Turning 18 with a Developmental Disability in Washtenaw County, Michigan

Paula Saunders
2013/2014 (updated 2/2016)

A Parent’s Perspective:  This document is from the experience of one family who started the transition to adulthood process in August 2013.  These are the steps that were taken when their child turned 18.  Your experience may be much different.  This is not all inclusive and is meant as only a guide of some services.  There are a lot more details to each program than are reflected in this document.  Each person with a developmental disability is unique and requires different levels of care and support.  Not all people with a developmental disability qualify for all these programs.  The adult system is a system of eligibility and not entitlement.  The rules and names of programs are constantly changing in “the system” so check the facts.  The different programs do not communicate well with each other and you will find that you get different answers to the same question depending on who you ask.  The websites have a wealth of information.  This document is Washtenaw County, Michigan specific.  I’ve found that some of these programs vary from county to county in Michigan with how they are run and what they are named.  Please share this with others.  I hope it’s helpful.  Created March 2014 and updated February 2016 by P.S. – with input from friends and professionals too.

***(2016 Changes to note: CSTS (Community Support and Treatment Services) and WCHO (Washtenaw County Health Organization) no longer exist but are now called WCCMH (Washtenaw County Community Mental Health).  Also, MDCH (Michigan Department of Community Health) and DHS (Department of Human Service) have combined and are now called MDHHS (Michigan Department of Health and Human Services).  I mention these changes because as you do research some of the old names are on the different websites.  Not all has been updated.)

  1. Michigan ID – Secretary of State (SOS) – michigan.gov/sos
    1. The Michigan Identification Card is in place of a driver’s license for those who won’t be driving. It looks like a driver’s license and is just as valid for identification. Get the Michigan ID before age 18 while you are still the legal guardian of your child. There is no minimum age to apply.  Your child will need a valid photo ID for such things as opening a bank account.
    2. All Secretary of State Offices have a handicap desk that you can walk up to so you don’t have to wait as long.  You can also call your local office and ask for accommodations if your child has extreme issues with waiting.  Ask for the person in charge of the office you will be visiting to explain your child’s needs.  We did this and they were very accommodating.
    3. Yes, your child must go to the SOS even if they cannot sign their own name and don’t understand the process. They’ll take their picture and have them make a “mark” for their signature if they are not able to sign.
    4. You can find your local office and phone number on the Secretary of State website.
    5. There is a $10 fee for the Michigan ID which can be waived for certain reasons which are listed on the website.
    6. Go online to see what documentation you need to bring with you to apply for the Michigan ID. They have a checklist, form SOS-428.  Print this form as it is very useful.
  2. Selective Service registration for boys: sss.gov
    1. All United States boys must register for the selective service between 30 days before and 30 days after turning 18 or be in violation of the law. It does not matter if they have a disability and there are consequences for not registering that are listed on the website.  If they are recruited during a draft, that’s when they would go through letting selective service know they have a disability that would disqualify them from military service.
    2. If your child has a social security number you can register online. It really is quick and easy.
    3. You can also get a registration form at the Post Office and send it in.
    4. An acknowledgement card will be sent that the registration was done.
  3. Register to Vote:
    1. The Secretary of State is where your child would register to vote if they are able to vote. michigan.gov/sos
    2. Special voting accommodations are available such as a touch screen computer station or voting by absentee ballot. Contact your local office to make sure any accommodations are available.
  4. High School Diploma or Certificate of Completion?
    1. If your child graduates with a high school diploma then their public school years are done.
    2. If your child receives a certificate of completion then the public schools in Michigan will educate them through the age of 26.
  5. Lawyer for Estate Planning:
    1. Update your estate plan and be sure to include an amenities trust (some call it a special needs trust) to protect any inheritances your child receives. Your lawyer will guide you with the estate planning process.
