate
* Social Security Card
* Medicaid and/or other medical insurance card
* SSI award/denial letter
* Income verification - 3 of the most current paycheck stubs and/or copy of last year's income tax return
* Recent photo of the applicant (a school picture or small snapshot)
* Nevada ID or proof of state residency
* DRC Consent for Eligibility Assessment Form (they provide to you)
Supporting Diagnostic Documents:
* For Children (All school psychological reports/assessments)
* For Adults (All psychological reports/Assessments that document the diagnosis was onset prior to age 18 for MR, or age 22 for related conditions.)
* Copy of current (or last complete) IEP. If the individual is over 26, you will need to provide class transcripts with special education coding.
* Neurological assessments to support a neurological diagnosis, if applicable.
* Psychiatric assessments to support behavior issues and diagnosis of mental illness, if applicable.
* Medical report from a physician summarizing any current medical conditions
* Genetic report or genetic testing results to support a genetic condition, if applicable.
Step 3. Clinical Assessment
If your application was initially approved, you will be scheduled for a clinical assessment by a DRC-appointed psychologist. The assessment provides information that can be used to determine eligibility for DRC services, and/or assist your child's support team to develop training programs. It may help your child gain services, obtain a job, move to a community residential program, etc. My son's appointment took approximately two hours to complete. The information gathered at this meeting and his Intake Application were then sent to be reviewed by a committee.
Step 4. Notification of Approval or Denial of Services
After a determination of eligibility is completed, you will receive a letter in the mail. The elapsed time between the assessment and notification differs with every state. If your child is denied services, I believe there is an appeals process you can follow. You will have to check on the DRC website for this information.
Step 5. Eligible for Services
Once a person is found to be eligible for DRC Services, a DRC Service Coordinator will be assigned to your child. The DRC service coordinator will schedule a meeting with you and your child, if appropriate, in preparation for helping him/her to access the services that have been requested. The DRC service coordinator’s job is to coordinate all services and resources that will help your child to become more independent and capable of functioning fully as a citizen in the community. The areas that can be coordinated include respite, community living, vocational, educational, social, and financial.
ITEM #7: Transportation Services
If your child will not be able to drive a vehicle, you might want to begin training your child to ride on the local bus system. Once mastered, they will not have to depend on another adult to get to work, go to the doctors, or even to grocery shop. If you believe that your child's functioning level prevents them from safely riding on a regular bus, check with your state to find out if there is a state-sponsored shared-ride program. In Southern Nevada our program is the Regional Transportation Commission of Southern Nevada’s (RTC’s) Paratransit Service. Paratransit is a shared-ride, door-to-door program available for those who aren't able to independently ride on the regular bus system. I assume and hope that other communities also have this type of service available for their disabled members. If you would like to read in depth about my son's overall experience in going through the approval process, please check out my blog post called, "To Bus or Not To Bus. That is the Question... that needs to be answered." The following information was gathered from the RTC Paratransit website.
Step 1. Schedule an appointment to determine eligibility
Contact the RTC Certification Office at 702-676-1815 to schedule an appointment. You will receive a confirmation letter that will list your appointment date and time, location, and documents needed.
Step 2. Interview and Documents you will need:
* Picture ID issued by the Department of Motor Vehicles or other official agency
* Mobility Aid, if applicable.
* Medical documentation or specific information from a health care professional that concerns how your disability prevents you from riding fixed route bus service.
* Nevada Medicaid Card, if applicable.
The interview can vary significantly depending upon your child's ability level. Your child will participate in an indoor and/or outdoor Functional Ability Assessment Process.
Step 3. Letter of Eligibility for Services
Within approximately one month, you should receive a determination letter informing your child if s/he is eligible for Paratransit services. An ADA Paratransit Services Rider's Guide and a Paratransit Services Photo ID Card will be included with the letter.
ITEM 8: Selective Service (Adult Males only)
Do men with disabilities still need to register with Selective Service System? The answer is "yes." Almost all male U.S. citizens and male immigrants, who are 18 through 25, are required to register with Selective Service.
Men who have a disability and who live at home must register with Selective Service if they can reasonably leave their homes and move about independently. A friend or relative may help a disabled man fill out the registration form if he can't do it himself. These men with disabilities that would disqualify them from military service still must register with Selective Service. Selective Service does not presently have authority to classify men, so even men with obvious handicaps must register, and if needed, classifications would be determined later.
It’s important to know that even though a man with disabilities is registered, he will not automatically be inducted into the military. In a crisis requiring a draft, men would be called in a sequence determined by random lottery number and year of birth. At that time, they would be examined for mental, physical, and moral fitness by the military before being deferred or exempted from military service or inducted into the Armed Forces. They would also be eligible for any deferments, postponements, and exemptions available to all other registrants. A man (or his parents/guardian) would have the opportunity, at that time, to provide any necessary medical documentation needed for exemption. Were a draft to be reinstated and if your son received an induction notice to appear for mental, moral, and physical testing, if you provided the Military Entrance Processing Center that sent his notice with sufficient medical documentation on his disabilities, he would probably not even need to appear for the testing.
AT THE POST OFFICE Selective Service mail-back registration forms are available at any U.S. Post Office. A man can fill it out (leaving the space for his social security number blank, if he has not yet obtained one *), sign and date, affix postage, and mail to Selective Service without the involvement of the postal clerk. Men living overseas may register at any U.S. Embassy or consular office.
* Remember to provide your social security number to the Selective Service as soon as you obtain one.
REMINDER MAIL-BACK CARD A young man may also register by filling out a reminder mail-back card received in the mail. Selective Service sends this card to many men around the time they turn 18 years old. A man can fill out the card at home and mail it directly to Selective Service.
CHECK BOX Another way a young man can register is to check a box on the application form for federal student financial aid (FAFSA). A man can check "Register Me" on Box #22 of that form, and the Department of Education will furnish Selective Service with the information to register the man.
HIGH SCHOOL REGISTRAR More than half the high schools in the nation have a staff member or teacher appointed as a SELECTIVE SERVICE REGISTRAR. These individuals help register male high school students.
ITEM 9: Guardianship/Conservatorship
If you believe it is necessary to become your child's guardian, you will need to contact an attorney who specializes in this practice. There are several types of guardianships which can include the guardian being responsible for financial, medical and social decisions for the child/adult. Legal duties and responsibilities of guardians are outlined in your state law.
ITEM 10: Special Needs Trust
If you have been providing care for a child or another loved one with special needs, you’ve no doubt thought about what will happen when you’re no longer able to give that care. Of course, you can leave property to your loved one, but—as you are probably aware—doing so without some careful planning will almost certainly jeopardize his or her ability to receive benefits under the Supplemental Security Income (SSI) and Medicaid programs. Unless you make the right legal arrangements, benefits simply won’t be available until the inheritance is used up.
A special needs trust allows you to protect your loved one’s government benefits while continuing to supplement his or her special needs.
(Source: Nolo Press - Special Needs Trusts Protect Your Child’s Financial Future).
You will need to contact an attorney who specializes in this practice.