Hello,

I do not see where I am able to review the information on CD information on the waivers. Where can I find that.

Thank you,

Robin 

I appreciate the modification of the application to include CD services. However, requiring the EOR to be a non relative, puts my child’s SSN at risk. Sure I can choose someone that I trust. But in reality we don’t truly know people do we. The EOR has access to the child’s SSN within the CDCN online system they use to approve hours. I am not comfortable with this. Please reconsider this. 

You want to limit parents to 40 hours max a week. If a child is approved for 65 hours a week, that means they need that many hours of services. Limiting parents is adverse to the best interest of the child if no other PCAs are available to take those hours and parents cannot work outside the house. I urge you to change your mind about this. 

Would you please not limit parents to 40 hours a week. My child get 58 hours a week of attendant care and I cannot find any other attendants to fill the need. Therefore, I am not able to work outside the house. Maybe consider upping the limit to 56 hours as those on the DD waivers tend to have significant needs and need the hours of support. Thank you. 

Our babies need extensive care and now you are proposing limiting us to 40 hours a week. Many of us cannot work outside the home due to the extraordinary needs of our children. If our loved ones are approved for 70 hours a week, that is how many hours of attendant hours he/she needs. Please consider doing away with the 40 hour maximum limit. We are doing all we can for our babies and are struggling so much. Throw us a lifeline. 

If we are looking at costs, it is wiser to have parents able to work all the care attendant hours and be paid directly, this money goes to the person needing care.

Training takes many paid hours that the person being cared for sees no benefit, especially when the trained person leaves soon for higher paid work and one with medical benefits (which the states do not give to full time attendants)

High turnover is training hours spent with no long term benefit

If you strip agency in who is hired from parents/guardians of loved ones needing care, then the money is actually lost to the fees and agencies- they profit while the one needing care loses out on skilled care and bonding

Anxiety, stress, sadness are heightened (most costs for mental health supports) because agencies go thru many attendants, costing money money money-

Disabled center care should be for the one needing care and loved ones are best, and the funds benefit the one needing care

"Need for oversight" is a fallacy- every consumer directed care has several social workers/case managers/ insurance managers already.

Any changes to policy that strips parent caregivers of hours, ability to have one parent as EOR, etc.  actually threatens more identity theft issues, and also lost of time and funds that should be going to the disabled person needing care.

These policy changes are only meant to make agencies RICHER, and more powerful, and more able to steal money from those disabled they claim to help.

A few bad apples should not shift a system that is actually WORKING better than it ever has.

Please keep things they way they are, not make agencies greedier and richer with bogus 'need for oversight.'  Oversight is already there- stop pretending it isn't.

Why must you continue to try an limit waiver recipients to 40 hours if the attendant is the parent? This is against the purpose of waiver in limiting services to consumer. Also new proposed rule not allowing EOR to be a family member is an invasion of privacy and will expose not only consumers SSN and private details but also attendants unnecessarily to outside person or agency. I ask you seriously reconsider both these rules.

We are all very happy that you have decided to continue to allow parents and spouses to be paid caregivers with consumer-directed services. However, there is much more to do! First, the rule of having a non-relative be EOR is simply unreasonable. This opens up a participant and their caregivers to a whole host of problems. Their SSNs, addresses, email address, and other private information would be revealed to this person. People can barely trust their relatives, how can they trust a stranger with this information. 

Second, the limit on hours is unreasonable as well. Think about this: We are all currently having problems finding caregivers now due to the number of hours available and the pay rate. So, if a live-in is limited to 40 hours and the participant gets, say, 58 hours, then they will never be able to find someone else to work 18 hours a week. If there has to be a limit, make it so the limit is based on the number of hours each participant gets. 

You guys are definitely on the right track to helping us get the help we need. These proposed changes are in the right direction, just a bit more needed to get there!

While we appreciate the addition of a provision for legally responsible adults to continue to be paid caregivers under this draft, the limitations placed such as limiting hours to 40 per week and requiring the EOR be a nonrelative who lives within 50miles places an undue burden on already struggling families. If the approval is for more than 40 hours weekly due to the care needs of the individual the limit should be up to the number of hours approved for the individual not a blanket , no more than 40 hours rule.  The new implementation of requiring eor to be a non-related person who also lives within 50miles places an undue burden on families as it requires us to find someone to complete the duties of EOR for free and also allow a non related person access to our child's and attendants social security numbers. We already have multiple regulatory bodies providing oversight, adding more forms, more hoops to jump through will not improve the care delivered to the individuals being served.  It will only make it more difficult for individuals and families to access the services they desperately need.  I recommend changing the hours limit to be the #of hours the individual is approved for based on need and continuing to allow family members to the the EOR.  We are being supervised by our service facilitators and our local csbs through case management already.  This seems like a way to force people into agency directed care which only serves to line the pockets of agencies and decreases quality of care, continuity of care and individual satisfaction. Please reconsider the above requirements.

