Please consider adding workplace assistance to the Building Independence waiver as a billable service. This would greatly enhance employment services for those who may be independent in housing but needs more on going supports when working on community jobs.
I have been in the field over twelve years. I have yet to see an agency, outside of some nursing providers, successfully staff families. Now, you would like to increase their caseload (reward) them with referrals of hundreds of families across the state of VA, many of which they have utterly failed before? Families who have finally found their “groove” (survival)? Families who may be somewhat functionally equipped at this point rather than literally drowning to barely survive and still being grateful for the few hours they may have, because they’ve finally found a way to make things work for them?
Agencies already have a higher overhead and reimbursement rate than CD services - how could this be cost effective? How can this be accessible to those who need it most?
Just last week (last week- think allll of the rate increases in the last three years) a mother opted for CD services - she asked the rate of pay and I happily told her $16.45 (nova) - she gasped, “how can that be?!” - in confusion I asked her how that couldn’t be?! …
The AGENCY, licensed and governed closely by DMAS to be fiscally responsible, had just given this woman a raise in an effort to “retain” her.. to TWELVE DOLLARS PER HOUR. There is no other way to package that up, they’ve been exploiting this mother for years. Perhaps it was her presumed lack of education? Her primary language being Spanish?
Or maybe it was just their bottom line. $12 per hour. Northern Virginia. DMAS licensed AGENCY. 2023.
If “oversight” and “fiscal responsibility” is the premise for these imposing regulations, I would love to know where the Agency Directed accountability, licensure review, oversight and fiscal responsibility has been for these agencies for the past three years.
Families of given up careers, lifestyles, basic comforts after the public schools failed their children, to ensure that the children continue to thrive. To the expense and comfort of their own families- giving up nursing, banking, small business owners or other careers all for for $12.70/$16.45 an hour. Can you imagine the number of LTC admissions that would’ve occurred if these parents had not selflessly stepped in? The world can’t find staffing today- “post” pandemic- who would care for them?!
I would love to see the statistics for the utilization cost of waivered services 3-5 years pre-pandemic, I imagine it was horrifyingly low, compared to finally allowing these kids to use their much needed supports.
Parents need the option to continue to be caregivers for their disabled children They do not need to undergo time-consuming training or work for an agency--they know their own children and their needs best. Imposing needless guidelines on parents so they can continue to care for their own child in home is ludicrous, especially when other caretakers are often not knowledgeable, not available, or unreliable. Please don't make it difficult or impossible for parents to remain caregivers for their disabled children.
As the parent of a child with significant disabilities who currently receives services through the FIS DD Waiver, I have significant concerns regarding proposed regulations on page 175 of the Application for 1915(c) HCBS Waiver: Draft VA.006.05.-- - Jul 01, 2023.
As written, these regulations erect significant barriers to waiver participants accessing vital waiver services:
I cannot believe that I am yet again fighting for my kids to get their basic care needs met. Every single day it is a fight, iep's, 504's, therapy and so much more is a fight. Fighting with insurance to pay for medications or food or supplies for daily living... its just not right.
When my daughter was first eligible for the waiver we attempted to use an agency for care and it was extremely hard to find someone willing to come to western Loudoun. Also, the person they eventually sent was a smoker and my daughter has respiratory health issues and that was not ok. That is when we decided to go to consumer directed care.
It has been extremely difficult to find care that would accept the pay that was given. We now have 2 children on the waiver and our youngest is autistic and has a feeding tube. We have had many attendants and one who stole from us and enough that we pressed charges.
We do not feel as though there is a person who is willing to give our children the care they need, ie... eyes on them at all times due to laryngospams that cause vocal cords to completely close which causes them to stop breathing. These can happen at anytime and without warning. With the current pay rate where it is.
The world as whole was changed when Covid 19 became a part of our lives. Many corporate businesses have gone to 100% virtual work because they see the benefits of parents being at home and having a shorter commute and all that comes with work from home life.
Being the primary caregivers since covid has been huge. We know our children and we know their specific needs and we are in a groove and though finding care would be great it is for sure easier said than done.
Keeping parents as the caregivers for children is not a new thing, many states utilize parents as care givers and it has greatly improved the care of the children and kept families together rather than split do to needing to be in a care facility.
Please, do what is best for the families who actually have children on these waivers. Listen to us! We deserve to be heard and we deserve to choose the care given to our children just like other families with able bodied children get to. We shouldn't be penalized because our children require more care than others. That would be discrimination. Forcing parents to have to go thru an agency to be able to provide care and be paid is not ok. I can tell you, I know more about my children's needs than even the specialists and providers they see. We have great doctors and yes, there are some things they are able to do more for our children but, we live with and care for our kids every single day and we are the best providers they will ever have. We know them. They deserve the best care possible.
Help ease our minds by allowing things to stay as they have been through the pandemic and let us provide the care and receive pay for that care. We have to jump through all the hoops every single month to prove they still need care, help us by keeping parent pay and allow us some slight peace of mind.
