Planning for the Future of Your Child with Special Needs

By Michele Margenau

The following article was written based on resources in the state of Connecticut.  It is meant as a guide to assist parents with what areas they should address when planning for their child’s future.  Other states and countries may have similar resources and agencies, but the names may vary.

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The Department of Rehabilitation Services, Bureau of Education and Services for the Blind (BESB) in Connecticut recently held a workshop for parents of our clients.  The topic was Planning for the Future: Setting up Lifelong Supports for Your Child.  As any parent knows, thinking about and planning for your child’s future can feel overwhelming; the stress increases when the family includes a child with any type of special needs.  There are so many areas to consider such as what  the possibilities of employment are in the future, what forms of government assistance are available, how a parent can prepare financially for their child’s future, along with legal issues such as trusts and guardianship.  As a parent, there are a variety of agencies and experts that you should consider getting in contact with depending on the age of your child.  This article is meant to give parents an idea of some of the resources available to address disability services and supports, vocational rehabilitation, legal and financial advice. It is only meant to be an overview and not a comprehensive answer for all individuals.  Some agencies will vary in name depending on the state that you live in.

Department of Developmental Services

The state of Connecticut has the Department of Developmental Services (DDS).  This agency provides assistance to individuals with intellectual disabilities and their families. Services that may be available include case management, respite care, family support, employment, and day services.  Once a client is found to be eligible for DDS services, they can also offer support with the Social Security and Medicaid application process along with the Guardianship process.  A family should apply for services as early as possible, but definitely by the age of 18. In order to gain services from DDS, an individual will need to have testing to show that there is an intellectual disability.  Testing can be completed at a clinic, hospital, or school (if under the age of 21).  Information about Connecticut’s Department of Developmental Services can be found at their website www.ct.gov/dds.  There is also a helpline for families in CT that assist with the process.

Vocational Rehabilitation

An individual in Connecticut that has a visual impairment or is legally blind may qualify for services from BESB’s Vocational Rehabilitation (VR) Program. Students may be referred to VR at the age of 16 during the Planning and Placement Team meeting (PPT) and it should be stated in the Individualized Education Plan (IEP) that there is a referral. VR will assist with the individual’s planning for post-secondary education or with those looking to enter into employment. Some examples of support that the post-secondary education student can obtain are: assistance with identifying a career goal that has employment opportunities, post-secondary programs that offer degrees or certifications to prepare for employment in the chosen field, understanding and navigating the financial aid process, and finding internships. Individuals seeking employment can obtain career counseling, job coaching, and skills training. The goal of employment through VR is for the individual to gain employment that is competitive, integrated, and independent with competitive wages.  For more information regarding CT Vocational Rehabilitation Services through BESB, contact the Vocational Rehabilitation Supervisor at 860-602-4032 or visit the state website http://www.ct.gov/dors.

Legal Planning

Other important advice for a family to seek out when planning for their child’s future include legal advice and financial planning.  Families can google attorneys and financial planners specializing in working with families that have members with disabilities.  It is suggested that a family do some internet research, but also gain referrals from other families that have gone through or are in the process of setting up supports.  It is important to find a specialist that you trust, as the laws are often changing. 

Once your child arrives at the ages of 18 and 21, there are many legal issues that will change, as they are considered an adult. There are so many issues to consider even for the age of 18.  At the age of 18 they are legally able to make health and financial decisions.  If you feel this is not something they can competently do on their own, there needs to be documentation in place that protects them and the parent’s ability to assist in these situations.  Where is your child going to live in the future? What long term benefits and trusts will they be able to access?  Who is going to become their guardian once their parents have passed away?  An attorney that specializes in planning for persons with special needs is knowledgeable in areas such as estate planning, different types of trusts, ABLE accounts, conservatorship, guardianship, financial gifts from relatives,  SSI and SSDI.  All of these topics can feel very overwhelming and may make you feel like you would rather just ignore it til later.  I encourage you to seek out professional assistance ahead of time.  They will help walk you through all the important parts of the process.

The BESB presentation in Connecticut included two speakers representing the legal issues to be addressed. You can find others within CT or your state with a little internet research and networking with other families.   One possible contact in Connecticut is:  Jaconetta, Burnham & Wimer LLC

Financial Planning

One other area in which you should seek advice is financial planning. This may even be one of the first areas in which to seek advice, as time and money go so quickly.  You want to be able to plan for your own future and possible retirement, while also considering the financial needs of your child.  There are many areas to look at, such as where the family is financially now, where you want to be, and what obstacles you might encounter to achieve your financial goals.  A financial advisor can give advice about having emergency cash, as well as saving in Roth and Traditional IRAs.  During different times in your life, you may want to put money in certain accounts or move money to another form of savings.  Some accounts are pre-tax, while others are post-tax, and some have caps on how much you can contribute.  This is once again an area that can feel very overwhelming, but working with the right people will make it much easier to understand.  The speaker at BESB representing the financial field was:

Mentioned above are just a few areas a family may require assistance.  There are many other types of assistance families may feel they need, such as help with respite care, mental health, food and utilities, and special education, just to list a few. Two great starting points should include your state website and InfoLine 211. There you can often find assistance for special education, mental health services and many other topics.  InfoLine is a nationwide number and website, which can connect you to local services to assist with respite care, mental health, abuse, advocacy, and many other areas of need.  They can be contacted 24 hours a day, 7 days a week and are multi-lingual.  

Much like having a team in your school system to make sure your child is receiving the education they need, you need to set up your own team to protect your child’s future.  The advice from the BESB workshop would be: do your research, plan in advance, don’t put it off til you have lost out on important resources.  It is never too early to start gaining the knowledge you will need to find your way through this process.

Professional groups mentioned in this article are purely informational and not meant to be an endorsement.