It seems that things are moving in the right direction but there are still burdensome regulation such as limiting hours worked and require the EOR be a nonrelative. There is also language stating that there needs to be a way to ensure that if legally responsible adults are caregivers sf needs to make sure they are not hindering the individual's development.   This is offensive that the state would blanket an entire group of citizens with the assumption that we don't want our loved ones to attain their highest potential for fear of losing a check. For the tiny percentage of our population who see their disabled loved one as a paycheck and not a person please put more efforts into ensuring that existing oversights actually work.  I can't tell you how many times I have been on hold with aps for hours making reports in my work life only to have little to no follow through.  Adding additional burdensome regulations for those of us who do have their loved ones best interest in mind will not stop the people who are using their loved ones as a meal ticket.  It will only make it harder for the majority of us who are providing excellent care on a daily basis for far more hours than our loved ones will ever be approved for through the waiver system.

The limit on hours to 40 hours a week is burdensome to families and not in the best interest of the waiver individual. Many individuals on waivers have significant needs and upwards of 50-60 hours. They have that many hours for a reason.  If we were able to find attendants to work those hours, we would not have to quit our jobs to do it. Why are you making it harder for us.

As a single parent, I am very thankful for the ability to finally be the paid caregiver for my minor child on the CCC+ waiver. For many years, I could not find consistent, qualified, and reliable care providers and was unable to use the attendant care or respite hours allotted for his benefit simply because I could not find caregivers. There were times when I had to take what I could get, which were people willing to work for less than $10/hr at the time and no benefits. These were not reliable caregivers and caused even more stress. We special needs families go through so much to support our children, the extra paperwork, therapies, and mental weight of being on high alert year after year. We need to remove barriers that cause unnecessary stress like trying to find a stranger who will agree to be the EOR when Grandma, the only living family, is willing to and lives close by. We have no other family or friends within 50 miles to ask. Remember, social isolation is an unfortunate side effect special needs families live with for years and years due to their child’s behaviors, lack of understanding in social groups, and individual exhaustion. I can’t even pay Grandma anymore to provide attendant care or respite because she is the EOR and I am a paid parent. It is just convoluted. We have full-time jobs caring for all the extra needs our children have. We already have accountability with our pediatricians, developmental pediatricians, SF and CSB folks. Why can’t parents simply elect to  be their own child’s paid caregiver and it not be a matter of last resort? For many of us, if possible, we would trust ourselves over any other option. My child has been in the wrong hands more than once and I prefer to be the one caring for him. Is there room for that option? Why must we continually need to prove that we are best capable to serve our own children if we wish?  My child’s pre-K teachers who traumatized him were not even held to minimal account. There will never be a better option to support my child than me. But don’t ask me to jump through even more hoops and requirements than I already am or you could break the link that holds our family together. It should not be this cumbersome.Please continue to allow family members to be EORs. I simply have no other option. 

So because you couldn’t find a way to not allow parents to not be paid care attendants, you’re going to chop it by forcing us to find EORs so now we CANT be PCAs?! How many military families have no friends in the area that use waivers? Our children’s PRIVATE information is available for EORs to see. One parent can and SHOULD be the EOR while the other is the paid care attendant. This is how we can 1) protect our kids 2) protect their information and 3) you can bet we will all be coming to you demanding pay for the EOR we are forced to hire. So are you going to be paying for their background checks? Because we can’t let just anyone have our kids info. Are you going to pay them for the amount of time it takes to input and approve the information? 
you couldn’t find a way to scrape parents from being paid care attendants the first time, so you came back with this to really make sure you can’t. 

We are a military family, with no friends in the area or trusted individuals. We have some relatives. With the proposed changes, you are saying we cannot be the EOR(me) and have a PCA (my spouse) because it jeopardizes our children. No. What jeopardizes our children is finding a stranger, one who isn’t getting paid to do a tedious and time consuming job, to have access to very sensitive information about them. They will have access to addresses, the socials of the PCA and the child, every single thing that we aren’t supposed to be handing out to every Tom Dick and Harry on the street. We all as parents know this is because you had too much public outcry from parents about needing to be agency directed and go through all this training to take care of children we have lived with their whole lives. So because you had congress crawling up your ends on keeping live in PCAs, you are now trying to remove them another way. 
So, DMAS, will you be paying the new EOR we are supposed to find? Will you be paying them the high rate expected, since this is considered a data entry position? Will you be paying and providing the same background checks? And liability insurance because that person will have sensitive information access? And what will you have in place if information gets stolen? You are putting a disadvantaged and highly at risk community at an even higher risk. 
you won’t deter us from being PCAs and EORs. You’ll be clogged in court for discriminatory work practices and this falls outside of Right to Work per multiple attorneys. Emails are sent. State reps are on our side. The DOD will start to get involved when military families show the discriminatory practices against them due to not having anyone to be EOR. Single parents will be pouring emails to state reps. 
Allow one parent to be an EOR. Keep what we already have in place. We have enough oversight with doctors, therapists and the SF that come into our homes on an almost daily basis. We don’t need someone else in our lives who have never walked in our shoes telling us we may be purposely hindering our children from growth and development. We WISH that were the case so our children could go on to live normal lives, but many of us will raise our children until we die. And then we have to worry about the state providing any care ag all, because we all know how that goes.