When covid hit we took a major loss in finding anyone to work with our 2 sons, it's hard alone to find attendants who want to work for little pay, no health insurance along with other things that should be offered. When it opened for parents to be able to work with their kids we took the opportunity and it has been a blessing, less stress for our selves and our children. Now we have to fight another battle and keeping that opportunity AS IT IS. Your loading more work for parents and agency when it can stay the same and continue as it has been. Now we risk not only losing the opportunity to keep our kids healthy from strange attendants if we can even find someone to work. This is pure bs, and we feel violated for not only ourselves but our children. It should not be this hard.
As a mother of a medically complex 7-year old, I am adamantly opposed to the proposed change that would force Consumer-Directed families currently receiving Appendix K to switch to Agency-Directed. I can see zero advantages to creating even more barriers to receiving these benefits and many, many disadvantages, including:
-increased paperwork for families like mine
-decreased pay for families like mine
-more stress, chaos, and change for families like mine
-less freedom for families like mine
I urge to consider leaving it as Consumer-Directed.
My son was FINALLY awarded a slot on the DD waiver after years of waiting and struggling to find any help. When he was finally awarded the waiver slot we thought our troubles would be over. We signed up for agency directed care because I was so busy caring for my son that I knew I would not be able to give my full attention to finding him a caregiver that would meet his needs.
We tried to find someone through multiple agencies for over two years. In all that time we only found two individuals who were willing to attempt working with my son. One ended up not being able to pass the full background checks. The other was absolutely scared of my son and quit after 4 days observing me take care of him.
In the end we made the decision to move to CD so that I could become his paid caregiver. It’s not what we wanted but it has helped us as a family. I am already familiar with everything my son needs in his daily routine. I know that he is well looked after. It is our hope that, in time, as he gains new skills that we will be able to find an outside caregiver to help support him.
Now you propose taking away the option for us to continue to use CD if I am to continue as his paid caregiver?! You’re proposing that parents be referred to agencies to become their employees? Why? They failed us for years. Why should I now how to go through their training (which didn’t adequately prepare the one caregiver they could find for us) just to care for my own child?!
Families should continue to have the option of using agency directed care IF THEY SO CHOOSE. No family should be forced to use agency directed care simply because they are using the parent as the paid caregiver - regardless of the reason why they are doing so.
We live in an area of the state where there isn’t easy public transportation to our home. We also have hours of care that are determined by my son’s school and sleep schedule. We didn’t come to the decision to have me act as his paid caregiver lightly. By keeping his routine steady (not constantly changing caregivers) we help to make his life better. He thrives on routine and deserves to expect a high level of care.
Please don’t force this change on families. We already deal with so much.
To whom it may concern, I am asking that you do not change the current option for parents or spouses to provide attendant care for their loved ones.
My son has had services for many years, and while thankful for it, it has been a struggle to say the least. Trying to find staff has always been challenging and we often had to hire unqualified staff because we had to work. Many times this has caused him or others harm. That was pre-covid, after the pandemic finding staff has been impossible. We have tried many routes without success.
Trying to work when you have a loved one with a significant disability is extremely hard and stressful, adding to the pile of stressors we face daily. Having a parent pay option has relieved so much stress for us and most importantly for him. He is safe, understood, and able to participate within his community.
Without this option, many families will be forced to choose residential facilities, taking children away from their homes and families where they are happiest and best supported.
Why would the state do this to parents after they just did a fabulous thing by allowing parent caregivers recently? We’ve made plans arounds this new program. We have enough stress with medical conditions, behavioral issues, medical and therapy bills, and school ieps but to put us through yet another massive paperwork process with more background checks and other unnecessary fees for state to pay is awful. Many of us who can not work due to inconsistent staffing and care have chosen to be parent aids. In my case, I have 2 children with special needs and it’s just impossible to work yet the bills keep stacking up. Appendix k was life changing. Lower wages and more paperwork is not something any of us need or want.
My daughter holds a CCC+ waiver. She is 18 months old and has Lissencephaly, a fatal neurological condition. I am her paid caregiver. My daughter requires a level of nuanced care that another caregiver paid at the measly rate the state provides would be unable to provide. Because of my daughter’s complex medical needs, I have been forced to stay at home. If you care for our most vulnerable children, you will vote to continue to allow parents as caregivers. I invite you to come to my home to see the level of care my daughter needs and deserves. No one cares for our Virginia’s children better than their parents.
I will be following up with a series of phone calls and emails do you understand the importance of your vote and the impact the wrong decision can make
My son is on a waiver and I’m his paid caregiver. When we first got the waiver I tried to go agency direct , but couldn’t find anyone. I find it hard to understand why parents/spouses need to go thru an agency to care for their own child/spouse. Sense my son is a minor I had to pass two background checks. Parents don’t need any additional stress either. We have IEP stress, medical stress and what the road ahead looks like for our loved ones. Please leave it like it is. As it would be one less thing for us to worry about.