    2. Remember, your child cannot have more than $2,000 in cash and resources to be eligible for many of the government programs. The trust protects the inheritance and is meant to enhance your child’s life.  The trust protects their eligibility of government programs even though they inherited money. Your lawyer will make sure the trust is written with the correct language and be able to explain why it’s important.
    3. We used: Joshua R. Fink in Ann Arbor.  Phone: 734-994-1077  Website: finkvalvolaw.com
  6. Washtenaw County Community Mental Health (WCCMH) Caseworker:
    1. Parents usually use the term “Caseworker” when the mental health system uses “Supports Coordinator”.
    2. Call WCCMH to open a case for your loved one with a developmental disability and have a caseworker assigned just before or at the age of 18. Call WCCMH’s ACCESS number 734-544-3050 for the intake or just to ask questions about services. They will guide you through the process.  This is the same number called for the Children’s Waiver for under age 18.  If your child has the Children’s Waiver before age 18, their current WCCMH children’s caseworker will help you set up a meeting with a caseworker with the adult services at WCCMH before your child turns 18.
    3. WCCMH’s website is: ewashtenaw.org  Choose àGovernmentàDepartmentsàCommunity Mental Health.  Here you can explore and find a list of services.
    4. If your young adult qualifies for services, they will be assigned a WCCMH caseworker to help them through the transition to adulthood and beyond. The caseworker will guide you through all the government, state, and county programs and help coordinate everything. They oversee the delivery of services.  They will visit at least monthly depending on what services your child uses.
    5. It would literally be impossible to know how to apply for all the services without a WCCMH caseworker. They do so much!!  There are many waivers and subsidies that we are not allowed to apply for but they can if your child qualifies.  The more severely disabled your child is, the more programs they will qualify for.
    6. The IPOS (individual plan of services) drives the services for your child in the WCCMH system. WCCMH will do an IPOS document for your child.   I recommend having a PCP (Person-Centered Plan) done before the IPOS!!!  It can help the IPOS more accurately reflect your child’s desires for their life.  Our son had a PCP done and the WCCMH caseworker attended and used those results in the IPOS.  Your caseworker can guide you on how to get a PCP done if you chose to.
    7. WCCMH is located at 2140 E. Ellsworth Road in Ann Arbor.
  7. Person-Centered Plan (PCP):
    1. Most of this information is taken from michigan.gov/ddcouncil
    2. Person Centered Plans are Michigan Law (Michigan Mental Health Code 1993). The law says that each person receiving developmental disability or mental health services can plan their own life.  The law also says any agency or worker who serves your interests must abide by the choices made in your adult child’s PCP.
    3. Person-Centered Planning puts your adult child in control of the choices that affect their life.
    4. PCP’s are not a part of the school system. We did share our son’s with the schools.  It’s a good resource.
    5. WCCMH can guide you to getting a PCP plan done.
    6. I recommend using someone that is not affiliated with the schools or WCCMH to do the PCP so there is a fresh perspective. It’s up to you.  We did invite both the schools and WCCMH to our son’s PCP and they all participated.  Most of the people that were part of our son’s PCP were friends, family, and others who know him.
    7. There are many good resources online if you search Person-Centered Planning.
  8. Guardianship or Power of Attorney:
    1. Once your child turns 18 they are a legal adult and you no longer have any legal say. Both documents are intended to protect your child once they turn 18.
    2. We have full (plenary) Guardianship so this section only covers that. The probate courts will decide if you will have full or partial guardianship based on your child’s needs.
    3. I do not know much about Power of Attorney except that it’s used a lot for young adults who have more capabilities but still need help with things such as financial, medical, or educational decisions. Power of Attorney is also much easier than guardianship.  Do an online search for more information.
    4. If you choose Guardianship: Petition the probate courts for Guardianship. Fill out a “Petition for Appointment of Guardian of Individual with Developmental Disability” form PC 658 (form on website) and mail it in. There is no cost to you.  Start this process about 4-6 weeks before your child turns 18.  You will get a letter confirming a hearing date.  The hearing should be held within 30 days of filing the petition.
