5 Big Mistakes Made By Caregivers of Children with Special Needs

By Michael J. Searcy

Parents of children with special needs face a whirlwind of emotions dealing with the health of their child, physical demands of caregiving, financial concerns and future planning. While there isn’t any one place you can turn for all of the answers, we spoke with several of our clients who are caregivers about their situations. Based on their responses and our experience in the area of special needs, we developed a list of 5 big mistakes caregivers make and pointers to help avoid these mistakes.

1. Taking On 100% of the Financial Responsibility

Many families that have the means to cover the expenses of their child tend to take the financial burden upon themselves. While it may seem like the right thing or the easy thing to do in the moment, this decision could negatively impact your future financial security. Parents must consider the future of their entire family and protect their financial security by utilizing resources available to help children with special needs.

One piece of advice we often hear parents share is to remember you are a citizen of your state just like everyone else and you have paid into state and national programs so they will be available when people need them. Now that you need them, there is no need to feel guilty for utilizing the resources you have helped put in place.

2. Not applying early for Medicaid and Home & Community Based Services (HCBS)

Children with special needs often face even more challenges as they get older, and parents who don’t think about the future start to panic as their children age and require more resources than they had expected. Do not wait until your child gets older to start applying for Medicaid, HCBS and other programs that can make a meaningful impact on their future. You never know when the laws for applying for benefits and aid will change, if there will be enough resources in your state to accept new applicants when you really need them, or if limits will be placed on these programs. By applying early and finding a place for your child in these programs, you not only have the security of knowing help is there at the moment, but you may find additional benefits you weren’t even expecting. For instance, many programs will assign you a case worker that can be a wealth of knowledge beyond their specific program and can help get you plugged into resources of which you may not have been familiar.

3. Focusing Only on One Pillar of Knowledge

We work with several medical professionals that are caregivers to children with special needs. They have shared that it’s very easy to fall back on focusing on the medical aspect of their child’s situation because that’s what they know and are comfortable with. This allows them to immerse themselves in one pillar of knowledge and ignore the others. You have to consider all the aspects of your situation so that you aren’t ignoring an aspect that could impact the future health, safety or financial needs of your family. If you have vast knowledge in one area, consider joining programs that educate you on other areas. You can also develop a team around you to help with areas that you aren’t as familiar with, such as the legal aspects of trusts and guardianship or the monetary aspects of funding care and financial planning.

4. Not Asking Enough Questions

Asking questions and putting out feelers is extremely helpful to caregivers of children with special needs. There is a wealth of information to be found, but taking action is required. Asking questions also gives you the confidence to say NO when you come across something you find you don’t like or don’t want to be part of. If you don’t understand what’s going on at the health level, school level, family level or program level, you could be led in a direction, though not necessarily bad, that isn’t the best for you and your child.

5. Not Accepting Help

As a parent, it is easy to believe that no one will take better care of your child than you can. By expecting things to happen exactly as you want or expecting others to do things exactly as you would do them, you cause yourself undue stress. People offering help and programs that send caregivers are doing so to take some of the stress and burden off of you. By learning to manage your expectations and let people share in your caregiving, you can focus on your health and other aspects of your life that can actually make you a better caregiver in the long run.

Originally published in the Kansas City Star: http://www.kansascity.com/news/business/personal-finance/article41686506.html

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Published for the blog on November 15, 2015 by Searcy Financial Services, your Overland Park, Kansas Fee-Only Financial Planner and Investment Manager.