Life as the parent of a person with disabilities is not easy. We did not ask to be taken on this path, our family members did not ask to be disabled. But CD care has been a Godsend. While working full time, I had in-home care. They did not show up( car trouble, snow, no reason) , I had money and other things taken. When I became his caregiver, all this changed. To remove this benefit would be throwing yet another obstacle up for us. Negotiating all the therapies, the paperwork, the requirements is mind boggling. There are days when I am so stressed I feel like giving up. I am on high alert all the time. This has given me some peace of mind and security. Please listen to those affected the most, parents and caregivers.come and walk a few miles in our shoes. See how difficult it is to find help,especially with low pay, no benefits. We have so many hoops to jump through and any relief is much appreciated. Thank you for your time
Please, please, please do not make parents of minors go through an agency to be a paid attendants. This should remain consumer directed!!! My child just recently started under the ccc+ waiver and she is 6 years old. Despite having Down Syndrome, we had such a battle to receive benefits in the first place. I have been "on duty" 24/7 she was born. I cannot hold a regular job due to her needs so the 30 hours per week that I now receive payment for has made a huge difference in our lives. Every day parents of children with special needs have to fight for rights. Please do not put another obstacle before us!!
Services under FIS and BI waivers are vital for people with disabilities to remain in the community. It became much easier to manage when Appendix K went into effect to allow parents of minors and spouses to act as paid caregivers.
Finding a qualified caregiver through an agency or under consumer directed care has been difficult for years and only became more difficult during the pandemic. Adding in a barrier to require parents and spouses to be registered through an agency to be paid for caring for their loved ones only makes their lives harder.
Caring for a child and/or person with disabilities can be difficult. Please do not make it harder, please allow for caregivers to continue on with providing care and being paid for this vital work.
Services under VA Medicaid waivers are vital for people with disabilities to remain in the community. Ever since Appendix K went into effect to allow parents of minors and spouses to act as paid caregivers the quality of life for our disabled child has increased. He finally had a qualified caregiver that could provide the consistency and level of care he requires to thrive.
Finding any caregiver, let alone ones qualified to handle our sons many challenges, through an agency or under consumer directed care has always been a challenge and became impossible during the pandemic. Adding barriers requiring parents to be registered through an agency limits consumer choice and adds no value to the care of our loved ones.
Please do not limit our choice, parents of minors and spouses should be able to continue with providing care through consumer directed service facilitation.
We are one year into our FIS waiver with Consumer Directed Care for our adult son. We waited three years on the wait list and finally have some peace of mind with me being his full time caregiver. We do not see how forcing me to be employed by an agency and being "qualified" to care for my own child is in any way rational. No one knows him better than us. He has complex medical needs that cannot be handled by an attendant so we would need a full time nurse as well to administer his medications. He is not capable of self medicating. So, we would be paying two people to do the job that one does now. That doesn't seem practical or judicious. Families like ours have enough obstacles to overcome (as do our kids) without interferences from outside making it more difficult for us to care for our loved ones. There will be no stranger(s) in our home and lives. It is too dangerous to our son's well being. His very life may depend on it.
The oversimplification of the posted proposals and rationales completely ignores the dilemma and complexities around providing personal care and supervision for our family members in need. We have always remained self-directed for reasons of safety and security. Being self-directed provides us the opportunity to ensure that the people that come into our homes (read that again - into our homes, personal space and lives) are adequate, dependable and safe. The difficulties around hiring staff are not complicated by this dilemma - Direct care givers are paid better than agency. However, hiring is complicated by the necessity to find willing, available, qualified individuals that are also fit and up to the job. Our Daughter is an ID autistic that can often times be behaviorally combative. As a result, we must be selective in whom we bring in to care for her, even more complicated for her as a teenager. Allowing her mother to be her paid caregiver has lessened the burden, and improved our quality of life and our ability to provide for her not only today, but with fiscal planning for future.
There is enough governmental agency involvement in our lives. In our homes we face endless paperwork and reviews and meetings between school IEP's, Therapy programs and ISP's, the case workers, agency representatives, not to mention just the daily anxieties and challenges of helping our daughter be safe and grow into the best person that she can be. What has worked for the last couple years has done just that - it has worked. Why complicate the current process with more bureaucracy when it has worked as-is under schedule K? The fact that is has worked for so many family's is all the proof that is needed.
The Service Facilitator is already in place to check on consumer condition and welfare as well as provide resources and information. The patient care coordinator from the Medicaid provider is already managing the case from the medical needs perspective and in our case the county Services Board (RACSB) has an involved caseworker to further check on and advocate for our daughter. I would suggest that the mechanisms are in place already for our daughter's well-being, fiscal, safety and security oversight - there are enough systems and protocols. Don't oversimplify our challenges with the proposed changes and rationale.
