Combining the assistive technology and environmental modifications cap to $10,000 is important because it will allow the waiver recipient to purchase more assistive technology and home modifications.  Disregarding Social Security Disability Insurance when determining eligibility for the Developmental Disabilities Waiver would allow more people to be eligible for waiver services because the limit of income people can have is sometimes insufficient.  

Retaining waiver slots for up to one year is important because it will allow the participant to keep their waiver slot while finding more providers that would accept payment from the waiver funding stream.

Please consider moving the due date for quarterly reports back to the 15th of the month for waiver providers. There are many months with holidays, and weekends which reduce the 10 days to 5 or 6 in reality. This makes it extremely difficult for everyone to meet the deadline. Extending the deadline to the 15th would enable providers to accommodate for programs that do not work on weekends, confront holidays, and may have staffing shortages (FMLA, vacancies, and or days scheduled out during that limited time period). 

Consumer directed services are probably the most misused, least monitored, and most misunderstood service (s) available.  As a provider of agency directed services, I can tell you there is absolutely no comparison.  I receive comments constantly from families who are assigned a service facilitator to obtain CD services and are left to navigate a system that is impossible at best to navigate, on their own.  There is no follow up, no monitoring, and most of the time there is no contact to be made.  Educational requirements add legitimacy to a service.  If you desire to do away with the requirements, why not just allocate a dollar amount to those who are eligible and desire CD services and not make them jump thru every hoop possible to get authorized and set up with CD services.    I can't speak for all of the state but I can tell you the individuals/families I know who get CD services are very disappointed.  Nobody is held accountable and individuals/families are left out in limbo.  If you truly want to improve the service, hold providers accountable by expecting more, and paying more.    If you want to throw money at a problem, drop the requirements.  If you really want to do some thing to help people, give them a person who can help navigate the system with them, provide oversight, but more importantly, hold them accountable.

There should be no changes to this unless it is to better help the client receiving the waiver. We trust those LRIs to care for us and in my case everyone I have spoken to in moms in motion and medicaid has said what a good job he is going. 

It is extremely concerning that the removal of educational requirements is being considered for service facilitators. Service facilitation is already a nightmare of a service for clients, their families, and community services board support coordinators. There is already an extreme lack of oversight for service facilitators. Support Coordinators have constant issues with service facilitators not being responsive to problems and concerns. The Service facilitators often refuse to help problem-solve issues that they should be addressing. They write quarterly reports that consist of inaccurate information, and that are typically copied and pasted from previous reports. They don't provide any ounce of oversight to the services being carried out by the paid attendants. They tend to refuse to assist clients with the finding and hiring of attendants, even with things as simple as the enrollment paperwork for the attendants. They put everything on the clients, their families, and/or the CSB support coordinators. Many support coordinators are very confused as to what they actually are responsible for, due to the long list of things that they refuse to do and won't engage in. I am a support coordinator for a CSB. Every single client that we have receiving services through a service facilitator says that they have not seen anyone from their service facilitation agency in months, and in some cases, over a year. Meanwhile, the SF agency has an active service authorization and is billing for the client as far as we are aware. When authorizations are pended, SF agencies don't tend to know what to do to correct the pends. This often results in a lapse in services for the client. We have support coordinators who have never received quarterly reports from SF agencies for clients that have been in services with the SF's for years. There is no one holding them responsible for submitting quarterly reports to the CSB support coordinators. Support Coordinators at the CSB's are given all of the responsibility for overseeing the SF's, but there is no power given to the SC's to do anything about the constant issues. The only glimmer of hope that SC's have when it comes to SF agencies is that they are being held to at least some sort of standard at the state and governmental levels. By taking away things like educational requirements, you're eliminating one of the only parameters that it appears the SF agencies have. This will continue to cause the services that are provided by SF agencies to become unusable and inoperable. The disabled population in Virginia deserves better quality services offered by SF agencies. I highly encourage you to refrain from taking this action and instead, reach out to CSB's and request feedback from their support coordinators first. The SC's are the "boots on the ground" that have the direct experience and knowledge of how the SF agencies aren't sufficient and why. I can promise you that you will receive ample justification as to why SF agencies need more oversight and parameters, not less. 

I do not agree with removing the educational requirements for SF. This is a service provided to support families with navigating their services and ISPs. There is a certain level of foundational knowledge of Human Services that should remain in place to support the integrity of the program. 

