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Disabled Children
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I am an ALS caregiver spouse in Tennessee. It would be life changing to be paid so I could focus all my efforts on my husband and not have to worry about working and paying our bills! Let’s make this happen!!
Julie supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesI’m a mom of a 6 year old Down Syndrome child who has been denied child care in our city because he is a disable kid. I believe he should have the right to be well taken care of just like his sister and new born brother. I have been taking care of him since he was born and life has been hard because a lot of our doors get close due to the fact that one of the parents have to stay home to watch the special needs child because there is no support out there for us. We deserve the same right and freedom to thrive as anybody else in our country.
Rubi supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesI have a special need child and I will fight for this community!
Roxie supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesI am a single mom with a child that has a rare chromosomal deletion that results in many medical needs, legal blindness, hearing loss, low tone, an immune disorder (bach2haplion sufficiency), a connective tissue disorder, a brain abnormality, growth and thyroid issues, feeding issues and more. I can only work part time in order to meet the needs of his care. I am now in subsidized housing in order to make this work. I have a masters degree and would have a career as I once did, but due to the extent of his care I am completely financially devastated and bound to his appointments, infusions, therapies, illnesses, and medical care. Some states pay parents to care for their child but mine does not. I can’t say enough how much this is needed.
Katie supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesIm a parent with a daughter who’s 14 and fully dependent on me. For feeds , for toileting, and even communicating her needs cause she’s none verbal and many other things. I’ve trained all my help over the years. My daughter walks very little and has been fighting to live for 14 years honestly . Since she started this program I have found her care providers ( agencies can’t get them) and than sent them to agency to get a job through them but my daughter still hasn’t gotten all the hours she needs. I’ve never used all the hours my daughter gets till I took over half the hours. It’s so bad the agencies can’t find help that they take my help for others yet my daughter’s hours aren’t getting used. I need more help to be able to buy things I need for that my other kids have never needed at this age.
Amy supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesMy son has been out of work since April 2024 as no one will work with him on the hours that he is available as my son cannot get daycare because he is not working therefore he can't find work . His son is Autistic and doesn't allow anyone near him if he doesn't know them. He elopes therefore if my son gets paid as his caregiver then my son is bring in a income plus taking care of his son.
When his son is sick and unable to attend school or therapy my son is there full time.
My grandson is level 2 ASD with ADHD/ impulsiveness and possible PDA ( still waiting on diagnosis).
My grandson will not go to bed or settle down unless dad is with him. He has alot of meltdowns if my son is not around.
As it is there is a shortage of caregivers and alot of caregivers are not qualified with caring for a autistic child.
Please keep paying the parents as caregivers.
Marjorie supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesI live in KY. My youngest is 3 years old and has significant cognitive delays as well as physical disabilities. Due to the number of specialist and therapy appointments weekly, I am unable to maintain regular employment. The only assistance available is the Michelle P waiver, which currently has a ten year wait list. Families of special needs individuals in the state are drowning. Something MUST be done.
Erin supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesThe parents who are stay at home because of their child’s needs choose that because they’ve been with them since day 1. They are the ONLY comforting factor in their kids lives. I have several friends who need this to stay in place. Do not get rid of this small portion they receive. It helps in the biggest ways.
Jacqy supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesNo one fully understands the time and care that goes into being a parent for a special needs child unless you’re experiencing it yourself. My 4 year old non verbal autistic daughter needs 24 hour care, very high energy, sensory seeking and is very destructive. She also has epilepsy and experiences 50 plus drop seizures daily. We have lost thousands dollars worth of home items and just all the extra expenses to care for her. Being a paid parent care giver has been a huge help for our family with 3 children all together. No one cares for a child better than their own parent. I will do anything for my daughter and sacrifice everything. Praying this periton passes so parents can continue to have their load lightened with the already heavy stress of caring for a special needs child.
Tori supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesI have not been a participant in this program as I was advised by my case manager not to bother applying as Idaho was doing away with it; however, I can testify to the financial hardships created when caregivers are not available to provide services. My son has been approved for 40-60 hours of behavior intervention, but nobody has been available to fulfill those hours. As a result, I have quit my part-time job as a dental hygienist making $38/hour and now work full-time at his school for $15/hour since I have nobody to care for him after school. I work more, make less, and have no help in caring for him after work. The result has been tough on my other children as my time is wholly consumed with one child who requires constant, vigilant care. Please help our families out and continue to allow them to be paid care-givers to ease the burden of being unable to work outside the home due to the intense level of care their children need.
Shanna supported: Fix The Nationwide Caregiver Crisis: Pay Family Caregivers For Those With DisabilitiesYou’re not alone — a community of supporters is ready to back you.
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