During the waiver process I was given a list of procedural safeguards. The text specifically states, “Choosing your providers is your right.” My family and others should not be forced into agency directed care. Primarily, because it would violate our right to provider choice. Additionally, the implications of this change would be a substantial detriment to families across Virginia. Finding someone to care for our loved ones is difficult. This population of individuals present significant care challenges. Despite my best efforts, I have NEVER secured consistent, reliable care through an agency. Do not infringe upon my right to choose my own provider. Do not create more barriers for parents and spouses to provide safe and reliable care.
I have three children with waiver services. They are still under 21 and have SIGNIFICANT disabilities. I had to quit my job last year because I was UNABLE to continue to miss work and was going to be fired. I had attendants QUIT due to the level of needs & physical harm my children caused them, along with the poor pay and benefits. We tried agency years ago and they never showed up on time, or would not show up AT ALL! They also CANNOT DRIVE CHILDREN UNDER 18 & KNOW NOTHING ABOUT THEIR CARE! I have had to become an attendant to make it through these hard times, & I was able to find someone good BUT THEY CAN ONLY WORK Weekends or evenings! Forcing us to go through an agency do to me, needing to be an attendant, prohibits me from actually using caregivers that I find that will be able to take care of my children and help. It does not allow for this mixture. You should absolutely not force families to go to an agency until you can guarantee that children under the age of 18 can be cared for appropriately by agency staff. THEY REFUSE TO EVEN DRIVE CHILDREN!!! They know nothing about care for children. There may be some out there who are, but there is not enough to ensure proper care of these Medicaid waiver participants, who are under the age of 18, and that is therefore discriminating against them due to age, my children are being discriminated against by D mass because they are under the age of 18 they are not given the same and equal opportunities as those above the age of 18 they care is not out there via agency directed services-it’s not equitable. Until you can guarantee the equability of agency directed services for those under 18, these proposed regulations are discriminatory & HURT CHILDREN & FAMILIES WITH DISABILITIES!!
I have three children with waiver services. They are still under 18 and have SIGNIFICANT disabilities. My wife had to quit her job last year because she was UNABLE to continue to miss work and was going to be fired. I had attendants QUIT due to the level of needs, physical harm my children caused them, along with the poor pay and benefits. We tried agency years ago and they never showed up on time, or would not show up AT ALL! They also CANNOT DRIVE CHILDREN UNDER 18 & KNOW NOTHING ABOUT THEIR CARE! I have had to become an attendant to make it through these hard times, & I was able to find someone good BUT THEY CAN ONLY WORK Weekends or evenings! Forcing us to go through an agency due to my wife needing to be an attendant, prohibits our family from actually using caregivers that we find that will be able to take care of my children and help PART of the time. It does not allow for this mixture. It builds barriers for parents to handle transition from caregiver to caregiver, when we are actually able to find people. The turnover rate for attendant AD and CD is HIGH. You can’t say that isn’t true. You should absolutely not force families to go to an agency until you can guarantee that children under the age of 18 can be cared for appropriately by agency staff. THEY REFUSE TO EVEN DRIVE CHILDREN!!! They know nothing about care for children. There may be some out there who are, but there is not enough to ensure proper care of these Medicaid waiver participants, who are under the age of 18, and that is therefore discriminating against them due to age. my children are being discriminated against by DMAS because they are under the age of 18 DMAS is not giving them equal opportunities as those above the age of 18. The care is not out there via agency directed services-it’s not equitable for those under 18. Until you can guarantee the equability of agency directed services for those under 18, these proposed regulations are discriminatory & HURT CHILDREN & FAMILIES WITH DISABILITIES!! You need to LITERALLY PUT YOURSELF IN OUR SHOES! How would you work if an attendant didn’t show up? If all of a sudden someone quit and you and/or the agency could not find coverage FOR MONTHS?? This is the reality we live in every single day, and not just until our children turn 18…. For the rest of our lives. How would you keep a roof over your family’s head? We are just trying to make it through and care for our children. We are not trying to just make money. We are trying to care for our children who REALLY need this care. There is no one out there for thousands of us. If you don’t see that, then please open your eyes becaus Our children depend upon it!!
