Need Help Establishing Boundries with Family Working for Special Needs Child

Updated on October 07, 2008
K.B. asks from Minneapolis, MN
7 answers

I am having trouble establishing boundaries with my mother and other family members that provide personal care needs for my daughter.

They are supposed to follow a support plan designed by myself and the agency based on her needs but they often come in and think they should get paid to basically be a no more than a Grandma. Then when I push the issue, they make me feel guilty and lucky that she gets any services at all and that I should be grateful that I don't have strangers coming in her potentially abusing her. In addition, my mother brings up parenting issues (mostly her telling me that I am an unreasonable boss when I ask her to follow through with the support plan) when she is on the clock after I have specifically asked her to please wait to speak with me about those thing until her shift is over.

I feel VERY vulnerable and have a history of people walking all over me so to compensate for that I have become what some are feeling as unreasonable and shrewd- when I feel I am advocating for my daughter.

I rely 100% on them so I can work and go to school but it has been going on for a long time now and when they don't show up, I have to drop out.

How can I tell if I am being unreasonable or not? I feel that I need to run a tight shift because there are medical needs involved. I know that I have not asked anyone to do anything outside of their legal job description but when I ask them to do anything beyond babysit- they threaten to quit and get a better paying job.

I feel that my mother is constantly rubbing in my face how little the money is for the type of work and she is basically doing me a favor.

I have tried hiring other employees for a short while- but it takes several weeks to go through the hiring process- in which case I will have to drop out again and they didn't work out either because they basically refused to do anything outside of babysit for the money. I just have a hard time justifying paying a babysitter $12.50/hr when the job description (per state regulations) includes light household work/personal cares provided for my daughter (laundering etc..)

I am working REALLY hard to finish my degree so I can get a good job and out of the poverty level but at this point I feel like taking out a grant (which is barely enough to survive)available for parents of special needs children and staying home with her full-time but I just don't know what to do anymore.

What can I do next?

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K.S.

answers from Minneapolis on

Hiring family is very tricky and unless you and the other family members are able to treat this as a professional job (and keep personal issues out of it) then it is not worth it. I know hiring help can be difficult but there are people out there. I am surprised that you are having so much trouble hiring someone who thinks $12.50/hour as reasonable for this job description (it seems reasonable to me). Take a hard look back at how you were treating those people when they worked for you. If you are being harsh instead of positive then noone is going to stick around.

But here is another thought. I have no idea what level of special needs your daughter is, but she is at school age and should qualify for some day programs through the school system. Trnsportation and an aide are generally provided. Have you checked into whether this works?

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J.B.

answers from Minneapolis on

Dear K.,

Well, I guess reading your entry and the other one posted I have a much different thing to say. I guess I kinda want to see if I have the details straight. It sounds as though you are currently working with an agency to have someone come into your home and care for you child while you are in school. It sounds like you have a support plan in place that was come to by a team of people looking out for the best interest of your children. It sounds like your family has somehow become the ones that you have entrusted to follow the support plan that was set up for your child. Going under the assumption that this is the case, here is just my opinion.

I do not think you are being unreasonable. Let me just put this into a job perspective. I have 2 jobs. My first is doing primary care for a 2 year old. I get paid 600 a month which averages out to about 3.75 an hour. Yes, this is in my home, but well, that is way below the 12.50. And she has to only share my attention with my 3 year old and i love her as though she was my own.
My second job is as an in home caregiver. My job is to go into the homes of individuals who need our care who cannot be on their own in their homes or just need to have someone come in to bring them to their appointments, cook for them, do their laundry, light housekeeping, whatever they need. Did I mention that I get paid 10.75 an hour. But, knowing that I am helping someone be able to stay in their home makes it so worth it. That appreciation makes up any price difference of what I would have been making at the previous job I was at.
So, yes your family could go out and get another job that could possibly pay them more. I think that with that they would find other things that would cost them that might off set that extra $2 an hour they are making. Plus they wouldn't be able to be in your home, caring for their grandchild and making sure that she is getting all she needs.
My opinion is you do need to sit down with the grandma. Try to set aside the emotions. Just pull out the support plan that was set up by not just you, but for the agency as to what needs to be done as part of the job requirements. You need to say that you are doing your best to provide for yourself and your daughter, to get yourself ahead to provide for your family. The stress of this not being worked out is making it too hard for you to do that. You need to say that if she wants to go work elsewhere, maybe she should. You don't want to feel as though you are taking an opportunity away from her. You want her to do what is best for her and you will have to find someone who is able to come in and follow the plan.

Yeah, i know it is hard to find the right person to come and care for our little ones. I am looking at going back to work and find myself in a similar situation. But, there are options for you. You may be able to find the perfect match for where you are and what you need without the added pressure and stress of feeling like grandma thinks she is being taken advantage of.

If you need any help finding someone if grandma doesn't seem to agree once you have sat her down, I am more then willing to help in any way that I can.