My recommendation would be to provide more training on how to conduct facilitation services so that other interested organizations and professionals can successfully provide the service.

While I do believe that adding nursing facilities and the Program for the All-Inclusive Care for the Elderly (PACE) providers to the approved professionals to screen individuals in the community for waiver enrollment (CCC+), I also believe there should be minimum guidelines established for what professionals can provide this service so that it is not limited to pre-selected organizations. The goal should be to make screening services more accessible across the state.

I think combining AT and EM funds to allow for $10,000/year to be used towards these items is appropriate and beneficial to individuals and families. Many individuals live in group home or sponsored residential settings where EM is not available to them under the waiver. This change would allow them to have more funding towards the cost of needed AT items. Also, with the cost of everything going up, this allows families to receive needed items/modifications for their loved ones without having to cover the expense over $5,000 that they are currently responsible for.

Currently those new to receiving waiver services have 150 days to connect to and start a waiver service. This may seem like a sufficient amount of time, but in reality if you are truly allowing folks to explore the options available to them, schedule tours, plan meetings, etc., 150 days is not always enough time. I recently had someone lose their Community Living waiver because a service had not been started within the 150 day timeframe. Allowing a year to start services is very much needed, especially with everyone on priority 1 being funded a slot over the next two years. The influx of those new to waiver will impact our providers and services will be limited until new providers can be added or current providers can expand services. I expect there will be waiting lists for services so allowing a year to start the waiver should help in ensuring folks get connected to the services they want and need while also allowing providers enough time to expand, hire more staff, etc.

I have two adult children on the spectrum of autism.

My son is low functioning and needs round the clock care. My daughter is high functioning, went to college but has social issues and afraid to drive which makes it difficult for her to get a job outside the home. She has been a constant companion to her brother. Truly an asset to our home. We could not function without her assistance. It takes a village so they say.

That being said we applied for a paid position with Youth To Wisdom and my daughter was told she did not qualify since she lives in the same home with her brother. For her to have residence outside the home, paying food and board makes no sense. We are only functioning because she lives in the home with us.

This system is flawed!!!!!

Bettie Farmer

I feel that Due date for quarterlies should be extended to the 15th of each month.  Weekends and Holidays interfere with days we are able to enter quarterlies.  Extending the due date would give relief and it would be less stressful, knowing you have a little more time to complete your quarterlies.

Thanks so much, 

Linda Asad

I’m in favor of combining the budget.

I strongly support combining the annual service limits for Assistive Technology and Electronic Home-Based Support into one annual $10,000 limit to be shared.  With the current amount being $5000 for each service, access to necessary support is limited and restricted.  Merging these service limits aligns with the broader goals of person-centered care by empowering individuals to make informed decisions about their support services and addresses the diverse and evolving needs of individuals who rely on assistive technology and EHBS.  

Combining the budget has obvious crucial benefits to ensure equitable allocation of resources. Services need to be streamlined. Other states are far beyond in providing a hefty budget for comparable EHBS and are seeing a significant outcome in the lives of those who use them. 

Please proceed with combining the AT and EHBS waiver budgets because Virginians on the I/DD waiver deserve a choice on how to use these critical funds according to their needs and personal goals toward greater autonomy/independence.  thank you.

I fully support the disregard of SSDI when determining eligibility for the three Developmental Disability Waivers.  The improved financials are the preferred SSDI (funded by payroll taxes) vs. SSI (funded by US Treasury) for payout purposes and the increase in dollars to the state since disabled individuals will remain on the waiver and Patient Pay is based on SSDI.

Please do not do this. People struggle as it is with case manager quality. Search Facebook for groups on Virginia Medicaid Waivers. The difficulty families face in navigating DMAS' ID/DD waiver system is already obscene. Allowing people without even a minimum degree requirement to be the gatekeepers and coordinators for people's very lives may increase the quantity of staff available but will absolutely decrease their quality.

So, mental health case managers and targeted case managers and social workers all have educational requirements but DMAS wants to remove them for the ID/DD folks - people who very often have challenges advocating for themselves?

There is no functional human rights protection in the ID/DD waiver system. Virginia is allowed to claim that there are no qualified organizations to provide case management support to this population - even though there would be if they didn't eliminate competition by claiming that - thus denying Virginians the protections from conflict of interest that almost every other state in America abides by under CMS.