The updates are definitely going in the right direction. I’m worried about the EOR not being able to be a live-in parent. We are a military family and don’t know many people. Even if we did you want us to in-trust someone with our child’s and ours personal information? EOR is an unpaid position so, it being a parent makes sense. Please don’t take this away and make it harder for parents to be a paid caregiver. We already have plenty of oversight between our child’s case manger for our MCO, SF, therapist and physicians. Not to mention if your child goes to school. Please lesson the stress on our families and not add to it. 

This definitely is a step in the right direction though and I appreciate it. 

While I agree things are moving in the correct direction there still seems to be a hardship on parents that need help in maintaining their underage child in the home where they are safe and loved. My daughter is 6 years old. She is non verbal, blind, unable to even lift her arms or legs, diaper dependent and required frequent enamas. She had a serious seizure disorder that is not completely controlled even with the use of several controlled medications. She is tube fed dependent but in an effort to control seizures she has to have food blended instead of formula to keep as much sugar and carbs out of her diet as possible. Isabella requires oxygen and a heart monitor anytime she sleeps due to heart failure in December. As far as hiring someone to care for her I can’t even get family to watch her because of her high needs and risks much less someone willing to work with her for minimal pay and no benefits. Weekly we have no less then 2 appointments and all doctor appointments are 2 hours one way from our home. By adding more regulations then are currently in place only adds more stress to a already stressful situation. I am confused about the need of a RN to handle all medical things outside of personal care. What parent hires a nurse to provide medication, feeding, and monitoring? I am not against having a nurse as over sight as we kept the health department nurse for as long as we were able. I am just making it known that I feel parents with medically fragile children need less stress and more help and the current plan proposed is the opposite. 

Medicaid waivers are essentially a parent waving the rights to nursing home care, to provide such care in our own homes. This already provides a significant discount for the state. The definition, and what we have agreed to in waiving said rights, are not compatible with the regulations you are proposing. Many of these children require round the specialized care. Care that cannot be found at $12-16 dollars an hour. People can work at Aldi for $18 an hour and not have any of the extreme demands placed on them that are children require. Allowing a parent to provide paid caregiver services is a compromise in the agreement we have mad. If you are not able to raise the wage to match the demand for specialized care then you will have to pay the parents to do it themselves. Someone has to. These children aren’t going away. 

We are out here trying so hard to take care of our loved ones.  we are trying to avoid putting them in a center.  That is the whole point of HCBS. And now you are trying to make it harder on us with the hour limit and the EOR restrictions. Why do you keep doing this to us? 

While it is understandable some adjustments may be needed, the proposed changes are going to far. Who are they being seen to actually benefit?  The proposed new complexities and regulations will be exhausting and overwhelming for many parents/guardians.   

I am the mom to a wonderful, compassionate, brilliant young 23 son - he is also a nonspeaking autistic epileptic who - to his own admission - needs 24 oversight/attendant care for his OWN PERSONAL SAFETY.  Allowing a family member to be his attendant in the night time gives the rest of the family some sense of normalness, which is hard enough to do for so many reasons when there is a beloved and disabled family member. 

The proposed revisions are unnecessarily complex, limiting for families and would be exhausting to implement.   

Having to document ALL actions taken by an attendant when with a client is EXCESSIVE OVERSIGHT and micromanaging the clients and their families.  Doing so implies that things go on with members of this community "exactly as planned" which is contradictory to the actual and true nature of things for many within it.  Such mandatory documentation would  also take important interactive time from truly working with/being with the client due to needed to complete proposed tedious record keeping and input.  

A Family Member should be able to be the EOR. They are the ones closest to what is really going on and ready and willing to take on the task.  Is the state going to PAY the suggested non-family EOR?!?! We have a hard enough time finding qualified workers that we do pay (by the way with a salary that is really about HALF that of MD!?!).  How would we possibly find a VOLUNTEER to be our EOR?!?!? Simply put - that's preposterous!  