    5. Once you file a petition, an evaluation to determine the need for guardianship will need to be done. WCCMH (Washtenaw County Community Mental Health) adult services does the evaluation called a “612 report”.  You can have the evaluation done before or after filing the petition.  If you don’t already have a WCCMH caseworker from the adult side of WCCMH, then filing the petition will trigger someone contacting you to do the evaluation.
    6. If your child cannot attend court due to their developmental disability, have a doctor write a letter stating why and have the court approve it. We had to do this. Our son’s psychiatrist from WCCMH wrote the note.  It would have been traumatic for our son to attend.
    7. You will have to testify in court and so will the person who did the evaluation.
    8. If the courts agree on Guardianship you will receive Letters saying so. You will have an answer the day you are in court and then the letters will be sent in the mail.
    9. FYI: Only one person can be your child’s legal guardian.  In our case, I’m the legal guardian and my husband is the “standby guardian”.  It’s written in the document in case something happens to me.
    10. Washtenaw County Probate Court, 101 East Huron Street, P.O. box 8645, Ann Arbor, MI 48107, 734-222-3072.
    11. Information and forms can be found on the website: ewashtenaw.org  Click on governmentà courtsà Washtenaw county trial courtà website:  washtenawtrialcourt.org. On this second website go Washtenaw County Trial Courtà Probate Courtà Guardianshipà Developmental Disability.  There is a very good description of the steps.
    12. FYI: If you are appointed guardian you will have to take a class at the probate court on how to be a guardian shortly after you are appointed.
    13. FYI: You will have to file an annual report PC 663 (form on website) if you are appointed guardian.
    14. FYI: The guardianship is good for 5 years and you must file a motion to extend before it expires.
  9. SSI (Supplemental Security Income) :
    1. Apply through Social Security Administration (SSA). You cannot apply on-line for SSI.
    2. Read SSA’s detailed definition of who qualifies to see if your child can collect SSI. SSI is for blind, aged, and disabled people with little or no income and resources.  When your child turns 18 your income is no longer considered.
    3. FYI: SSI is a federal program and the money does not come out of the Social Security taxes but from general tax revenues.  Michigan does pay a small supplement in addition to the federal amount.
    4. FYI:  Maximum SSI Benefits:  2016 – $733 per month federal (sent monthly) and $14 per month State of Michigan (sent quarterly).
    5. Website: socialsecurity.gov
      1. On the home page you can get SSA forms (labeled SSA-#) and SSA publications. There are lots of good publications on SSI.
      2. For more information: Follow Benefitsà Supplemental Security Incomeà now you can click around the page for detailed information.
  1. Ann Arbor Social Security office: 3971 Research Park Dr., Suite A, Ann Arbor, MI 48108.
  2. Ann Arbor SSA office phone:  1-877-402-0825, SSA national main phone: 1-800-772-1213
  3. FYI: If your child qualifies for SSI they will automatically qualify for Medicaid.
  4. FYI: Your child can work and still receive SSI.  There are income limits, rules and formulas to determine the amount of SSI.  SSA publishes what’s called “2016 Red Book” which explains in detail employment related provisions.  SSA publication number 64-030.
  5. FYI: NEVER have more than $2,000 in cash and resources in your child’s name or they will lose their SSI.  They cannot have over $2,000 in cash and resources to apply for SSI.  See SSA’s list online of what counts as resources.  There are many things that don’t count as resources.
  6. FYI: Your child can get up to the maximum SSI amount if they live in someone else’s household (including yours) as long as they pay their own food and shelter costs.  If you pay for their food or shelter it can reduce their benefits. It’s a 1/3 reduction if they don’t pay rent.
  7. FYI: SSI is not taxable income to your young adult.
  8. FYI: ARC of Michigan (arcmi.org) publishes a yearly Tax Guide that can answer many of your tax questions associated with supporting adults with a developmental disability.
