Timeline

TIMELINE: Navigating through Autism Life in Northern New Jersey

Hello, adventuresome family with involvement on the Autism Spectrum!

Granted, every family and every individual on the Spectrum is unique…but if you live in New Jersey, you must be aware of certain realities if you want the best chance of maximizing and optimizing the outlook for all family members and obtain the very best outcomes at each age, as everyone makes progress in development and education through the years! Navigating through these realities is essential…

Post 21 Club has, over the years, received numerous requests to create an online “Timeline” which would condense and simplify the basics of the things that a family with a loved one(s) on the Spectrum should plan, do, and accomplish over the years, and when they should be done.

Such things range from the legal, financial, medical, developmental, and educational realms, which we endeavor to depict on our Timeline. Since each family has different circumstances, you can branch off the timeline at any point by clicking on appropriate links to other parts of this website.

And the Timeline is interactive as well, so email your thoughts and suggestions to info@post21club.org; we value everyone’s thoughtful input! To begin, simply click on the age button of interest to you, and explore!

BEGINNING AT AGE 14- THE START OF “TRANSITION TO ADULT LIFE”

Age 14

Age 15

Age 16

Age 17

Age 18

Age 19

Age 20

Age 21

Age 22

Age 14

General Guidance and Recommended Actions

We’re starting our Timeline at age 14, not 21, because transition to life after the Education Entitlement essentially begins around age 14. The transition phase continues through age 21.

1. Child Study Team (“CST”)- Ramp up meetings and discussions with your school district’s local assigned CST. Focus on and develop your teenager’s Individualized Education Plan (“IEP”) with your CST, and strive to line up appropriate services. Click here to download Autism NJ’s “Planning the Transition from School to Adult Life” pdf document for an excellent summary and resulting understanding of the Transition process; the more you can derive from established supports and services in your surrounding community, the more your loved one and your family will benefit! It’s good to know your entitlement and rights under the New Jersey Administrative Code (long document!) click here

2. Your assigned Case Manager- employed by the local school district, is responsible for the planning process, so go after him/her! Your CST must be knowledgeable, competent, and fully engaged and committed in your family’s (and your loved one’s) case, as soon as your child is of age to be accounted for in your residence’s school district (pre-14!). If any of this is not the case, you must advocate for your family and file an urgent complaint with the local Board of Education; your family has too much to lose to risk remaining with an incompetent CST.

3. Make sure your CST is positive and competent in serving your loved one and your family’s objectives for him/her. Develop a plan that gives you confidence that you’re getting the best education, supports and services, and go after them! Make sure the district delivers what your loved one and family deserve!

4. Register with New Jersey Division of Developmental Disabilities (NJDDD, or simply “DDD”)- It’s never too early to determine eligibility for NJ Division of Developmental Disabilities services, funding, and programming. Make sure your CST and Case Manager provide all the assistance to you that by law they are obliged to. Click here for myths and facts about the DDD.

5. Recreation and Social Events- Your loved one(s) on the Spectrum crave “connectness” to those around them just like the rest of us, except they may not be as able to express this need. Stay connected and seek these out! Our interactive website and events calendar can help.

6. Transition Meetings and Workshops- Contact and visit the Bergen County Special Services C.A.P.E. (Collaboration / Access / Planning / Education) Center at 540 North Farview Avenue in Paramus, New Jersey, 07652, speak with the Director, sign up for Seminars and Workshops, and get on C.A.P.E.’s email list! It is strongly recommended to attend various transition meetings (e.g., provided by CAPE, the Arc of Bergen and Passaic Counties, Family Resource Center, Post 21 Club, and others). In “broad strokes”, this will help to prepare families for what they will need to accomplish when their child ages out of the pre-21 IDEA Educational Entitlement. Attending specific seminars on Guardianship, SSI, Medicaid, etc. before age 18 can be very helpful.

7. Individualized Education Plan- This living document should continue to be updated and serve to help procure the supports and services that your loved one(s) on the Spectrum have been determined to need, and these should continue all the way through age 21! This is done through your CST.

8. Division of Children and Families (DCF)- Currently, school age children can register with the Division of Children and Families (DCF) and may be eligible for certain services through PerformCare (respite, summer camp, behavioral help, etc.). We are aware that some clients have experienced that the DCF has a heavy workload, so please send your experiences and comments to info@post21club.org for possible inclusion here on our Timeline.

Age 15

General Guidance and Recommended Actions

1. Education- Keep an open mind! Your loved one is capable of learning and absorbing A LOT more than you may think, or than it may appear. So don’t focus all your family’s energies on Applied Behavior Analysis, Obsessive-Compulsive Disorder, making him/her act like everyone else- your child deserves a full education like all other teens, and the right to be different! Explore his/her subjects of interest, without prejudice.

2. Medical/Psychological- certain medications, competently prescribed, can indeed enhance your loved one’s quality of life and educational development. Be sure to have a competent child psychiatrist as part of your team, and see him/her regularly throughout the year. For sexuality education, click here.