Governor Youngkin and Michael Webert PLEASE stop this assault on the rights and well being of Virginia’s citizens with disabilities!! Consumer driven care is about dignity and efficiency and to think that this is under attack from people elected to maintain the rights disabled Virginians is unconscionable. Advocates for the disabled know more than their share of one step forward two steps back. This decision to take away a parent’s ability to care for their child and force the use of an agency is cruel and ineffective. The cost of caring for our children, who you obviously see as a burden to be unloaded, will not be reduced by this move. It will simply be money redirected away from our individuals to the middleman (an agency that probably funded your campaign) and less going to the individual in terms of the care they want, need, and deserve. You talk about less government interference but you literally are aiming yo tell my daughter who can and cannot help her with hygiene (bathing, toileting, and menstrual care.) How dare you?! Governor Youngkin you solicited the Christian vote in your campaign. You came to my church. “Whatsoever you do for the least of My brothers you did for Me.” That’s from the gospel of Matthew. Our children ARE the least of your brothers- through no fault of their own. I guess the words of Jesus Christ Himself aren’t good enough for you? You wouldn’t have allowed Mary to care for her son? Because a lack of care for our children will be the true result of this decision. Employees call out sick. Mothers don’t. Employees don’t show up. Families do. Employees sometimes don’t care about the quality of their work. Fathers do. Who will suffer? The individual who qualified for this benefit, that’s who. You’re changing the goal post. That is so unfair to the mothers and fathers who have slogged through the failures of low standards and the accompanying bureaucracy for decades. You want MORE FAILURE for our kids? Leave the consumer driven component alone when it comes to the waivers!!!! Unless you have a child with disabilities severe enough to find yourself in our shoes you don’t have a clue what’s needed for them to thrive. It’s so damn hard. Virginia is still under investigation by the DOJ for a failure to protect the rights of individuals with special needs. It’s a disgrace that you want to undo the progress made by Virginia to care for its disabled citizens.
This violates provider choice rights. This infringes on our rights of provider choice. It was difficult before Covid to find attendants willing to work for the hourly pay of a child with disabilities. Now you want to add another layer of bureaucracy and further reduce the wages that attendants will receive. When does this end? Parents of children with disabilities have enough on their plates without the government adding more burden. We have enough hoops to jump through to get services and care for our children. Instead of making up things as you go along how about including parents and asking us what we need and how you could streamline processes that help families instead of adding more stress to our lives. This would eviscerate ‘consumer choice’.
????Please act now - don’t wait! It’s really important for us all to note that this wording violates the families provider choice rights. That is part of the procedural safeguards associated with the start of services. As a service facilitation company we can’t infringe on our clients right to provider choice. Therefore why should DMAS be able to infringe on their right to have a choice of providers or even limit your choices in any way. ????
Consumer choice is essential for individuals with disabilities so that they can determine who cares for their needs and supports their desires and rights as a person.
Requiring legally responsible adults to become employs of an agency:
1) strips waiver participants of the right to choose participant directed services, and removing this right is based solely on the participants disability and extraordinary care needs that result in the need for a legally responsible adult to provide care
2) places an undo hardship on caregivers who are already caring for their individuals 24 hours a day, 7 days a week. These caregivers have already been identified as the most qualified individuals to care for the consumer with a disability, already have the training from years of caregiving, and can identify nobody else to provide the care that they are providing on a daily basis. They are unable to leave their individuals to attend training or testing for certification and likely will not able to meet these requirements solely due to their existing caregiving responsibilities - because the very nature of this service means there is nobody else to provide this care.
3) Agencies are already understaffed and cannot meet the needs of existing clients. They do not have staff to train, certify and supervise an influx of new parent/spouse providers. There are no increases in the budget to support this increase in staffing demand for agencies.
Please renew Family and Individual Supports (FIS) and Building Independence (BI) 1915(c) Home and Community-Based Services Waivers to the U.S. Centers for Medicare and Medicaid Services to protect the rights of individuals with disabilities.
“Whatever you do the the least of my people, you shall do unto me”- Jesus Christ
While I wholeheartedly believe in separation of Church and State- I will NEVER vote for a candidate who takes away social services or social assistance from our most vulnerable.
So, here's my two cents. We have had assistance with our youngest for over 10 years. In that period of time, we have had so many attendants, some for a while, some only lasting a few weeks. Then there's the literally hundreds of interviews scheduled where they didn't show up, or did show up, said they'd like to work for us and then ghost us. The difficulty in finding an attendant, never mind one you are comfortable with caring for your child, is significant and when you have one who works out, at some point they leave for more pay and benefits, giving you two weeks notice and now you're scrambling again. We have never used agency, but from what i have been told by numerous people is agency has its' own issues. One person I know, in particular, had to quit their job because either their child's agency would call saying they didn't have anyone to send that day or the person they sent wasn't properly caring for their child's breathing equipment (with the risk being the child dying because of their negligence). Also, our child is very particular and would never allow someone of the opposite sex to help them with their personal care (understandably so as they are a teenager), which narrows who can be sent to our home. In addition to the fact that with autistic children (and children in general), consistency is key. Different people showing up different days doesn't work for our child. it takes our child time to warm up to someone and until they do, they're not going to listen to that person. As to another agency overseeing everything, I'm not sure why we need yet another agency to make sure our child is cared for as we already have multiple agencies who are in our home (including ABA therapists who are here several times a week) who observe and/or work with our child. In addition to all the people who see our child at school. We don't really need one more to deal with. As to the financial aspect of things, my husband stayed home with our youngest for several years, so for a time we were a one income family. The stress on both of us because of our financial situation, on top of having a child with special needs and health issues, was extreme. Honestly, we literally almost ended up having to file bankruptcy (and were looking into WIC and Food stamps) before we were able to find an attendant and my husband was able to find work again. We also sold everything we owned of any value, including a piano my husband still misses. If he had been able to be paid for caring for our child, that would have been a huge help for us. Luckily things worked out for us back then, but it was a near thing.