Providers pay lip service to human rights as it is, without consequences. There is no vigorous education, no ombudsmen. Individuals don't know their rights. HCBS Settings Rules violations abound. Kitchens are "closed", bedtimes are instituted, "choice" is orchestrated.

And DMAS thinks the answer is to lower/remove educational requirements for case managers who are already allowed to operate under conflicts of interest with minimal human rights oversight. DMAS never thinks the answer is an evaluation of their own system-centered organization. They never look to themselves. They are a user unfriendly agency with a neverending administrative burden that fails to accomplish its ultimate goal of providing person-centered supports to one of Virginia's most vulnerable population groups and their strained circles of support.

DMAS has created an inordinately complicated, even byzantine system of rules and paperwork. Please do not let them lower the educational requirements. If anything they should be tightening requirements and fostering competition.

1. I fully support combining the annual service limits for Assistive Tech and EHBS. This would give individuals who only need Assistive Tech, or EHBS, more funds to utilize. The products that are typically needed through these services can be very expensive. At times, $5,000 isn't enough to cover the cost. 
2. Allowing more time to enroll into a waiver is crucial. I support this change. With the shortage of providers and services in rural areas, it is almost impossible to get someone enrolled into waiver services within the current expected timeframe. We have individuals who have been forced to lose their waiver slot, at no fault of their own because of this. 
3. I support the amendment to disregard the SSDI benefits above the maximum Social Security Insurance benefit limit. People who receive SSI and SSDI rarely have enough funds or income to cover their monthly expenses, much less their personal needs as well. They should not be penalized for having a disability when trying to access other benefits and resources. 
4. I do NOT support the removal of education requirements for service facilitation providers. Service facilitation is an extremely unreliable service. The SF companies never want to fulfill their responsibilities, and everything tends to fall into the laps of the CSB support coordinators and the family members of the client. At my agency, I work with SF agencies all across the state of VA. None of them seem to be able to produce their required quarterly reports, ever. Most families say that they never see or hear from their SF agency or assigned worker. Most workers at the SF agencies don't seem to understand crucial concepts and processes that they should understand in order to provide quality services. I understand that SF agencies are understaffed and that they have a lot of turnover, however, this is one situation where risking the quality of care is not worth the risk. If anything, this is the one service that desperately needs more oversight and more requirements, not less. 

I support combining the AT and EHBS waiver budgets.

I support combining the AT and EHBS waiver budgets.

It would be one thing to decrease the educational requirement if there were going to be an increase in oversight, but it doesn't appear that this is the case.  Therefore, I am against reducing the educational requirement for service facilitators.   Service Facilitation is one of the most utilized, but least monitored services that I, as a support coordinator, work with.  I have families that haven't had a SF meet with them in almost two years due to "understaffing" or "staff turnover."  When families run into issues/concerns related to CDCN, I can't help them with that, because that's not my role.  I then have to resort to asking families to keep reaching out over and over again as if they're get a different response.  SF services have gotten so bad over the last year that I have had families request other providers and services because they're tired of the continued fight for help and answers that should be provided by service facilitators.  Service facilitators should have reasonable background, understanding and education to fulfill their roles are service facilitators.

Parents who know they're child the most should be first in line to be paid to take care of the child. The safest environment and the healthiest environment for most children with special needs are with the parent of the child. Our child has to be cathed every 3 hours and has a bowel program everyday. It makes sense for the parent to be the person to meet those needs. If someone is going to be paid it should be the parent or parents who safely meet the needs of the children everyday. More often than not the child responds and is more comfortable with the parent or parents of the child. Providing help to the parents of special needs children would be what is best for the parents and child involved. Outside of the home should be the 2nd option not the first.

The rules for LRI caregivers passed by Virginia's General Assembly and signed by Gov. Youngkin this past spring need to be implemented by DMAS as stated in the legislation. Parents should be the first choice in caring for medically complex or disabled children, not last resort. They have been specially trained in the care of their child and their specific needs. In addition, paying parents saves the state money as hourly pay rates are much lower then those charged by nursing agencies and home health companies. Parenting a medically complex, disabled child is hard enough as it is. Going forward, DMAS rules should always be made in a way that respects the work parents are doing to keep their children at home and healthy, which ultimately allows these special children to thrive, not in an adversarial way that increases the burden on families. 

I support combining the AT and EHBS waiver budgets

I agree that the in-home caregiver should have a chance to be compensated. Due to the nature of caregiving, it makes it hard to get or keep a job. Also, it is a lower rate of pay so the state would save money. 

