CHILD CARE HELP FOR SPECIAL NEEDS CHILDREN
Finding child care for any child is never a simple task. If you add your child’s special needs into the mix your options are suddenly…..well, are there even options out there?
Those of us with medically fragile children know that with the constantly fluctuating health status and numerous doctor and therapy appointments going to work can be very challenging. Sometimes even finding a window of opportunity to leave the house to buy groceries is tricky. Whom can we leave our child with? We might be able to train a family member to stay with our child for a quick errand, but what if no family is nearby?
Our need for support
My husband and I struggled with this issue for the first few years after our son was born, but even to say “we struggled” is an understatement. The truth is that were just in survival mode during those years.
I took an extended leave from my job and eventually had to quit because our son was repeatedly being hospitalized for uncontrolled seizures. My husband worked long days, traveled for his job often, and tried to give me a break on
We knew we desperately needed help, but didn’t know where to find someone who could manage all of our son’s medical issues.
One morning the early intervention social worker arrived for our quarterly meeting to find me in my zombie-like state after yet another all-nighter. She suggested that perhaps our son could qualify for skilled nursing care in the home. When this was finally approved by the Pennsylvania Medicaid program things started to turn around for us. Over the years as we built our nursing team this became our main avenue of care for our son that we heavily relied on. We eventually also learned about a few other options that I’d like to share with you, too.
STATE OR INSURANCE FUNDED CHILD CARE HELP FOR MEDICALLY FRAGILE CHILDREN
1. Skilled nursing care for your medically complex child
Skilled nursing care refers to a nurse (RN or LPN) coming to your home to provide medical care for your child. This should not be confused with a home nursing visit such as a nurse coming to check on your child after a hospital discharge. What I am referring to is a person coming to care for your child in your home for a shift a certain number of days per week on an ongoing basis.
To qualify for Skilled home nursing care your child must have a medical intervention that requires the skills of a nurse as opposed to a lay-person. For example, a child who is on a ventilator and needs frequent suctioning and adjustment of oxygen needs the skills of a nurse, not the high schooler from down the street who babysits . Contrarily, a child in a wheelchair who needs help with dressing, feeding and bathing but no actual medical interventions would not qualify for skilled care in most instances.
How does your child qualify and obtain skilled pediatric nursing care?
Most insurance plans do not have a “Private Duty Nursing” benefit that would cover a service like this and those that do have limited coverage. The majority of children who receive skilled nursing care on an ongoing basis do so via their state’s Medicaid plan (via income eligibility or waiver). There is little or no cost to the family. States offer this in effort to keep medically fragile individuals at home rather than an institution and to save on costs. .
Each state has their own criteria for Medicaid eligibiity and benefits covered which makes things very confusing. You may also be surprised to find the degree of dissimilarlity between states. For this reason skilled nursing is not a covered benefit within every state’s Medicaid plan and every state does not qualify all medically fragile children for Medicaid (stay tuned for separate future post on Medicaid for Medically Fragile children ). Qualifying factors for skilled nursing can also vary. DO NOT assume that services your child had in one state will necessarily be replicated in another. DO YOUR RESEARCH!
While one state will only approve skilled nursing care to allow a child to attend school safely or parents to work, other states may approve a number of hours per day solely based on the child’s medical condition.
Your child’s doctor will need to write a letter of medical necessity explaining why skilled care is needed and how many hours he/she feels will benefit your child. If and when approved, it may provide the appropriate medical care for your child in your absence.
Our experience with skilled nursing
Skilled nursing helped our family by allowing me to work and get some sleep without compromising our son’s safety. As with everything, there are always limitations and we have learned that no type of care is for our son is “perfect”. Among the limitations include the widespread nursing shortage and the time it can take to find a nurse with the specific skills your child requires. But, without this care our son would likely be institutionalized eventually so you can understand how thankful we are to be in a state that provides this. In fact, we rely so heavily on nursing that we have decided to only live in states that can offer this type of support for our son(Pennsylvania and New York are two of those states). If you think your child may qualify for this I strongly urge you to pursue it!!
2. Respite Care for your medically fragile child
Respite care refers to periodic care (typically an allotment of hours per week or per month) to give primary caregivers of individuals with special needs a break, or respite.
These programs are funded through different sources depending on the state. For example, some states may fund this through Department of Disabilities while others conduct programs through other agencies.
There are different types of “respite”. One type is when someone comes to your home to care for your child, such as a babysitter. Some programs will even allow certain family members to be paid as respite providers. An outside respite program can be a camp or special needs facility where your child goes for a weekend and participates in activites while you take a break.
I have found it difficult to find to seek out respite programs and there are often waiting lists. My advice would be to contact your state office for persons with disabilities, a social worker at a special needs school, or my go-to resource, special needs parent groups on social media.
3. Home Health Aides
Home health aides are covered by some private insurance plans and some Medicaid plans. These are caregivers who can help with non-skilled care
such as feeding, toileting, or bathing.