This is outrageous. First of all, there are no competent staff flexible enough to work with us. For our son Joshua, we need someone who can work 6:30 am to 9 am, go home, and then come back at 2:00 pm because our son is still in school. Furthermore, due to the staff having fixed schedules, they cannot accommodate us whenever Joshua has to miss school because of his poor mental state. We are left a team home with no help, if they were ever a help at all. This staffed agency does not work for families with children going to school, it only works for the elderly.
Second of all, when they do send staff, they have no experience with handling mentally ill individuals. Since my son is non verbal, the staff can't understand what he needs. As a result, they only escalate his frustration, triggering his aggression and self injurious behaviors. My son has bitten staff several times, causing a danger to both the staff and himself. Because of this, I constantly have to be at home to watch the staff and Joshua in case I need to intervene. Not only that, but we ourselves have to train the staff with how to deal with Joshua, and oftentimes, the staff quit after only a few weeks. We are left with no staff for months as the agency tries to find a new staff, and we are constantly cycling through staff. This lack of consistency is detrimental for Joshua's development with people coming and leaving all the time.
Third of all, the agency policy is that staff cannot drive and take the children outside to play or socialize. This means that in the summer, I have to always be there to drive the both of them if we want to go anywhere. This program doesn't even take the stress off our shoulders. The alternative to driving around all day and chaperoning an inexperienced stranger with Joshua is to let Joshua rot away inside with the staff every day. They do not play with him, and he is subjected to listlessly sitting on the sofa all summer. Although this program's purpose is to give the parents a break from childcare, it does the exact opposite. Instead, it chains us inside the home for the entire summer. In all, this program does not work during the school year nor in the summer.
The only solution fit for families like mine is to continue the paid parents and consumer directed option for underaged children. Ever since we switched away from the staffed agency and became paid parents, our lives have been significantly bettered. Joshua has never been happier; his quality of life has tremendously improved because we are able to give him the best care, any time and any place. By paying the parents as attendants, we are relieved of the stress of finding another source of income to support our son, which we wouldn't even be able to do with the staffed agency anyways because we would have to be at home to chaperone all the time. Ultimately, we strongly believe that you should continue the program with parents as the paid attendants through the consumer directed option. I cannot foresee a future where we have to accept these unqualified strangers into our home and watch Joshua begin to self injure again. The paid parents through the consumer direct option is the best thing to have happened for Joshua's health and our family as a whole. I beg of you, as parents of your own, PLEASE do not end this option.
Please do not change this waiver. It is greatly needed by families in our state. It is already so difficult to make ends meet and provide the support needed for our children with disabilities, to do this would be going in the wrong direction and not moving forward and making progress that is desperately needed.
I am a parent and primary caregiver of a fragile, medically complex child and I am deeply troubled by the proposals regarding the paid parent caregiver option starting on page 174 of this FIS Renewal application.
We are a family that doesn’t fit neatly into any particular box, as many of the families who care for medically complex children tend to be. We have spent the past three years on waitlists with several home nursing agencies without ever receiving news of a single qualified candidate. Due to our daughter’s declining health, increasing fragility, and lack of availability of qualified caregivers, we made the very difficult decision several years ago, with the support of her entire medical team, to forego nursing altogether due to unsustainable risk.
For the last several years, we have relied on attendant care to help us manage the intense level of 24 hour care and monitoring our child requires. Prior to COVID, we had several mostly unreliable personal care attendants to assist us in attending to her daily needs. For the last three years in particular, since COVID and since our daughter became ventilator dependent, we have done it all on our own. We came to realize after multiple hospitalizations that our daughter just cannot sustain the infection and mishandling risks associated with outside caregivers coming into our home.
Every virus results in at least a week-long stay in intensive care and every time she gets sick, her health status further declines giving us less “wiggle room” for future illnesses. My husband had to leave his part-time job in spring 2020 because it became impossible for one person to manage the daily responsibilities to our home, the education needs of our three other homeschooled children AND handle our daughter’s 24 hour care. His part-time job income was keeping us afloat, but it would do no good if I succumbed to the incredible stress of managing everything at home on my own.
When the Appendix K paid parent caregiver option became available, we were able to find some stability again. We have been able to ensure that our child is safely cared for at home by the people who know her best.
The restrictions to access of this critical program would completely hinder our ability to participate, while leaving us once again with the entire burden of care and no relief in sight.
