Feeling desperate-quit my job?

[Anonymous]

OP - In my response above, I can see where Klonopin or other sleep meds are not the answer unless you could count on DH or a night person to care for your daughter. I do stand by not letting DH off, but setting specific tasks for him and adding over time AND holding him to account. He may need a direct wake up chat on what you can and can’t handle. Other sources of support and perhaps care funding are:

1- Have you made contact with the Developmental Disabilities agency in your state on the local level to get your daughter connected with a Case Manager?
I looked back in a description of her needs and they are definitely meeting the criteria to get her on the DevelopmentalnDisabikties Medicaid Waiver Waiting list now.

2- You should also ask the Case Manager If your daughter’s care needs would meet the eligibility level for any special waiver in your state such as a Katie Beckett Waiver I have seen, but do not know about,? Also ask if there is a Waiver like the CCC Plus Waiver in Virginia, which unlike the other Medicaid Waivers, does not usually have a waiting list. Such a waiver would enable you to bring in help to meet her needs so many hours a week, which may. be an answer to finding some weekend coverage and/or early evening care. There are also so many hours of respite care funding a year.

3- A Case Manager would also be another resource for you in your area in seeking services or understanding how and when to apply as for summer coverage in special camps now or in the future, possible local resources on respite funding, medical equipment if needed, or connection to support group.

4- If you can look for college students that could be a wonderful pathway as they may be enthusiastic and eager to get the experience and once you find a good one, you can often get personal referrals to like student. Letting them know, you would be glad to write a future reference can be important even if hourly rate on a waiver is lower than typical amount to a caregiver. Also there are ways to supplement as with card for gas, etc. At times as a “gift”. If you pay, the hourly rate us much less than an agency person would be.