  9. FYI: You can still represent your child to the SSA even if you don’t have Guardianship.  SSA doesn’t recognize Power of Attorney.  Your child will apply as their own person. You can assist your child with the SSI application without any legal document.  If your child wants you to help them in the future the SSA can appoint you as a representative as long as your child can sign a release form giving permission for you to help.  Request to be your child’s representative at the time of the SSI application.  SSA will help you fill out “Appointment of Representative” form SSA-1696.  A representative’s duties are different from those of a representative payee’s duties (see end of this section).
  10. Call SSA well before your child turns 18 to schedule an appointment to apply for SSI.
  11. Social Security will send you documents to sign. You’ll have to send the “Authorization to disclose information to the SSA” form SSA-827 back to them before your scheduled appointment.
  12. Fill out the “Medical and Job Worksheet – Adult” form SSA-3381 that they send you. Collect all the information requested on the Checklist sent to you.
  13. It’s recommended but not necessary to fill out the ADR (Adult Disability Report) form SSA-3368 before you go to the appointment. You can find the ADR online. It’s not the official SSI application but has much of the information that is needed and will speed up your appointment.  This report will also help you know what documentation to bring.
  14. They ask for A LOT of documentation and proof!!!! My philosophy is the more proof the better because you only want to apply once for your child. Here are a few things we took: Social Security Card, Birth Certificate, Michigan ID, High School ID, Medical Insurance cards, School IEP, Evaluations from WCCMH, Medical records showing disability, Guardianship papers, Medication information, Behavior treatment plans, Lists of doctors, Questionnaires (from our lawyer) on Capacity to do work-related activities filled out by a doctor.
  15. TAKE YOUR CHILD TO THE APPOINTMENT even if you are guardian! You only want to apply once.  If they can see the disability in person it will help.
  16. It usually takes 3-5 months to approve SSI payments. SSI payments are not retroactive like they used to be not long ago. SSI approval can take less than 3 months with a pre-approval.  At the appointment your SSA agent can pre-approve your child’s application.  In our case it took only one month for the first SSI payment.
  17. SSI payments are deposited in your child’s bank account. Have your child open a bank account before applying for SSI and take that information with you to the appointment. You need to bring the checking account number, including the banks 9 digit routing number to the appointment.  If your child cannot manage their own money a representative payee will be appointed.
  18. Representative Payee: A representative payee will manage the finances for your child.  Usually the representative payee is a family member.  The bank account will have the representative payee name on the account and checks along with your child’s.  Social Security has to approve who the representative payee is, if one is needed.  Only one person can be assigned as Representative Payee.  SSA will help you fill out form SSA-11 which is “the request to be selected as payee”.  FYI:  If you are representative payee then you will have to fill out an annual accounting report that is sent to you from the SSA.
  1. In-home help funding sources: There may be more??
    1. Respite – A WCCMH (Washtenaw County Community Mental Health) program – see #6
      1. For those who don’t qualify for the HSW waiver (see #12) this still gives a few hours for you to hire help. If your adult child cannot be left home alone this allows family to get a break.
      2. WCCMH administers this program. It’s only one of their many programs.
  • The respite hours can also be used for WCCMH approved community programs. (examples: Just Us Club at High Point School, Saline’s multiple Community Ed programs geared toward our kids, summer programs, …)
  1. Home Help – MDHHS – see #11
  2. HSW or “Hab” Waiver – Medicaid waiver – very limited program – see #12
  1. Home Help through MDHHS (Michigan Department of Health and Human Services): (must already have Medicaid to apply)
    1. Home Help is financial assistance if your child needs help with daily living skills and meets eligibility requirements. The money will pay either you or you can hire someone else with the money to help your child.
    2. To receive Home Help services, your child must be Medicaid eligible and require physical assistance with at least one activity of daily living. See the list of what counts as activities of daily living on the website.