There are jobs that pay more money, but sometimes knowing that you are helping another family out and being able to make a difference in a single mother's life and her child's is well worth the 12.75.

Good luck and hang in there.

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L.M.

answers from Minneapolis on

I think you need to just look at the way you approach your family members. Think about how you would feel in their shoes. Talk to them the way you would want to be talked to. Of course your daughter deserves the best, and more than anyone, your mom should want to give her granddaughter the best. But if she doesn't feel appreciated, then I do not blame her for letting you know that. I think as a society we could all benefit from being better listeners, and treating everyone around us the way we would want to be treated. Also, if you have things you need to say that are critical, always layer the critisism with two heavy doses of praise. For example, if you need your mom to do a better job washing the clothes, then say to her "I really appreciate the time you have spendt with my daughter today! I can tell how much she loves being with her grandma. I'm a little picky about the way I need my clothes done. Can I show you what would work better for me? I am so grateful to have you here, mom. I couldn't do it without you" Do you see how you would flatter her, then use "I" statements so as not to offend her, and then come back with a heartfelt comment to show her how important she is? Look back on the way you've talked to her over the last couple months and really try to see honestly, how you would feel if you were in her shoes. Stick with your studies anyway you can. You are such an important role model to your daughter. If she sees the struggles you have to overcome and the grace by which you do things, she will not let her disabilities stand in the way of her dreams either. Bless you!

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P.L.

answers from Alexandria on

I am so sorry to hear that you are having this struggle with assistance for your daughter. My question is this: Did you go through an agency to hire your family to care for her?

My son also has special needs and has a PCA to work with him. The PCAs that we employ go through extensive training through the agency we use before they ever set foot into our home. We interview prospective PCAs and WE make the decision of whether or not to hire them to work with our child.

If you went through an agency, I would contact the case worker in charge of your daughter's case and ask for her assistance in training your family members to work with your child. Although it is difficult, if you are going to employ family members, they must understand that when they are at work, they are no longer grandma, aunt, cousin, etc. This doesn't mean that they can't still be called by those names, but that they must treat it as though they were going to work at a business or somewhere else. Just because you are family does not give them permission to slack on their job description. If they were working at Wal-Mart and did not follow their job description, they would receive a reprimand. After three, they would be out of a job.

I agree with the other respondent who suggested that you look into school programs for your 5-year-old. Schools are required by law to provide services for special needs students, and there are many wonderful programs available. This would cut down on how much time you actually need assistance in your home.

Good luck, and I hope it all works out.

P.

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A.W.

answers from Minneapolis on

I'm sorry to hear about all the problems that you are having. I'm a single mother to 3 kids and I'm also going to school. I go to an online college so I don't need anyone to watch my kids for that. Have you thought about doing that? I'm actually looking to go back to work if your family taking care of your daughter doesn't work out then maybe we could work something out. I love kids and I think what you are paying is a fair price. Just a thought you can email me if you are interested or if you just need to vent. I know how helpful that can be! Good luck!

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K.J.

answers from Minneapolis on

There are several other problems that I see here. Does your daughter have a county case manager? How about the agency you are working through - who is in charge of her case? They are being paid to help you provide the proper care for your daughter and to advocate for her. Ask them for their assistance.

Also, your family is taking advantage of you. They are not being paid to babysit. They are being hired as an employee of the agency to provide care for your daughter. They are obligated to provide the care specified in the care plan or they should be fired - your daughter deserves this. Many people do not understand how much extra work, stress, time, etc. is involved in caring for a child with disibilities. They don't understand that light housework is needed for your daughter - not you. There are often extra clothes, cleaning, etc. necessary because of her needs. Also, since you obviously are alone, you cannot do everything and still provide the level of care she needs.

If you can't get the agency or other case manager to assist you, you should contact someone else to assist you in advocating for your daughter. Arc is a good resource. They are in the phone book or you can find them online at www.arcgreatertwincities.org.

Good luck.

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K.W.

answers from Minneapolis on

Hi there, First off let me say that you have every right to be upset about your daughters caretakers not following thru with the support plan. I have worked in the field for about three years, mainly with older adults some with develpomental disabilities as well as physical disabitities and TBI. Support plans are created for that exact reason, to be able to SUPPORT the individual with goals and independent living skills. At my job if we don't follow thru with the support plan and do daily documentation, we get canned. I don't know much about your child's needs but no matter who the caretaker is that should be their first priority. It's hard when it's family...I can see how that would be difficult. I would just really try and sit down with your mother and let her know that your daughter needs more, and that she needs to follow the care plan developed by the MD. I will be honest and say that I have worked in high-medical houses and performed many cares at times and I don't get paid anymore than $10.95/hr. I know it's time consuming to do hiring, but there are good people (other than family..not saying family isn't good:).. that look beyond the pay scale to how they can help enrich a child's life. I wish you the best of luck!!!

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