COME ON VA  - WE CAN DO BETTER!!!

Will you please just allow us to take care of our loved ones like we have for years without all the useless regulation. The 40 hour limit and non relative EOR just serves to make it harder on us to provide the complex services our loved ones need. We already have difficulty finding others to do it or trusting others to do it because of abuse. 

I am writing to you today as a concerned parent and advocate for families with disabled children. I would like to draw your attention to a critical issue that affects our community and implores your support in enacting meaningful policy changes.

As you may be aware, families like mine face immense challenges in finding and hiring competent personal care attendants to care for our disabled children who require complex medical care. The current situation is deeply concerning, as we struggle to secure the necessary support at a rate of less than $12 per hour. Meanwhile, fast-food jobs and other unskilled positions often offer higher wages, creating an unfortunate disparity that undermines the well-being of our children who deserve better.

It is crucial to recognize that parents are uniquely positioned to assume the personal care attendant role. We possess an intimate understanding of our children's needs, routines, and medical conditions. By allowing us to provide the care ourselves, we can ensure the highest level of quality and continuity of care, which is of utmost importance for our vulnerable children. This approach not only promotes their well-being but also does not incur any additional costs to the system.

The current requirement mandating an unpaid non-family member as the employee of record is both unnecessary and unduly burdensome for families already grappling with the daily demands of caring for a disabled child. It limits our ability to provide the best care possible and forces us to navigate complex administrative processes while dealing with the emotional and physical challenges that come with raising a child with special needs.

Therefore, I respectfully request that you consider two possible solutions: either simplify the process for parents to assume the role of personal care attendants, or significantly increase the compensation for attendants to a level that attracts competent professionals. By adopting either of these approaches, we can ensure that families have access to the support services their children are entitled to, without compromising their well-being or adding unnecessary stress to their lives.

It is my firm belief that by addressing this issue, we can make a tangible difference in the lives of countless families and their disabled children. I urge you to champion this cause, advocate for our rights, and work towards a policy change that reflects the needs and realities of families in Virginia.

Thank you for your attention to this matter. 

I live 20 miles from town. Any town.  My closest family is 72 miles away. I have been EOR since my children where able to recieve hours.  For 2 years I was not able to find anyone willing to help my oldest child. Now he is 18. Which helps because his father, who does not live with us can do his hours with no complaints.  But I have 1 child that is 14. She is non verbal, in a wheelchair. Tube fed, needs to be changed, and positioned over and over. She has had 3 strokes. For her finding care has been hard. Her sister does 40 hours, but there is still respite, and the other 40. She needs and requires 24 hr a day care. She has seizures also. So explain to me who would be willing to work for a child with high demands for less than what they can make at cookout, delivering food, and other things.  NO ONE.  Putting more limits on us,  making it so I can not be the EOR if her father works, (even thou he doesn't live with us, he is just a parent), making more work by listing everything we do in a shift, because , a parent would have to do up and beyond the normal,  Having to put hours nto a already broken system.  This list goes on. 

We demand that a parent be able to work, that the other parent be able to be the EOR, that there be no more paperwork we have to fill out. At what point is it about the care of our children?  I, has a parent already covered the other 88+ hours a week. For one child, and 126 for the other.. As a special needs parent there is already less sleep, less everything. Our care is already extraordinary. Please change this. Hear our plea, our needs. Thank you for your time. 

Hey! 

If LRI can’t be the EOR if the other LRI is the paid caregiver who will it be? The State can’t surely expect someone to be the EOR without compensation if they have no direct ties to the individual to whom services are rendered can they??? Also if the recipient of services rendered by Paid LRI is approved for more than 40 hrs because CURRENT EOR is working more hours why would that pay not be available to the Paid LRI. What is the reason for the State to limit only their hours and not someone isn’t a LRI???

Redirect funds to pay CD in-home attendants a living wage. Collect data that’s currently unavailable to count Consumers. Use that data to end inequitable attendant pay rates in the 5 care settings. I’m not here for Providers to profit from, my care is worth a living wage. Collect data on Consumers so payment can be stopped to the Provider for that one Consumer during Service Authorization pend. Do not stop payment to attendants during a Service Authorization pend. #EndInstitutionalBias 

As a single mom of an intellectually disabled child I have spent the last decade of my life dedicated to providing my child with the services and supports he will need in hopes he will one day be a productive member of society, rather than a drain on the taxpayer's dime. I have had to make the choice between sustaining my family and providing this support. Why should a parent EVER have to make that choice? With all of his required therapies and medical appointments we are subjected to over 20 hours per week of appointments.

