Planning for adulthood and beyond.
There are no federal or state laws guaranteeing entitlement to services after the age of 22. Access to residential, vocational, and transportation services becomes a major challenge for many families.
This is the time when all your prior efforts in advocacy and planning will come together. Being creative with personal and public financial resources, as well as having a clear vision for your child, can make a tremendous difference in their life.
It is important to discuss money for as we all know it takes money to provide for staff, housing expenses, employment supports, transportation, education, health care services to name a few. It is also a reality that the government does not have funding to provide for all of these services.
Unique planning requirements
- At this point, since your child is now leaving the public school system and services, you should have already gone through the transition planning. They should already have established a day program as well as residential eligibility.
- If you have not yet identified local support agencies that specialize in providing information and services for your child’s specific needs, please do so as soon as possible. Keep in mind that options do exist out there!
- Do not assume that the Government will fully provide for your child’s lifetime needs. Maintain a balance in your overall planning to include the needs for other children as well as your own needs – both personal and financial.
- Review life insurance needs and products.
- Build your Team to Carry On.
Steps to help secure government resources for your child:
- Locate possible programs or funding. Depending on the age of your child, your IEP coordinator, doctor, school system, and other parents are good resources.
- Determine the most suitable agency that meets your needs. Identify the agency that has a mission related to the disability of your child. In addition, it is important for you to find out which state agencies have the greatest funding. In some cases, your child may have a dual diagnosis and may qualify for services through more than one state agency. If this is the case, refer to your state’s budget to determine which agency has the largest resources allocated. You may want to request assistance from an aide in your state legislator’s office to help guide you in the right direction.
- Begin the application process. As soon as you identify an agency that is relevant and which has services you require, ask for an application. If you are uncertain how to complete the application, request assistance from the agency.
- Get organized from the beginning. Track submission dates and due dates, and then follow up on these dates.
- Proactively address any barriers to ensure timely completion of your application. If you see gaps in your information, address them through setting up appointments for evaluations or by requesting information that is missing from your files.
- Monitor the application process. Follow up with the agency once or twice to see whether there is anything you can do to facilitate the application process. Contact them if a deadline has passed.
- Watch timelines because prompt sharing of records is important to keep in mind. When you are attempting to get an application approved, the date of your application triggers all the deadlines for various steps in the process. If you delay applying, the school, local Social Security office, or state agency is no longer under the same time obligations that are triggered by your application date.
- Follow up if a case manager misses their deadlines. But make sure you get your necessary paperwork together, so you do not miss deadlines, as well. You can rely on a certain level of responsiveness because most programs have guidelines and regulations that must be followed.
- Be prepared to advocate for specific supports or services that fit the personal vision of your family member and/or family.
We felt so much pressure to find housing for Jonas by the time he turned age 22 that we did not stop to think that he had housing—it was in our home. He loved living with us, and we all loved having him as part of the family. There was really no rush to settle for something less desirable than we had imagined with so few options available. We wanted to take the time to find a good home and roommates for Jonas. When we accepted that 22 was not doomsday for housing, we were able to breathe a sigh of relief. We could then focus on where he would work and how to access the transportation to get him to and from work so we could continue with our own jobs.
We started with a day program nearby that his school counselors introduced us to. We then secured public transportation from our para-transit service for pickup and drop-off each day. From there, we worked with job coaches to try different jobs until they finally found a great job for him in food services at the local hospital. He loves his job, and with the support of his job coaches, they help him to succeed. We will continue to look for housing options for Jonas, but now we think we can use the time to plan better and are looking toward his age 30 for him to move out of our family home, which seems a much more realistic timeframe for our family.
Check out the Knowledge Bank- with our compliments!We are committed to sharing free educational resources with all members of the disability community. Our Knowledge Bank has a catalog of information, along with downloadable checklists and tools, to help you begin your planning journey. We also publish the Special Needs Planning Blog to keep our followers up to date with information and events. And you may sign up to access all of the resources in our Knowledge Bank for FREE!
- The Special Needs Planning Guide, How to Prepare for Every Stage of Your Child's Life, Haddad/Nadworny, 2021, Brookes Publishing.
Affinia Financial Group conducts business under the Special Needs Financial Planning name. Advisory services offered through Affinia Financial Group, LLC, a registered investment advisor.
Content in this material is for general information only and not intended to provide specific advice or recommendations for any individual, nor intended to be a substitute for specific individualized tax or legal advice. We suggest that you discuss your specific situation with a qualified tax or legal advisor. There is no assurance that the techniques and strategies discussed are suitable for all individuals or will yield positive outcomes.
The experiences described here may not be representative of any future experience of our clients, nor considered a recommendation of the advisor's services or abilities or indicate a favorable client experience. Individual results will vary.