3. Physical- Be sure to make physical activity a part of your teen’s life and daily routine. Good health is paramount to the best quality of life.

4. Legal- Financial Planning / Guardianship Planning / Special Needs Attorney

5. Start asking around about Special Needs Attorneys (“SNA’s”)- they vary in their styles, backgrounds, hourly rates, and suitability for your family.

6. If appropriate, start your Estate Planning early. The right SNA can lead you through the legal maze and get you successfully to the other side- meaning having your Estate(s), wills, Special Needs Trusts properly set up so that you will have few regrets many years later.

7. Insurance- Investigate what supports and services may be covered under your current family medical policy, and/or if your policy should be adjusted to better cover your loved one’s Special needs.

Age 16

General Guidance and Recommended Actions

1. Supplemental Education: Start of Services under Individualized Education Plan “IEP”

2. Future employment possibilities: Reach out to Division of Vocational Rehabilitation Services “DVRS”- for an interview to determine if there are possibilities to positively connect and one day secure meaningful employment. Often, the DVRS is not a fit for our population, but there are some exceptions. This is a step which must be taken, in any case.

Age 17

General Guidance and Recommended Actions

1. Start educating yourself about taking the NJCAT! Best for guidance is C.A.P.E.- see Age 14, above. The NJCAT is the prime determinant in setting your loved one(s)’ annual Habilitation, Supports and Services budget (Tiers A-E). Filling it in without “prior training” may lead to insufficient needed resources!

2. Day Habilitation / Employment Training Programs- NJ is a work-first state! That means the state will stand behind your efforts to get your loved one into productive, paid work! Tour all the Day Programs that you possibly can to get a sense of which program may be a good fit for your adult child after graduation at age 21. Remember, these programs are far outnumbered by each year’s graduating class so there may be either no openings or a wait list at the program(s) of your choice. It’s good to get familiar with the people running these programs. You owe it to yourself AND your loved one!

Age 18

General Guidance and Recommended Actions

1. Legal Guardianship- legally, the ability to make one’s own legal decisions transfers to the individual at this age, unless Guardians have been duly assigned by the NJ Courts. More often than not, in our population, parents opt to become Guardians of their loved one(s) with Autism, as their level of independence may take longer than with people not on the Spectrum, or may not ever develop to the required level for independent decision-making without all-encompassing decision-making assistance. It is essential to have experienced Special Needs legal counsel to help create a solid framework for a positive and rewarding adult life, that functions smoothly in the legal framework within which we all live and work. Pertinent issues are many and varied, some intricate in detail, such as Special Needs Trusts, Estates, Wills, and a competent Special Needs Attorney is definitely someone you would want to add to your family’s professional Team!

  1. Support Coordination- Do what research and networking that you can to educate yourself on obtaining a Support Coordinator (“SC”) who is a good fit for you and your family.
  2. Essential Lifestyle Plan- Fill out the “ELP” with your SC.
  3. Fill out the Individualized Service Plan- or “ISP”, with your SC Seek out and engage a Special Needs Attorney, or “SNA”, and prepare to undertake certain initiatives to ensure the sustainability of caring for your loved one on the Autism Spectrum throughout his/her lifetime.
  4. Seek out and engage a Special Needs Attorney, or “SNA”, and prepare to undertake certain initiatives to ensure the sustainability of caring for your loved one on the Autism Spectrum throughout his/her lifetime

2. Personal Finance- If your loved one has a bank account with over $2000, it is recommended that you work with your SNA to set up a separate OBRA third-party Trust, with your loved one as beneficiary, and place all funds above $2K into it, at age 18 or even earlier is better.

3. Social Security Income/ Registration with Medicaid- In addition to applying for legal guardianship and completing that process if needed, at age 18 one can apply at the Social Security office to obtain SSI - which automatically gets registers one into the Medicaid system. This is very important for obtaining services in later years. In addition, it is a good time to review and consolidate one’s paperwork for applying/re-applying for DDD. The paperwork can be submitted to the DDD at that time but won't be fully worked into the system until the client turns 21. The parents can and should become familiar with who the DDD Transition/Intake representative.

4. Medical Insurance- Once SSI is secured, the client can get their own insurance through Medicaid and can choose from several providers. You must choose the provider carefully so that you get the doctors/expertise that you need. At that time, you may want to start the process to change over from pediatric docs to adult docs if the family so chooses.

Age 19

General Guidance and Recommended Actions

1. Employment- Apply to Division of Vocational Rehabilitation Services (see Myths and Facts about the DVRS- click here)

2. Tour different Day Programs- As of this writing, there is a shortage of Day Programs compared with the number of new Autism Spectrum graduates in Northern New Jersey. More challenging yet, while some programs are new and growing, some have “max’d out”. The best you can do is tour as many as you can, and sign up for interviews; it is possible to “get lucky”!

Age 20

General Guidance and Recommended Actions

-under construction-

Age 21

General Guidance and Recommended Actions

1. Your loved one begins his/her Day Habilitation or Employment Training Program!

Age 22

General Guidance and Recommended Actions

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