As a William and Mary educated former professional, I was disenfranchised from the workforce BECAUSE I had to make this choice for my child. During COVID it was such a relief to not have to worry about trying to find someone to fulfill the role of PCA. When Governor Youngkin signed it into law it sounded too good to be true. Removing the consumer directed care option from parents and live-in caregivers is DETRIMENTAL to the health and welfare of these families. Restricting hours to 40 hours a week without respite or overtime, and forcing parents to work for agencies when you're only paying a pittance of $12.70/hour is going to decimate some of these families including ours.

Having researched surrounding states, I have found Maryland allows consumer directed care and Employers of Record are allowed to pay up to $65 per hour in certain cases where specialized care is needed. The EOR chooses the rate according to the needs of the individual. North Carolina pays up to $11.40 every 15 minutes or $45.60 per hour. West Virginia pays up to $21.80 per hour for home based services and even more for specialized care. What law and policy makers fail to realize is Virginia's pay rate for personal care attendants is dismal and completely tone deaf at best. In today's economy how is one supposed to survive on such a low hourly wage? Yet you policy makers wonder why it is so difficult for us to find QUALITY CARE for our loved ones. 

My child is non-verbal. He cannot express to me, much less articulate a chain of events occurring in a traumatic incident. I do not TRUST anyone from outside my home to provide the level of care I can as his parent. Yet I am expected to, and then I am expected to hire someone at the pittance you all call a "pay rate" at $12.70 per hour to provide quality care. Caregivers at this level ask for $18-22 per hour and for those of us receiving this care, to supplement your pittance would have us convicted of Medicaid fraud. 

Circling back to the beginning of my comment, with therapies and appointments each week totaling an excess of 20 hours per week, when exactly am I supposed to work? What professional level job is going to hire someone at a livable wage who needs to take that much time out of the week to attend these appointments? Personally, I've spent the last decade trying to figure this puzzle out. I've tried finding remote work to find most are scams. I've tried the entrepreneurial route six ways to Sunday, but legitimate opportunities require CAPITAL - the kind of capital someone living on this type of assistance can only dream of. 

Finding someone to accept this wage was next to impossible.  Caregivers at this level need to eat too, they also have rent and bills to be paid. Virginia's PCA pay rate is so low it equates to "supplemental" income at best - he kind of income you'd make at a part-time/second job. Yet you law and policy makers expect us to PROVE we've attempted to find quality care. Do you people expect us to also TRUST an individual making this pittance of a wage to attend those appointments and therapies and accurately disseminate information learned to us? Or are we supposed to again trust them to make medical decisions for us too?  In order for us to be "approved" to care for our family members under this waiver, you expect us to provide you with this PROOF we can't hire someone qualified. And THEN, you want to cripple us further by forcing us to move to agency directed care where we will have to be TRAINED to do the job we already do EVERY SINGLE DAY OF OUR LIVES. In addition, these attendants wouldn't even be paid for the time SPENT at these appointments due to the fact the client is considered under the doctor's/provider's care from the moment they walk into the office until the moment they leave. It is not uncommon for these appointments to last 1 to 2 hours or more. 

We are the MOST vulnerable population in society and you law and policy makers treat us as if we are the dregs of society - the bottom feeders. We DESERVE to not have to worry about how we're going to work to sustain our family members AND provide all this care to our loved ones simultaneously. Your demand for "oversight" is nothing but smoke and mirrors to take AWAY funding from these vulnerable families and put that money in the pockets of corporations. The oversight is already there. Every month we meet with our service facilitators to confirm we are conducting ourselves properly. Every quarter we are meeting with our care coordinators who determine our eligibility status. Stop treating us like we're trying to commit welfare fraud and try giving us back some of our dignity. I think I speak for most recipients of this waiver. We are simply trying to survive.

Hampton Roads is the largest military population in the world, holds the most military bases in one concentrated area in the world, and is a Navy EFMP Category 5 Stabilization Region. 
These are families who are already vulnerable. They are thousands of miles away from any friends and family. But you expect them to just Willy nilly hand out the UNPAID title of EOR to some random individual they don’t know so they can still provide PCA services to their children? That’s discriminatory and the DOD will be receiving multiple emails about this. Military families are already at an extreme disadvantage. We have insurance that doesn’t properly cover our children, so we are urged by Fleet and Family Services to seek Medicaid waivers. Many spouses are unable to work due to their children’s therapy schedules, being sent home irregularly from school due to needs and behaviors. These waivers and being PCA are how their children are getting their needs met. We can’t even get military respite providers because there are none. So how do you expect us to hire someone to do it when THE MILITARY CANT. Child Care Aware, the Navy and Air Force’s respite program here, pays $25 an hour. AND THEY CANT FIND PROVIDERS. So how do you expect us to stop being PCA, become the EOR otherwise we can’t get care for our kids, AND give someone WAY LESS than what military respite pays them? 

