My Child has been Diagnosed with Special Needs: What Happens Now?

 February 21, 2013
Posted by M&LAdmin4

Thursday, February 21st, 2013

A few weeks ago, M&L Special Needs Planning published a blog titled Transitioning: A Summary. In this blog, we discussed the various steps that a child with special needs will take as he or she begins the process of preparing for life after high school. This week, we decided to switch gears and focus instead on the beginning; some of us are just taking the first steps of the incredible journey that is raising a child with special needs. We have compiled a short list of ways in which you can help to ensure that your child with special needs has a happy, healthy and financially secure future.

Step 1: Diagnosis

The term special needs is a blanket term which covers a variety of diagnoses. Upon first learning that their child has been diagnosed with special needs, parents will often experience the various stages of grief; experts suggest that feelings of anger, loss, denial, and guilt are all common emotions that you may struggle with during this time. It is important to give yourself, your spouse and your children time to work through these emotions, and to be patient as you all go through this process. It may be beneficial for you to learn as much as possible about your child’s diagnosis, and to reach out to experts and medical professionals for information. Connecting with other parents and members of the special needs community is also an excellent way to gather information and gain support for yourself and your family. Please visit the Special Needs Kids Information, LLC’s website for a list of support groups in the Virginia, Maryland and Washington, DC area.

Step 2: Early Intervention

Many experts suggest that early intervention is the key to helping children with special needs achieve their fullest potential. Early intervention programs are designed to identify the developmental stages that your child has reached, and provide various programs, i.e. therapies and other types of interventions, that your child needs to meet developmental milestones. Under the Individuals with Disabilities Education Act (IDEA), the federal government funds a program which “provides grants under a statutory formula to 50 states, the District of Columbia, the Commonwealth of Puerto Rico, the secretary of the interior, and four outlying areas to assist in maintaining and implementing statewide systems of coordinated, comprehensive, multidisciplinary, interagency programs of early intervention services for infants and toddlers with disabilities and their families.[i]” To learn more about early intervention, please visit This website also has an excellent resource to help you find early intervention services in your state.

Step 3: Examine and Plan for Legal, Estate and Insurance

There are many ways in which families with special needs can arrange their legal affairs to ensure the maximum protection of their child with special needs, as well as other family members. These steps can include writing a will and naming a guardian in case of premature death or disability, or creating a Special Needs Trust to secure the financial future of your child with special needs. It is also important to check and  ensure that the beneficiaries on all life insurance, retirement plans and annuities are correct and up to date. You may wish to consult with an attorney who is familiar with special needs legal planning to create the Special Needs Trust and to ensure that you have taken all necessary legal steps. It may also be beneficial to revisit your insurance policies to ensure that you have maximum protection and coverage, and have purchased enough insurance to adequately cover all the needs of your family, keeping in mind the lifetime supplemental needs of your child with special needs.

Step 4: Government Benefits

Be mindful of what the government benefits are and how to keep your child with special needs eligible. Bottom line – keep all assets/resources out of the child’s name. A non medical criteria to be eligible for supplemental Security Income (SSI) at the age of 18 is the individual with special needs must keep assets/resources below $2000. With SSI comes Medicaid, and the Medicaid Waiver which will hopefully pay for most of the adults services at the age of 21/22 and beyond. Continue to advocate for your child and make sure you are aware of the local and state agencies. The child may be eligible for SSI under the age of  18 if the families assets and resources are $3000 or less. Always stay educated and pursue your child’s rights and entitlements at all times. If the parent dies, retires or becomes disabled, the child is entitled to Social Security Benefits at basically any age.

Step 5: Create a Financial Plan

It is never too early to create a financial plan for the future of a child with special needs. Here at M&L Special Needs Planning, we stress that special needs planning is done for two generations – in other words, it is important to plan for typical family goals, for example college tuition and retirement savings, as well as planning for the milestones in the life of a child with special needs (for example, when early intervention services end, or when your child enters the transitioning phase of his or her life).  At M&L Special Needs Planning, we urge our clients to complete the Comprehensive Special Needs Financial Life Plan, which allows families to clarify financial goals, identify and maximize personal resources, and learn how to access the government benefits that may be available for your child with special needs. Whichever route you decide to take, it is vitally important to consult with a financial planner who specializes in and understands the unique challenges that face families with special needs. If you would like more information in regards to financial planning for families with special needs, we are hosting a workshop titled Navigating the Financial World of the Family with Special Needs on February 26th, at the TLC – Treatment and Learning Center in Rockville, MD. To register for this free workshop, click here.

Please bear in mind that these steps are intended simply to guide you through the process of creating a happy, healthy and financially secure future for you, your family, and your child with special needs. Each family is different, and each family faces their own set of unique challenges. As such, the steps you take in your journey might not be the same as those outlined above. The most important thing to remember is that planning is essential – life happens, situations arise, goals change. Having a thorough plan can help you ensure that your family’s future is secure, and will help you effectively weather any challenges that may arise in the future.

For further reading on this topic, this article found on the Selective Mutism Group’s website is a great resource – it is a comprehensive look at the first eight years of the life of a child with special needs. If you have any questions, or would like to begin the process of planning for the life of your child with special needs, please don’t hesitate to contact us. Also, please browse our Workshop Series. We offer each of these free workshops a number of times throughout the year, in a variety of locations. If you would like us to host one of these workshops at your venue, give us a call! We are always looking for new places to present, and we are willing to travel.

Thank you so much for taking the time to visit our blog today. From all of us here at M&L Special Needs Planning, have a great day!


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