    3. Call MDHHS and ask to schedule an appointment with a MDHHS Adult Services Worker to apply for “Home Help”.  They will come and do an evaluation for Home Help dollars.  You can’t even set this appointment up until after your child turns 18 and has Medicaid.  Our WCCMH (Washtenaw County Community Mental Health) caseworker set this up for us so I don’t know how hard it is to schedule an appointment.  I do know that MDHHS will assign your child with a MDHHS case number and come to your home for the evaluation.
    4. Before your appointment MDHHS will send you multiple forms to fill out. We filled out these forms: DHS-54A, DHS-390, DHS-27, and DHS-1555.  Forms can be found on the website if you are interested in seeing them before applying.
    5. If your child lives out of your home, the Home Help dollars are part of what pays for the caregivers/assistants.
    6. Advice: If your child needs help with any daily living skills apply for Home Help close to age 18.  Don’t wait!  It’s a step toward independence and it also protects your child. If you wait and something happens to you, then they will need those dollars to help them live independently but won’t have them.  It’s a long process and can take many months to approve.  If for example, your child is 28 and has never had Home Help assistance and suddenly they apply, it will be harder to prove they now need assistance.
    7. Website: michigan.gov/mdhhs  From the home page follow Adult & Children’s Servicesà Adults & Seniors à Independent Living.
    8. Address: 22 Center St., Ypsilanti, MI 48198
    9. Phone: Local office: 734-481-2000, State: 1-855-275-6424.
  2. Habilitation Supports Waiver (HSW): Sometimes called “Hab” Waiver.
    1. Must first be Medicaid eligible. The waiver is a Medicaid program.
    2. Website: michigan.gov/mdhhs
    3. The Medicaid Provider Manual explains the HSW or “Hab” Waiver. Do a search.
    4. There are a set number of Habilitation Supports Waivers in the state of Michigan. It’s very limited.
    5. If you have a developmental disability and meet the requirements for services in an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) you are eligible. Also you need to be Medicaid enrolled and live in a community setting.
    6. Some waiver services are community living supports (CLS), enhanced pharmacy, respite care, supports coordination, supported employment, family training and so much more. See the website.  The list of services is extensive.
    7. My son’s WCCMH caseworker applied for our son so I don’t know a lot about the process. There is a lot of behind the scenes magic that a WCCMH caseworker does to make everything work.  I believe that only a WCCMH caseworker can apply and you can’t.
    8. For those who had the Children’s Waiver before age 18 this waiver is the next step. This is where the community living supports (CLS) and respite hours come from.
    9. The biggest thing the waiver does for us is it pays for caregivers. The combination of “Home Help” (from MDHHS) and the “Habilitations Waiver” (from Medicaid) are what pays for 24 hour care for our son in his home (not ours). WCCMH will do an evaluation of how many hours are needed and it will also depend on the living situation.
    10. There are many provider agencies for caregiving/assisting or you can hire your own help (self-determination). Your WCCMH caseworker will help set up interviews if you want to hire an outside agency.

 

  1. SNAP (Supplemental Nutrition Assistance Program) formerly Food Stamps:
    1. Website: michigan.gov/mdhhs  From the home page follow Assistance Programsà Food Assistanceà This page has all the facts on how to apply, who is eligible, and details on the program.
    2. The SNAP program is applied for through MDHHS. You must apply online through MIBridges.  On the food assistance page there is a button that says “apply now MIBridges”.  We had the help of our WCCMH caseworker so I don’t know all the fine details of applying.  She helped speed up the process and made sure we were in contact with the right people locally.
    3. Your child will have another MDHHS case number that is specific to SNAP. Once your application is received MDHHS will contact you.