Looks like we are we are moving in the right direction with the Parents Paid Caregivers under Consumer Directed. 

I do have some concerns that I would like to express. I have two children on the DD Waiver I am the EOR and have been since 2012. It has been nearly impossible to hire outside help due to pay, diagnosis’s, behaviors, daily living and etc. When Appendix K was put into place in 2020 my husband became a Caregiver.  Which has helped out tremendously. Now with the new stipulations being put into place for Parents Paid Caregivers under CD this puts constraints on so many families.

• 40 hr. a week max cap of hours that they can work to provide care. Again it is really hard to find care for our children and we are usually have more hours budgeted. 
• Having the other LRI being the parent or step parent. Some of us don’t have people we can trust to take on that responsibility or no one in a 50 mile radius.  Finding someone that would take on that UNPAID role. Be available for quarterly meetings. Looking for outside help and interview prospects to fit your children’s needs and disabilities. 

Please consider the above items. These will affect the families tremendously that need this to keep their child/children safe in their home environment. Look how much more expensive it is for group home or institution placement. 

Respectfully,

Melody Bell

I am Parent that is a Caregiver to my 2 Children that are on the DD Waiver. They have multiple disabilities, need 100 % daily living care, aggressive and a lot more. My wife who is the Employer of Record has tried over the years to hire people and it hasn’t worked because of pay, no health benefits or the extent of responsibilities. My children could be criminally charged for their aggressiveness. Which I wouldn’t want their actions to happen on anyone on the outside. 

Having the Parent Paid Caregiver on the CD waiver having the stipulations might make my family have to take other actions that we would never in a million years would think about and would cost you tons more money. 

Please reevaluate these two items that you put into place when redoing the Parents Paid Caregivers CD stipulations.

• 40 hr. a week max cap of hours that they can work to provide care. Again it is really hard to find care for our children and we are usually have more hours budgeted. 
• Having the other LRI being the parent or step parent. Some of us don’t have people we can trust to take on that responsibility or no one in a 50 mile radius.  Finding someone that would take on that UNPAID role. Be available for quarterly meetings. Looking for outside help and interview prospects to fit your children’s needs and disabilities. 

I appreciate you taking the time to read this and these considerations 

many of us have had to give up our careers to take care of our loved ones because no one else will and you want to limit us to 40 hours a week. The limit should be how many hours the waiver individual is approved for.  That is what is best for them!

As much as I appreciate allowing parents as caregivers for minor children, how am I supposed to find a non-relative EOR? If I am unable to find a paid caregiver for my son, how can I find an unpaid EOR? I understand wanting to have some sense of regulation over services but this does not address the larger issue of lack of services for individuals with extra needs. My son needs 24/7 supervision. He is an elopement risk, he can be aggressive, he doesn't understand dangerous situations. We struggle to use the bathroom with only one adult in the home because his behaviors escalate without eyes on him. I have tried finding caregivers for him but I have had multiple start and leave because of the level of supervision required for him. It only gets worse as he gets older, bigger, and stronger. Allowing us as parents as caregivers for him is a start but again how do I find someone unrelated to donate their time as EOR when I cat find someone to assist as a paid caregiver?

Why are these new stipulations being introduced to make our already difficult lives more difficult?!?  Most of us deal with issues with our children that already consume most of our daily time. Please help make it easier on us to continue to provide the best care for our children without all these rules and regulations that are causing more heart ache and creating more difficulty in caring for our children. 

Please change the MAX cap of 40 hours/week that parents are allowed to work to provide care for our children who are sometimes budgeted for more hours. The majority, if not all of us, will be unable to find paid caregivers for the remaining hours above 40 and even though we are given those hours for our children who need. These hours would essentially be unusable and it would be unfair.

Please continue to allow non-attendant parents are EORs. Many people do not have someone within a 50 mile radius to help with this unpaid responsibility and many will struggle to find someone who cares enough to do this job or do it responsibly. 

You are making things difficult us with the limit on hours and EOR requirement, but I have a feeling that is the point.  We are just trying to do what is best for our babies when no one else will. 

If you have ever had a person you had to care for, a child, a parent, you know it’s not always easy. There are lots of appointments, there are lots of forms to fill out, many things to prove. There are not enough resources for people with disabil. There are not enough living situations for them. Also you know in your heart that no one will live and care for your loved as much or as well as you do. We try hard to give our family member the best possible life and expose them to normal situations. 
so, why make it more difficult when most of us are just doing the best we can for our loved ones. 
No one loves your family member like you do, no one will be so conscientious about the care or what happens to them. And we are much less expensive to employ than a group home or other environment.

please look at the whole picture and consider the entire family.