A child may qualify for this if skilled medical care cannot be justified yet care is still required for the activities mentioned above (i.e. activities of daily living). Some states may offer certain amount of skilled care paired with some hours of non-skilled care (i.e. skilled care during parents’ work hours and non-skilled care to help the parent while they are home). I don’t have experience with this so can’t share a personal side to this but you ought to know it exists.
4. Parents being paid as caregivers
Many parents who have medically complex children are full-time primary caregivers for their children. This is no surprise due to our limited child care options, roller coaster of health issues, and full schedule of medical and therapy appointments. These factors are a barrier to many traditional work schedules, resulting in loss of income.
So if you are caring for your child anyway, why not be paid for it? Some states, such as Colorado, does exactly this. Whether the amount is less or more than your salary outside the home, it is still higher than nothing, right?
SELF-PAY CARE OPTIONS FOR YOUR MEDICALLY FRAGILE CHILD
1. Care.com
This online portal is a place where you can search for babysitters/caregivers, pet-sitters, and cleaning people. There is a specific section to search for “special needs caregivers” where you can filter by your child’s diagnosis. It’s free to join in order to browse caregivers for a limited time but you’ll eventually need to join in order to create a profile, post a job or contact a caregiver.
This could be an option for children who live in a state where nursing care is not available or do not medically qualify for nursing but still have extraordinary needs. It can also be a great option for those who need a caregiver on select occasions (“date-night sitter”) or who need child care for more than one child. If your child is in a respite program but you are responsible for finding the caregiver this could be a good resource, too.
Some examples of types care providers you’ll come across while browsing on Care.com include certified nursing assistants, special education teachers, and nurses. Some may be looking for extra-income while in-between jobs while others are in search of regular work. Rates will vary somewhat based on where you live but generally special needs providers will cost about $15-25/hr.
As with anyone you employ directly, you must do your homework for safety and security. Care.com includes a very basic background check and a more extensive check is available for an extra cost. I would always check references and keep a copy of the person’s driver’s license. Another convenient feature care.com offers is the ability to pay through the website if you prefer.
Our experience with Care.com
We had good experiences with two caregivers from care.com. The first was a nurse who had emigrating here from overseas whom we hired for “date-nights”. We felt comfortable with her skills and her ability to care for our son in our absence so were able to have a few movie- dinner dates thanks to her.
The second was a graduate student to help us a few evenings per week who acted as a “mother’s helper”. Although she was not trained medically, she served as a an extra hand while I was in the home. I wasn’t able to leave the house but I could do household chores or catch up on emails without having one eye on my son the entire time. I also taught her to do physical therapy exercises with our son during her work hours which was a big help. I’d say care.com might be worth a look if you are in search of paid care.
2. Professional Live-in Care
We learned about this option in recent years through a company called Apex Pro Au Pair. An au pair is a live-in person from a foreign country who is given a special visa from the government to provide child care in a family home for up to 45 hours per week. They are typically younger (18-26) and are interested in coming to the U.S. to learn a new culture and gain experience.
There are a number of different au pair agencies but ProAuPair specifically recruits professionals such as nurses, occupational and physical therapists, and special education teachers. This is different from typical au pair agencies who do not require the candidates to have any professional trade. Some au pairs have just graduated from school and others have had some additional work experience such as teaching in a school or working in a group home for people with disabilities. The interviews are conducted over Skype until you find a good match for your family. You then welcome them into your home as a family member to give them the full cultural experience!
It sounds a little scary but the advantages to this type of care is the flexibility of work hours and their ability to care for multiple children. These young adults eventually grow into your family and really come to know and love your children.
The cost for this type of care was about $30,000 but will be significantly increasing in 2020. Unfortunately, we will not be able to continue with this service. The cost is the same regardless of the number of children being cared for but BEWARE OF THE INCREASED COSTS!
Our experience with a professional au pair
We have absolutely loved having a professional au pair! We have had two au pairs (both nurses) and they have added so much to our family. Not only does it provide an incredible amount of flexibility in our support system but it has helped our son tremendously. I will be honest and say that some of the milestones our son reached in the past two years are due to the consistency from the au pairs and their ability to focus on certain goals during their time with us. My husband also travels quite a bit for work and we have no family locally. For that reason, it has been quite reassuring to know there is someone else at home, especially for an emergency such as an ER visit or snowstorm.
Again, nothing is perfect but we’ve been fortunate having two amazing people live with us. Finding the right match for your family is the key to this type of care. After all, they do not go home at the end of the day! This option is also quite a large investment, but if finances allow and you have a need for consistent, flexible, full-time care it might be worth considering.
We all know that special needs care support is not easy to come by, but often times new parents are not even aware of what is available. I hope I’ve give you some useful information and if you have any questions, please contact me at specialneedsgps@gmail.com or leave a comment!