There is no personal care agency on this planet that is going to take on a patient with the level of care my daughter requires even with one of her parents as that caregiver. Also, because we are so entrenched in managing everyday life and careers on top of managing the care of our complex child, we have no way to safely leave our child in order to attend whatever onboarding and training would be required with an agency. This is why consumer directed choice of care is SO critical. The proposed points create undue barriers and essentially strip families like ours of our choice to maintain consumer directed care while forcing us to put our child’s health at risk if we want any relief at all.
Lest you forget, parent caregivers are in the unique position of being already trained for the job, already possessing years of experience in the care required by the child, and maintaining a deep personal investment in their child’s well-being. We are already here on location, ALWAYS available, fully understanding of the job and willing to do the hard work for a mere $12.70 per hour. For our family specifically, whose only alternative is private duty nursing, the costs are drastically reduced. A private duty RN costs the state $38.50 per hour. An LPN costs $28.66 per hour. You do the math.
Continued unburdened access to a paid parent caregiver option equates to efficient, safe care for these children, cost savings for the state of Virginia, and much needed financial relief for already overburdened parent caregivers doing the work every day.
Please don’t bury this critical program in all of these unrealistic and unattainable mandates.
As the parents of a profoundly disabled child on the CCC+ Medicaid waiver and waiting list for the DD waiver, we strongly oppose the DMAS proposal to eliminate the current Appendix K allowance for parents to be paid caregivers. Of all the myriad things that are broken with the convoluted system that is Medicaid, Appendix K is the one positive thing that works well and provides a small amount of hope and relief to families who are struggling to keep their heads above water. Eliminating the existing option for parents to be paid caregivers, therefore requiring them to be hired through a staffing agency to be compensated to care for their loved one, would be burdensome, disruptive, and is just plain non-sensical. What is the point to this proposal? Who exactly would benefit from this change in policy? Certainly not our vulnerable children who are serviced by these Medicaid waivers.
Our eight-year-old son is blind, autistic, non-verbal, incontinent, and developmentally delayed. His needs are extensive. There is not a single activity of daily living that he can complete on his own. He requires constant supervision to ensure his safety. We are his parents. Who does DMAS think is better suited to care for him? Certainly not a stranger assigned to us by a care-giving agency. And nothing is more insulting than the notion that parents could apply to be hired by such an agency and continue to be paid in that fashion to care for our children. I don’t need an agency to train me on how to best care for my child, and I certainly don’t have the time or energy to train one of their staff members on how to care for him. That’s assuming an agency could provide an appropriate caregiver in the first place.
A quick search on Indeed for local businesses hiring in our area shows that Wendy’s is paying $14 per hour, CVS is paying $15 - $17.25 per hour, and a local hometown coffee shop is paying $13 - $18 per hour. Which DMAS staff member or Virginia lawmaker would like to take a leave of absence from their current position and come and care for our son for $12.70 per hour? Please let common sense prevail, listen to the pleas of parents who are living this life day in and day out, and leave Appendix K in place.
Stephanie & Adam Brennell
When my child was approved for Medicaid we started using Home Health Aides for our Non-verbal autistic child. That was over 10 yrs ago. Within the last 10 yrs we've had over 100 aids coming and leaving our front door. It took time to build trust and in most cases it never progressed to that level. We were never able to find the right person to care for our son and if we did they would always leave because our child was too difficult to care for as he entered puberty. When I learned about the Consumer Direct with parents being caretakes that was godsend. I no longer had to watch my child and the aides as I never felt comfortable leaving them alone for more than 10 minutes. Please do not take this service away for parents like myself.
Please please maintain the consumer directed option for parents to be the paid provider for their children with special needs. The agencies do not have anywhere re enough staff and the staff is not well trained to work with children nor do they have the flexibility of scheduling needed. My daughter-in-law struggles even before Covid to find caregivers through an agency. If she had to work for the agency it is just an extra step and more paperwork that is not needed for a process that is working well and has been for the last 2 1/2 years. Don’t make those who are already overburdened taking care of their children. Please value their contributions and don’t make it harder.
Why have to change the system when it’s already work out. Parent is the best caretaker for their own child. Why do you need to make thing more complicated for the parent to be able to take care of their own kids! Who else will love your kids more than you do and put the best interest of the child first. When parents need to stop working and stay home to take care of their special need kids, they should get compensation instead of having to go to work and hiring a stranger to take care of their special need kids!
So instead of properly paying parent attendants you’re going to put more money in Agencies pockets? Literally EVERYONE wants to have their hands on my disabled son for profit. Case manager for this, for that, for this other one. But GOD forbid parents claim the pay to care for our children because there’s NO DAYCARE options, no YEAR ROUND school help, no agencies that come to our rural area or take care of kids. What happens then? No agencies service a child my sons age or my area? How will I sign up to work for an agency? It will be another service for families that looks good on paper so Virginia can pat themselves on the back but really ineffective for families and a wasted service.
Parents should still be allowed to be the paid caregiver if their children. A lot of these children have several disabilities and no one knows them better then the parent. What about the military families? We have no one here because we live away from our home state. Do you expect some random caregiver to come into my home and drive my daughter to her appointments? No, that’s my responsibility as her mother. This is a very bad idea.