Thank you

Please reconsider the 40 hour limit for parents.  We are trying to care for our children when others will not.  We have given up careers because we had to or because it was what we best for our children.  This enables families to lift themselves out of poverty. It’s hard to hold down a job when you cannot find care for your child because of the severity of the disability, or you are constantly having to leave work to put out fires related to the behaviors of the disability, attend appointments, etc. 

You want to limit parents to 40 hours max a week. If a child is approved for more hours a week, that means they need that many hours of services. Limiting parents is adverse to the best interest of the child if no other PCAs are available to take those hours and parents cannot work outside the house. I urge you to change your mind about this.

Please allow the other parent to be the EOR. There is already plenty of oversight. 

As a parent and being the EOR having ti try to find another EOR is nearly impossible when we don't have family close by. It's nearly impossible to find dependable worker's. It's a struggle as a parent now to find dependable worker's if we can, my spouse care for my one child as we can not find a reliable worker to care for his needs, and the cap on hours is ridiculous at 40 hrs if your even approved for 40. We are trying every which way possible to see that our children get the help they need and it's the small things that don't seem like much to yall that make a huge difference to us. 

Having to find a new eor put my child's information and attendants information at risk. As someone who is the eor and has been since children have started receiving services. I don't have family/friends close by and even if I did I would trust them with access to personal information regarding my children. It's a violation. 

Thinking families who have a child with needs that qualify them for a waiver will be able to find a non-relative, who lives within 50 miles, who you trust enough to handle sensitive data, who is willing to do this JOB (because it is A LOT OF WORK and requires regular meetings with a Service Facilitation Case Manager which require the EOR to be present) for FREE is completely asinine. 

Also - a 40 hour cap is completely un-realistic and will put undue financial, physical, and emotional strain on so many of these families who are barely surviving as is. Please reconsider this.

When the institution system was abolished in the 20th Century it was known then that the burden of helping those qualifying for these waivers would fall on families. Why must we be treated to such suspician and distrust when the only "crime" we have committed is to bring a new soul into the world that is special needs? To ban LRI's from being EORs when they are not also attendants is unpracticle. To then also stipulate a 50 mile radius for a new EOR and return LRI attendants to EV is nothing short of punitive. 40 hour max for CD LRI attendants is being kept why??? To save money, were the barbaric institutions cheaper...return to them instead if that's the case. Also, if the other LRI in a household is PCG and NOT an attendant why would thete be no respite? Lastly, how can IADL's possibly be eliminated for hour consideration when they are so vastly important to the care of special needs children and and are far in excess for what a typical child requires. My wife and I once had to move from Virginia to her third world country because our sons ABA was deemed educational not medical so insurance would not pay. If DMAS continues to treat my wife and I as potential criminals, we will leave again, taking with us our "needy" son and our VDOE teaching licenses we have used to educate thousands of Virginia's children in some of the poorest Title 1 schools in the Commonwealth.

This is a comment about an un-related EOR. We are a military family with no friends or family nearby. It is truly unsafe to depend on a stranger with our social security numbers as well as attending meetings unpaid. Will you be paying these EORs? What type of people will be in this position and how do we find them to hire? It is dangerous all around once people even realize this is a position they can fill with all of this personal identification.

I do appreciate the continued fight for parents as paid care givers however, I cannot seem to understand if a LRI cannot be an EOR with a live in parent attendant, who will do it? We have very limited family in this area and no one that would take on the task of EOR as it is unpaid and requires paperwork, time and effort. How can I leave the responsibility to hire care takers for my child to someone else? I do not understand the logic behind this as a lot of families do not have a “village” of people that would be willing to take in such tasks and responsibilities with no pay or obligation to them personally. I feel like this is in a round about way, making it impossible yet again for parents to be paid attendants. We can’t even find someone willing to care for our disabled family member for the low pay and benefits now, and we are supposed to find someone for an unpaid position? Truly unfathomable. I hope we are heard on this, like I suspected we had been heard about the issue regarding parents continuing on as paid attendants. 

Va you need to do better!!! This whole fight of parents not being able to be a paid care provider for there minor children is absurd now a non family member as an EOR. We can’t find outside care attendants how are we supposed to find an EOR that is unpaid. Your restrictions and complete lack of understanding of our special children and the care they need is unbelievable. Most of these people need 24 hour care to begin with and you put a cap on if 40 hours a week also. Are you trying to push everyone into putting there children and loved ones in homes that don’t have enough care either? Do better allow us to take care of our families appropriately. Many states don’t have half of these requirements and restrictions. As soon as we can get out of va we will because of this insanity and how much of a fight it is just to be able to take care of our families!