I do not agree that the Facilitators educational requirements be taken away. My experience with most private facilitator is that they are not helpful, and people hardly hear from them.

We recently switched from agency to consumer directed due to the low quality of care, intermittent care, frequent callouts, high turnover, unqualified care. My RN wife jumped through hoops to become the paid attendant. She was getting paid $38 an hour to now making the attendant pay but she was missing work due to aforementioned issues. Because I am in the military it is near impossible to bring family with us on moves, so the hoops for her to take a drastic pay cut in order to have consistent care for our child is ridiculous. It is mind blowing that if a cousin was here they could easily be hired to be the attendant, but a parent must be a last resort with OWD stating we’ve exhausted all other options  

There should be fewer requirements for a parent/PCG to be the paid attendant when it comes to medically complex or developmentally disabled cases. Most families affected by this scenario require one parent to stay at home and care for the child, or the parents must alter work hours so that one is always home. If Medicaid has determined my child needs an attendant, there should be no reason my wife cannot be that attendant. Or myself.

If most marriages end in divorce, and parents of children with complex medical problems have a higher rate, and many divorces are financially related, many of us don’t stand a chance if DMAS continues to make this harder on us.

I don't understand why they want to LOWER the education requirement for service facilitators.  Seriously? I hope anyone supporting this gets blessed with an uneducated case manager coordinating their life someday. More workers doesn't mean better workers. We should be increasing training and support not lowering education standards. 

Please combine the AT and EHBS budget.  Virginia is way behind and already has an extremely limited budget.

Parents are typically the only constant in their special need child’s life. The turnover rate for therapists, doctors, teachers, and the rest of the care team is through the roof. Allowing the parent to continue being the LRI for the child ensures the child receives care from the most knowledgeable individual. Training others to care for a non-verbal child is no easy task as one must learn nonverbal cues to meet the most basic of needs including feeding, toileting, amongst other wants and needs. On top of trying to find a qualified individual who is willing to be a caregiver parents are up against the fact that there are not an abundance of individuals willing or able. Retaining this individual for a length of time is another concern. Our children need a ton of accommodations from clothing to extra door locks which causes financial strain. Parents want to assure their children are safe and comfortable and the extra funds to care for our children allow us to do so.  

Whatever you do, don't fail to follow through on this long failed promise to Virginians with disabilities. Whatever you do, provide the support promised in the various bills. 

8/23/24

Department of Medical Assistance Services

ATTN:  Andrew Greer/Senior Policy Analyst – Office of Community Living

Suite 1300

600 East Broad Street

Richmond, VA 23219

RE: Proposed Changes to Medicaid Waivers

The disAbility Law Center of Virginia (dLCV) is Virginia’s designated protection and advocacy system. We advance the rights of Virginians with disabilities under several federally funded programs, including the Protection and Advocacy for Assistive Technology (PAAT) and Protection and Advocacy for Individuals with Developmental Disabilities (PADD) programs.

Thank you for this opportunity to comment on proposed changes to the FIS, CL, BI, and CCC + Medicaid Waivers. dLCV strongly supports the following proposed changes:

1. Combining the annual service limits for Assistive Technology and Electronic Home-Based Services into one annual $10,000 limit to be shared between the two services.

This change will allow greater flexibility for Waiver members who rely on Assistive Technology and Electronic Home-Based Services to live independently in the community. The current limits of $5000 per service are unduly restrictive and unnecessarily limit the usefulness of these services to many individuals. We are hopeful that after studying the financial impact of this change, the Department will further expand this flexibility by additionally combining the Environmental Modification service limit into this combined budget limit, allowing for a total of $15,000 limit shared between the three services. This would allow for an even more flexible and individually tailored approach supporting individuals with unique technological and environmental modification needs in the community.

2. Permit allowance for individuals offered a Developmental Disability Waiver slot to delay enrollment into the waiver for up to 1 year.

This change in policy is necessary to ensure that Waiver members do not unnecessarily lose their Waiver slot simply because of delays in their ability to access Waiver services that may be out of their control. As the Commonwealth expands the number of DD Waiver slots in the coming years, the provider network will need to expand available services in order to accommodate the influx of these newly enrolled Waiver members. We already hear from individuals and families who have difficulty accessing services in their communities, because of provider shortages. This amendment will allow some buffer time for individuals and the provider community to adapt and protect newly enrolled Waiver members from unnecessarily losing their long-awaited Wavier slots.

