Getting Support When You Have a Child with Special Needs


Being a special needs parent can be both heartbreaking and rewarding. You have to learn to accept and treasure your child. All too often, we view kids with special needs and disabilities by what they can't do, rather than celebrating all that they're capable of and capable of becoming. With time, you'll realize that you're the lucky one. Take everything you thought you knew about parenting and throw it out the window. New strategies are needed. Life is different than what you imagined, but it's going to be okay. Determination and love will do most of the work. 

It's crucial to understand that you don't have to get through the rough patches alone. There are support groups and other parents of special needs children. If your child requires more support then expected, you can get paid to take care of them. More exactly, parents of kids with special needs who receive Medicaid benefits get access to New York State's CDPAP program. Not only can the magic of childhood be preserved, but also be amplified. As your child's primary caregiver, you'll have to handle a great many responsibilities. But if you're up for the challenge, that's perfect. 

Nobody Understands Your Family Like You Do, Especially When It Comes to Providing Essential Care  

CDPAP is an acronym, and it stands for Consumer Directed Personal Assistance Program. It's a Medicaid program that extends throughout the U.S. It offers an alternative to receiving home health care services. Consumers can require assistance with activities of daily living or skilled care. As of April the 1st, 2016, it allows parents to act as personal care assistants. Therefore, a loving person can ensure a consumer's best interests. What does this all mean for families? Parents who are willing to do this for their children receive financial support to not become bankrupt.  

Many family members can become assistants, including siblings, grandparents, and cousins. Parents can become personal care assistants only if the child is older than 21 and they're not the legal guardians. Children who have reached 21 are no longer in a school setting, requiring attention. Caregiving means the inability to work a job, so you need all the help you can get. The amount of aid you receive from the government depends on the disability, so see what kind of support is available. If your child is younger than that age, designate someone from the family as a CDPAP caregiver. Alternatively, you can hire a personal assistant. 

What Are Some Useful Tips for Taking Care of Your Loved One? 

To help you manage the bumpy parts of the ride, we've come up with some suggestions. There's no right way to perform this (very) important job, but there are some unique challenges you might face when caring for an adult or child with special needs. As a caregiver, you should focus on the following: 

Embrace Your New Identity 

In addition to being a caregiver, you're a parent, healthcare advocate, driver, master scheduler, and the list can continue. It will take some time until you adjust to the new job. The more prepared you are, the faster you'll adjust. Caregiving is hard. Even if you plan as much as possible and have conversations beforehand, there are always unforeseen circumstances that can force you to make difficult decisions. For instance, you may have to impose restrictions, such as forbidding driving. Take part in caregiver training conducted by a nurse or therapist. This will equip you with the practical skills you need to care for your child.  

Work With a Medical Professional to Develop a Care Plan

You'll most likely see a variety of doctors, specialists, and therapists. It's strongly recommended to work with a medical professional to develop a care plan. The physician will determine if the child has a disease that requires special attention, such as tuberculosis. Being able to access healthcare services can address their specific needs, better manage healthcare conditions, and decrease the development of preventable diseases. Medicine is rapidly evolving, so make sure your child benefits. Do your homework and make sure they get the attention they deserve. 

Celebrate Successes 

You and your kid deserve to celebrate. Take pride in the little wins. The journey towards achievement is sometimes more important than the end goal. Pause and savor the sweet moments, like when your child is able to transition to an activity without a meltdown. A simple way to track accomplishments is to write them down in a journal. Celebrating successes, both big and small, is an effective way of reducing stress. When you feel discouraged or defeated, review your wins. Keeping a journal takes very little of your time. 

A Personal Care Assistant Can Offer Much-Needed Help to Families with Special Needs Children 

The most important thing to understand is that you're not alone. If you feel hopeless or you're struggling to keep going, consider the possibility of hiring a personal care assistant. Caring for a child with special needs is a big responsibility, and it's more than a full-time job. A personal care assistant can help with day-to-day tasks, whether eating or bathing. To put it simply, they're a lifesaver. In the state of New York, Medicaid recipients can request personal care services through their managed care health plan. It's the organization's responsibility to carry out the evaluation and recommend a certain number of hours. 

If you're looking for someone with a lot of work experience, reach out to a nursing agency. If this aspect isn't important to you, place an ad online and in local newspapers.  Maybe you're not ready to become your child's caregiver. That's alright. There's a big learning curve in gaining experience and new skills, not to mention that tough decisions have to be made. The reality of caregiving is unpredictable. What if dad isn't there to help? Even if you're able to handle daily responsibilities, you still need a backup plan. When you play the role of the family caregiver, you can't also be the one to administer plan B. 

Make no mistake: there's nothing easy about becoming your child's caregiver.


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