I appreciate the fight to try to keep parents and spouses as paid attendants. Caring for my child is already stressful enough and something in which I had to leave my career to be able to do. I know many special needs parents/caregivers can relate. We live in a very rural county and have very little family support. Those that we do trust, simply are not qualified enough to care for my medically complex son. 

My huge concern is over the amendment so that another LRI can not be the EOR. I can't find a trustworthy family member or friend to come in and be a paid attendant, I'm not sure exactly how I am going to ask someone then to be an Non-paid EOR. Not to mention the breach of privacy that my child will now be subjected to, with having an EOR that is not a parent having access to all their very private information. Many parents are single parents, are in the military, or simply do not have the family support like we all dreamed we could have. And while I fully appreciate wanting to make sure that individuals are receiving the care they need and deserve, I do also want to mention that we are already subjected to so much oversight with service facilitators, our insurance care coordinators, doctors, therapists, school, and even more, I'm not sure what more you expect to find with having someone who is not LRI be the EOR. I hope that you consider editing the language here to allow for one LRI to be the EOR while another LRI is the paid attendant. Thank you. 

I am extremely concerned about the privacy of my children's health information (HIPPA) as well as their SSN and insurance information.  I do not have anyone I would even consider asking to be the EOR that I would trust with that information,  especially to be unpaid for the enormous amount of work that comes with it.  My husband and I adopted three children, all with significant special needs. There are multiple meetings with service facilitators,  care coordinators, multiple doctors, therapists, case managers,  school personnel (IEP meetings and more). We are more than overseen with professionals.  I have minimally 3-4 appointments/meetings weekly. My children all have trust issues and severe trauma. Finding attendants for them is extremely difficult, and lately,  impossible. Finding NON-relative people I would trust as an EOR...impossible.  Please reconsider the stipulations for EORs and the limitations on hours. Appointments alone can total close to 40 hours, which doesn't include any personal care.  I have had to leave my career to take care of my children since covid. Also,  since covid,  attendants are practically non-existent. The hourly rate is a joke. No one wants to work this hard for less than they can make at a fast food restaurant. The hourly cap provides hardships for parents who can not work in order to properly take care of their children.  We love and care for our children deeply,  but bills still have to be paid. Please reconsider these new guidelines. 

Please continue to allow parents to log time through the web portal. We are on at all times and not going to a job and getting off. Our days are continual from the time our child wakes up until they go to sleep, and having to stop to login and logout is impractical. In addition, our EOR doesn’t live with us as a single parent family to sign off. Parents as caregivers simply do not operate the same as non-live-in attendants. 

Please do not place added oversight with these proposed regulations for parents as attendants. Please keep the Consumer Directed model as a standard for parents. There is simply no monetary reason to place an agency into the mix. The extra money to be made by agencies should go to attendants. Simply supporting the special services our kids need provides the “guardrails” you say we need. We are accountable to doctors, therapists, CSB, SF, teachers, schools, and all the in-between providers of various services. My paperwork alone regarding intakes, documentation requests, and notes to providers is a second job. Families of special needs children are invaded with oversight as a byproduct of the kind of care our children need. We do not need more oversight or agencies training us on how to provide care for our children. It doesn’t make financial sense for the state to pay agencies for this particular workforce who are already most equipped and accountable. 

We have so many guardrails in place that I often feel our children are in child protective services instead of Medicaid. We have a county caseworker and a private caseworker both seeing our children in person and on a regular basis. Reviewing goals constantly. Evaluations every couple years. When my husband passed away suddenly a few months ago, I spent the week after his death doing Medicaid paperwork and meetings. 2 of my 3 kids have special needs. My friends in Medicaid asked me how will you do Medicaid now that you’ve lost your only income from husband because the paperwork is a part time job. We have background checks as parents. Our aids have background checks. How many guardrails need to be in place? Multiple agencies discuss our hours on an ongoing basis. My kids need care every moment they are home from school including holidays weekends school days off. People don’t want to deal with children over 6 foot tall with behaviors and Diapers. I can’t even take 3 of them out alone without an aid so I’m still struggling in my free time to find aids. I can’t live off 40 hours. I don’t know how you think with kids on multiple school schedules and closures, we can work. Just because one leaves at 7, 2 go at 830, one comes homes at 2, two come home at 330, our children often come home or are sick or we are in school meetings or at therapies. My friend is now my eor since my spouse died and it’s fine but you should consider doing a stipend. It’s work for eors. 40 hours is so far beneath what my kids require and it’s fine as a second income but my spouse died. Apparently this was all about saving money and not about the kids needs. This is why we didn’t want agency directed with hours caps and more paperwork. I’ve never seen so much paperwork and we are dealing with life threatening medical issues and school ieps and behaviors. If I was wealthy, I would have left this program but it is all my kids will have in the future.