3. Disregard Social Security Disability Insurance (SSDI) benefits above the maximum Social Security Insurance (SSI) benefit limit as determined by the Social Security Administration for purposes of pre-eligibility treatment of income.

This crucial amendment will ensure that Virginians with developmental disabilities are not penalized simply because they are recipients of SSDI benefits. Medicaid Waiver long term services and supports are a crucial lifeline for these individuals, and this amendment will remove one more barrier to individuals to access this lifeline.

Sincerely,

Colleen Miller

Executive Director

Please consider each of the following concerns:

• DMAS/Therapeutic Consultation Discrepancies - We understand there may be one official way that each task should be done (According to the DMAS regulations or in the Therapeutic consultation guidelines documents), but support coordinators /DMAS/DBHDS representatives constantly give us conflicting information.

• 1. Support coordinators have told us that Interim Support Plans need to be done at the beginning of each authorization for all clients, others have said only for a new client, and others have said only at the beginning of an ISP period for a new or existing client.

• 2. We have been told for some clients that they want to review data/graphs for previous treatment periods, and other DBHDS have asked us to only show recommendations for the caregivers for the next period and no data.

• 3. We have been told that a full assessment/FBA is required at the start, and we have also been told that all we need at the start is to say “an FBA will be completed” within our interim plan, and not conduct one until later.

• 4. We often receive denials that our requested dates of service don’t line up with the individuals ISP date (that was written by another DMAS representative) – If these dates only align with the individuals plan, we understand that it is posted for us to see that date, however we are being requested to initiate services with clients sometimes approximately 4-6 weeks before  one of these dates, and it is not clinically appropriate to write a treatment plan and start services just for a  few weeks before having to pause and go through the process again. We understand this is likely how DMAS sets up the individuals benefits, however it would be helpful if our Treatment/Support Plan and services were separate and would initiate from the time we are approached by a family/support coordinator, and consistently are for 6 month periods as opposed to having to follow some other time line that does not match the client’s needs. 
  5. We have received feedback from two different support coordinators in which one said nothing is required for Discharge, and the other said “discharge summary/disposition Summary along with Final Quarterly Review for Behavior Consultation and any Consultant recommendations.” This is not consistent

6. We have had multiple clients to which family and DMAS support coordinator agreed on a goal of obtaining employment opportunities for the individual, EMPLOYMENT is even an option to select under “Life Skill Area,” however we also received a denial from one DBHDS stating a goal related to employment is “Not appropriate for this service.” Very conflicting!

7. TC Service Criteria ­ – It is quite limiting (regarding how many families can receive support in our community) that only BCBAs can directly provide the service. We understand that the nature of Therapeutic Consultation Services is for caregiver training, however the client’s name (and not the Caregiver) is listed as the direct client, with goals related to “Life areas” of improvement for client, are interpreted by providers as being able to provide direct support WITH the client instead of only just the  caregiver, so a lower-level certification (E.g. a certified RBT) could also be effective in this role with direct support from the BCBA regarding all interventions and recommendations, and allow more clients to access this service.

No one should be kicked off waiver and lose housing, day program, insurance, attendant etc because their parent passed away, both parents passed away etc. This is a reality for many especially disabled siblings in a family survivor pool. This is the time they need the services the most. 

LRI changes were supposed to be implemented in July so single parents with more than 1 recipient on waiver could bill 40 hours per child. I’ve been holding on since March and it’s a huge financial burden to only be able to bill 40 hours for both children. It was supposed to be 4 unpaid months but now there is no implementation timeline being shared by DMAS. I’ve heard it could be 10 months but who knows? My children need support and I cannot find aids to fill their service plan hours so I am the best fit.

As a provider of multiple Developmental Disability (DD) Waiver services, SOAR365 agrees with most changes proposed. Those that update language and increase consistency are positive changes without negative impact to individuals served or providers. Allowing individuals to delay enrollment for a longer period promotes choice of provider and recognizes that a lack of available providers may be a factor in ceding a waiver slot by a person in need of and willing to engage in services. While Virginia’s intention of adding a significant number of DD Waiver slots allows for the possibility that more individuals will be able to access service, even a phase in approach may not adequately consider the number of Support Coordinators, providers and the ability for both to assess and complete the intake process for new participants. An influx of eligible individuals applying to services may not be able to move through the process within the current time limit. Disregarding Social Security Disability Insurance benefits above the maximum Social Security Insurance benefits may help more individuals choose to participate in Supported Employment services.