It is detrimental to require us to us an agency just so my husband can care for our daughter. Why are you taking away our right to use consumer directed care when we cannot find other attendants? This is discriminatory.
It is detrimental to require us to us an agency just so my husband can care for our daughter. Why are you taking away our right to use consumer directed care when we cannot find other attendants? This is discriminatory.
Why are you limiting parents to 40 hours? If that is the attendant available and the hours are there, it would be detrimental to limit that one attendant to 40 hours when all other live ins get more (as long as the hours are there). This is discrimination.
I’m a mother of a child with severe autism. My son is 11 years old, he bites, kicks, jumps on you. I can’t find any attendant. To go out in the community, he needs 2 attendants. I can’t find anyone for 16 dollars an hours. Who wants to get bite for 16 dollars? And no medical insurance…nobody.
please do not add more layers to parents. We have the babies with disability, the burden is big, those agencies and DMas, and MCO only charge VA money. They don’t help. Only mothers do.
why only 40 hours a week. So when I get biten in the middle of the night, because VA lack of proper behavior units. You can’t cut the hours to disable just because parents are doing it. This is discrimination, the kids needs help.
I strongly oppose the proposed change to parents caring for consumers through the state waiver system requiring them to register through an agency versus working directly as currently allowed.
The reasons are as follows
— most importantly by changing to agency on directed model you are removing consumer rights to choose who will work with them
— Working through an agency the hours are limited to 40 per week thus imposing limit on consumer’s allowable resources.
— Agency can pay less than allowed hourly rate under current consumer directed model
— Agency will add additional financial burden to the already underfunded system with their additional inflated fees.
—Through the agency model parents cannot drive consumers to appointments or day programs thus limiting their access to waiver services
Overall this proposed change would greatly limit resources used through the waivers and in no way enhance. I am curious as to how someone in DMAS thinks Agency directed is a better consumer choice though the waivers.
This comment is in reference to the proposed changes to "Application for 1915(c) HCBS Waiver: Draft VA.006.05.00 - Jul 01, 2023", specifically Major Change #3 - Allowing for the provision of legally responsible individuals to provide the personal assistance service (pages 174-176).
A simple internet search will show that Va continues to rank low in providing appropriate support for its disabled population. This is one example. What purpose would be served by making overextended, stressed, parents qualify through an agency to care for their own children? Absolutely no purpose except to discourage them which is likely the true purpose of this. Then what? There are no caregivers willing to work for this low pay with no benefits. These agencies have already proven themselves incapable. So what next? Where does this leave our loved ones with disabilities? It’s time for Virginia families to stand up for their rights, and possibly seek out legal help. This is nothing less than harassment at this point.
Parents should be allowed because no one wants to do this job and no one else is better qualified than a parent! A parent is intelligent enough to realize that they can hire if their situation changes and they cannot perform the care. Give the parent credit for making good decisions don’t let government decide who is best care person!
I completely agree with the comments such as the one made below. I am usually proud of our commonwealth, but the treatment of our adults sons and daughters with varying disabilities in the commonwealth is demoralizing. Like many commenters have said parents/grandparents/siblings are the best providers because they know our children, have flexible schedules and are willing to provide care. Moreover, I have seen personally wide variety in the quality of non-family care givers. As stated earlier this comment aligns with mine:
"A simple internet search will show that Va continues to rank low in providing appropriate support for its disabled population. This is one example. What purpose would be served by making overextended, stressed, parents qualify through an agency to care for their own children? Absolutely no purpose except to discourage them which is likely the true purpose of this. Then what? There are no caregivers willing to work for this low pay with no benefits. These agencies have already proven themselves incapable. So what next? Where does this leave our loved ones with disabilities? It’s time for Virginia families to stand up for their rights, and possibly seek out legal help. This is nothing less than harassment at this point."
My wife was hit by another driver when she was 19, leaving her in a minimally conscious state. We had been married just over a year and I was on my second enlistment in the Army. I was forced to leave active duty due to Tri-Care not covering long-term-care for spouses. I have been caring for her at home for 21 years (unpaid). I just got approved to work as paid attendant last week. 21 years of praying and hoping for this possibility, enhancing her care, quality of life and happiness were finally realities and now DMAS is proposing to rip it all away? For what? Every study out there shows there is more fraud and abuse with Agency care than there is with CD services. DMAS pays LESS per attendant with CD services than Agencies. DMAS already skirts overtime laws with live-in attendants.
This proposed change is worse for the disabled person and costs the state more. In what world does that type of change make sense? Who benefits? Agencies and that’s it.
As another comment said, “At this point it’s just harassment”. Please do not do this. Please.
Parents are most experienced and trained
to be their children’s attendant. It is in the best interest for the child to receive the privacy, safety and expertise of a family member to provide their care.