    4. There are many forms to fill out and MDHHS will need copies of many documents. MDHHS will let you know what forms they need from you.  We filled out forms DHS-3688 and DHS-3380.  Some documents requested were: guardianship papers, copy of license (parent), copy of Michigan ID (child), copy of insurance cards, copy of trusts, copy of bank account balances, …
    5. Adults with a developmental disability and low income can receive food stamps at age 18 if they live out of their parents’ home and independently. Adults with a developmental disability and low income who live with their parents can start receiving food stamps at age 22 and stay living at home regardless of their parents’ income.
    6. Remember that you cannot pay for food or shelter for your child to receive many of the government benefits. This is the reason to apply!
    7. You will receive a MI Bridges Card that has the food stamp money on it. There will be instructions on how to use it.  It is quite simple to use.
  2. Medicaid:
    1. michigan.gov/mdhhs Assistance ProgramsàHealth Care Coverageà Medicaid
    2. Medicaid is a federal and state funded health care program that provides healthcare coverage and much more! See the website for the eligibility requirements.
    3. Medicaid is always the payer of last resort. Ex:  Private health insurance is billed first, Ex:  Home Help (MDHHS) dollars are used before the HSW Medicaid waiver dollars.
    4. Your WCCMH caseworker will help you apply for Medicaid if needed. If your child is SSI eligible they automatically are Medicaid eligible and a card will come in the mail.  If you had the Children’s Waiver before age 18 the Medicaid will continue and you can keep the same Mihealth plastic ID card.
    5. If you have Medicaid you will receive a Mihealth plastic ID card. If there is no primary insurance through mom or dad then you will have to pick a Medicaid health plan.
    6. Medicaid will pay for medical expenses, medications, diapers, and so much more. Many of the waivers are Medicaid waivers such as the Habilitation Supports Waiver.
  3. Find Transition Workshops and go to them well before your child turns 18 to educate yourself! There are also workshops on SSI, Guardianship vs. Power of Attorney, and other good topics.  It seems like each year the information is becoming easier to access.  Here are a few resources that I used to find workshops: I’m sure there are more new resources since my research done years ago.
    1. WISD – Washtenaw Intermediate School District. Some of the classes for teachers are good information for us too.  org
    2. Local schools have a Transition coordinator on staff that is a great resource and will sometimes set up transition nights for information.
    3. Michigan family voices: michiganfamilyvoices.org
    4. Michigan Alliance for Families: michiganallianceforfamilies.org
    5. Washtenaw Association for Community Advocacy: washtenawaca.org
  4. Other resources that don’t work for us now but may help you when your child turns 18:
    1. Center for Independent Living: annarborcil.org
      1. Social activities and other resources. Most things are geared toward higher functioning individuals.
    2. ABLE Act: This will help individuals set up a bank account and have more than $2000 without it affecting government benefits. This is brand new and the rules for Michigan accounts are still being finalized.
    3. Housing options that may work for your son/daughter:
      1. Section 8 housing/housing choice voucher program – Washtenaw County has a huge waiting list and is currently closed to new people getting on the waiting list. Even if on the waiting list it’s a random drawing and not based on most needy.  www.michigan.gov/mshda
      2. Intentional Communities of Washtenaw – geared toward higher functioning people. www.intentcom.org
  1. MRS – Michigan Rehabilitation Services michigan.gov/mdhhs
    1. They can help your young adult get a job. Geared toward higher functioning individuals.
  2. Self-Determination. Do a search to learn what it is.
  1. Advocacy:
    1. Washtenaw Association for Community Advocacy in Ann Arbor: 734-662-1256,  washtenawaca.org
      1. Washtenaw ACA is our local ARC. www.arcmi.org is the state website.
      2. Local advocacy agency. Over the past 17 years they helped us advocate for school services, win a court case, and obtain necessary adult services.  It’s not always easy to advocate when things aren’t going well and Washtenaw ACA was there to help us.
    2. Michigan Protection and Advocacy Service (MPAS) : mpas.org
      1. A great resource of information. Their advocacy is more on the big issues and at a state level.

 

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