As one of the few providers of respite services in Virginia licensed by DBHDS (approximately 20 only six of which provide services for youth), SOAR365 does not support amending the rules to disallow receipt of respite services to a paid Legally Responsible Individual (LRI). By definition, an LRI providing personal assistance is doing so under circumstances that are, “extraordinary in nature, which is above and beyond what they are obligated to provide.” This change will deprive families of necessary, intermittent relief from the extensive burden and responsibility of being a caregiver to individual with high needs. Paying LRIs to provide support to loved ones could appropriately be viewed as a means of financially compensating a family system unable to benefit from having a member of the family obtain outside employment. Compensation for up to 40 hours per week of work in no way diminishes the degree of effort needed to meet the needs of the individual with a disability. If considered as a form of employment, it is standard for employees to receive some type of time off. If viewed as a family system, parents/caregivers need to be afforded opportunities to engage in normative activities such as “date night,” “weekend getaways,” or other brief periods of respite from caregiving in the same way as families caring for loved ones without extraordinary needs. Such breaks provide opportunities to decompress, decrease burnout and depression, and decrease the risk of abuse or neglect for the individual. These families are generally less able to take advantage of natural or community supports, such as family members and babysitters, making professionals resources an important support.

Plans to increase the number of waiver slots is intended to address the Priority One waitlist – meaning those in the greatest need of services, which implies these individuals require the highest levels of support. Therefore, Virginia would benefit from looking at ways to increase the availability of respite services, not decrease them. Improving reimbursement rates, and eliminating administrative burdens (e.g., removing the requirement for quarterly progress reviews for this intermittent service not intended to serve a rehabilitative or habilitative function) are ways to facilitate this, as is allowing all those in need to access the service.

Staffing anywhere is hard but the degree requirement leaves families unserved especially in hard to hire areas. Compassion and experience with the special needs community is all that is needed to be an SF. Waiver recipients should not suffer because of a degree requirement that is next to impossible to meet in certain parts of the state. 

The first draft of LRI guardrails did nothing but create chaos and unattainable requirements for families. Let’s make sure the next draft considers those families that are struggling to provide care to individuals who are eligible and in dire need of that care. Services should be dependent upon the client and not dependent on the person providing the care for the client. Focus on limitations that allow for flexibility’s within reason. Advertising isn’t an option for some families because of behaviors and fear of liability. Finding people because of the payrate is next to impossible. Please consider these things when determining what the way ahead is going to be. Do not put the recipients of this state program over barrels and force them to bend over backwards when they are just asking for the help they need and deserve given the situation they find themselves in. Limiting who can be the EOR and putting hurdles in the way only leads to complications for the people who need the services in order to be healthy and safe.

The LRI guardrails that were imemented caused a great deal of stress and worry for families that are already struggling to make it each day. I have not been able to find gainful employment until recently that would meet my son's needs for care. Allowing my husband and I to be caregivers for our son allowed us to ensure he received the care he needs and provide for our family. However, keeping us from using respite is a major hardship for us. We are unable to find a caregiver on a regular basis, hut removing the respite hours means that even if we have a caregiver occasionally or find a respite program we are unable to get the much needed break. My hope is that this will be reconsidered for all the exhausted caregivers of our profound need children. 

 
Parents who know they're child the most should be first in line to be paid to take care of the child. The safest environment and the healthiest environment for most children with special needs are with
the parent of the child. Our child has to be cathed every 3 hours and has a bowel program everyday. It makes sense for the parent to be the person to meet those needs. If someone is going to be paid it should be the parent or parents who safely meet the needs of the children everyday. More often than not the child responds and is more comfortable with the parent or parents of the child. Providing help to the parents of special needs children would be what is best for the parents and child involved. Outside of the home should be the 2nd option not the first cupped hours to 40 for parents is not good thing for us we can’t  find outside caregiver to give the same care like us and it hard to work outside while your special needs kids need help every single minute please let the parents work all the approval hours for their loved ones that make will be make a progress and be safe and make sure they have all what they need (doctors appointments therapist appointments and follow them at school 

Please help our children to get the best care by allowing parents to continue to be paid caregivers. Allow us to work the full approved hours, and to be able to use respite in order to rest. Our children are more comfortable with family members. It is traumatic and scarey for them when caretakers are changed often.  Thank you for your consideration and time that you put into helping us, the families, and most of all our very special children!

The compensation level is inadequate to recruit and retain caregivers capable of and willing to care for the special needs people on the waiver. The processes are also so slow that our current non-family caregiver who does the minority of our hours didn’t get consistently paid for months. No one compensated in the amount the waiver compensates can stay and get paid that inconsistently if it’s their full time job. The needs and hours of special needs families also change based on appointments, therapy, medical status. Most paid caregivers cannot be that flexible. Making family members paid caregiver status is essential for the health and welfare of the people on this waiver. We have only been able to find minimally safe caregivers in the summer when teens are home from college. Full adults cannot work for that pay and offer the safe and consistent care this population deserves. I implore you to make this provision for family caregivers permanent so that families who are already strapped with more than anyone should be can plan for their future, make informed career decisions and protect their vulnerable family members. 

Please lift the limitations for LRIs and consumers with LRIs. Our children are 10 (hypotonia, anxiety, sensory processing disorder, feeding issues, migraines, developmental coordination disordero) and 13 years old (autism, ADHD, anxiety, sensory processing disorder, visual spatial processing disorder, feeding issues, etc.) and cannot tolerate strangers attending to their very personal support needs - bathing, menstrual cycle hygiene, assistance with dressing, etc. As their mother and LRI, I am the only one who should be providing this support not only for their emotional well-being and concern for privacy but also for their safety. Background checks are not enough and no one who provides high quality attendant services is going to work for so little pay. I am the best person for their care and the only person. My husband/Their father doesn’t feel comfortable or that it’s appropriate for him to provide this care so I am it. I have tried to work a full-time job and have attendants but the turnover rate and ability to find people forced me to leave my job. However, I NEED respite. We have people who can provide respite but they can’t help since respite hours are frozen. There are opportunities for my husband and I or even just me to have respite weekends through a nonprofit organization but they don’t provide care. We have to come up with respite care to attend these respite weekends. I am burned out. Marriages with children with autism have a divorce rate of 80% (psychologytoday.com). Families NEED to feel their children are safe with them and not strangers coming into our homes tasked with very private and personal attendant care and LRIs NEED respite. Please include support for LRIs to not be capped at 40 hours per week which is only 20 hours for each of my children which is LESS THAN 3 HOURS PER DAY. Who can provide this support for less than 3 hours per day??? Please include respite for LRIs in the budget. We endure the MOST scrutiny compared to other government programs like SNAP and WIC. A majority of families follow the rules and do the right thing. Don’t let a few bad apples spoil this critical support for all of us. We are DROWNING out here!!!

This have been very stressful for families like mine, we have a disabled daughter who needs constant supervision because of her issues. Changes recently have made life stressful, these people working on behalf of the state for agencies like Keypro are incompetent. They don't visit our child they don't understand her condition or needs and somehow their remote doctors and nurses living out of state think they know more than my child's physician who sees her face to face. They are a complete disgrace, why is the state using them to harass disabled children's families and make there lives more difficult. 

We are struggling and we need support. Parents should certainly be allowed to be paid caregivers, if one of them has to stay home to care for a loved one with a difficult condition. It's almost impossible to find competent reliable caregivers at the rates allowed, it's hard work and it's difficult to find people who can are are willing to do it. And when it comes to small children or others who cannot communicate very effectively it becomes a safety concern. There should not be a 40 hour limit on LRI attendants it should be higher maybe 60 hour limit if any limit at all. LRI consumers should not be stripped of Respite. 

There seems to be a push to make things harder for community based service providers and toward companies like KeyPro, that's a huge mistake. Community Based Services are much closer to those who need services and better understand the needs and challenges of those in need. Keypro and others have been absolutely horrible to deal with, they are remote and don't understand needs, don't know those in need or the families. Degree requirements make filling positions difficult at allowed rates this needs to be fixed. Degrees are not needed and place undue burden requirements, and are not a reliable measure of ability or productivity. 

Despite the pay increases recently granted for personal care attendants, their wages still lag significantly behind other jobs, making it difficult if not impossible to find and retain suitable caregivers. In many families, a parent or spouse is forced to miss work or even leave the workforce entirely in order to stand in the gap for their disabled loved one. I urge you to codify permission for LRIs to remain paid caregivers, because families shouldn’t have to choose between securing proper care for their disabled loved ones and financial disaster.