Remove the proposed regulation that requires that providers obtain a professional reference for a nurse aide applicant who has only worked for 1 employer. Providers have found that many employers are unresponsive to reference requests. The requirement will eliminate a percentage of potentially qualified workers because of the inability to get a response from a former employer. Given the shortage of nurse aides this would further limit the pool of potential workers needed to cover cases. We ask that personal references continue to be allowed.

Remove the requirement that nurse aides "physically attend" 12 hours of in-service education anually.Providers should be allowed to continue to utilize printed material and other mediums.  It is effective and sufficient  to require  RN supervisors provide instruction in the home during home visits  when nurse aide deficiencies in knowledge are identified that are recipient specific.

Remove the requirement that signatures times and dates be placed on the record no later than 7 calendar days from the last date of service. In many cases it will be  impossible to comply with standard, and in cases in which the signature cannot be obtained in this time frame, there is no remedy for the provider preventing  the provider from the ability to bill for  services that were appropriately rendered.  For example, the client is hospitalized or leaves town without notice and doesn't return home for many weeks. There are many other examples providers can give in which it takes many weeks and longer to obtain a signature from a recipient.  

Sincerely,

Theresa Packett

Corporate Specialist

As a mother whose son has been on the Technology Assisted Waiver for many years, I’m so thankful that this service is available to him.  However, there are concerns I have around two specific areas of the proposed regulations:

• Children who receive 16 hours of PDN care daily (based on your assessment tool and points system) are typically those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following: 
  
  (5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  I would argue that they are the very children/families who need it the most.  I realize that the options for us now when shifts are missed is to use ‘respite’ hours – but that hardly seems like the intent for respite hours.  (we have had situations where a night nurse has taken ill and had to cancel at the last minute and no replacement nurse could be secured.  Our day nurse for the following day would oftentimes be willing to work a longer shift – usually coming in earlier to give the exhausted parents a break – but this would result in us using more than our allotted 16 hours per day – thus forcing us to use ‘respite’.  Seems terribly wrong that it’s OK for us to miss a shift one day, but not be allowed to make up even a small number of those missed hours the following day – simply because it puts us over the allotted 16 hours per day.)

• My second area of concern is around the restrictions of the daily allotment of hours.  I completely support and agree with the number of hours required for a child based on the point system currently being used.  However, giving families the flexibility to use these hours in a weekly allotment versus a daily allotment would provide significant benefit to families.  My request is to allocate hours to cases on a weekly basis versus a daily basis.  This would allow families to have more flexibility with their hours and use them in a manner that best supports the needs of their child and family.  For example, many families need additional hours during the week when doctor’s appointments, school activities and other responsibilities require more care for their child.  Allowing a family to take more hours during the week and less on the weekend – still not going over the allotted average of 16 hrs/day – 16 hrs x 7 days = 112 hrs.  THIS WOULD NOT COST THE PROGRAM ANY ADDITIONAL MONEY but would give families a tremendous amount of flexibility and allow for the type of nursing coverage that best suits their needs.  While current regulation 12 VAC30-120-90 specifically states the limitation of hours beyond 16 per day, this needs to be re-evaluated as at least one other state (Maryland) has done.  I am also aware of at least one other Medicaid waiver in Virginia that already allows for more than 16 hours per day without requiring respite hours.  I urge the Technology Assisted Waiver to follow suit.

Finally, I am very disappointed that these updated regulations were created without any input from the families whose children are on the waiver.  I would have expected an opportunity to provide input BEFORE something was posted for public comment.  While I understand we have the opportunity to provide our input via this method, it seems odd to me that families who are directly impacted by these changes are afforded the same avenues for comment as the general public.  The next time regulations are being evaluated, you need to solicit recommendations from those who are utilizing the waiver much like nursing agencies were included or consulted in this process.  Why should one group be included and another excluded?  The perception that families don’t have valued ideas or that the ideas of others are more highly valued is insulting.

I strongly urge you to review these recommendations and I welcome the opportunity to discuss them in more detail with you.

Sincerely,

Beth Gillum

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

 I am related friends with a family whose child (Brett Gillum) qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives. Thank you for your understanding.

Mark L. Clark

Thank you for this opportunity to offer opinion and suggestions regarding the waiver.  I am an educator who has worked with families who use the waiver.  In addition, we have a family member and a friend who need and use this important support. It always has made me proud that we offer this to our fellow Virginians who are dealing with such truly difficult situations. In reading over the provision about nursing, I was dismayed to read that there is little to no flexibility regarding the use of nursing hours.  There are instances when a regularly assigned nurse is unable to meet her work obligation due to illness or her own family emergency.  When a family has qualified for 16 hours of nursing support, it means that they need a trained nurse to insure their child's well being in school and in the evening while the family sleeps.  Families with a child with a significant health issue live very demanding and emotionally draining lives. Their children struggle with things that we all take for granted- like breathing or eating.  When a nurse is unable to work the evening shift, the parents must be on continuous duty to insure that life support machines are able to function, that medication is administered, that breathing issues are immediately dealt with, that  seizures are attended to etc, etc etc.  Of course they want to do this for their child but they have already put in a full day at work and have another facing them the next day.  With some flexibility of using the nursing hours, another nurse could be asked to come in earlier so the parent could rest. This solution is cost neutral as you are not paying for the shift of the person who was unable to come to work  but now paying the relief person for additional hours.  I think it is humane to offer parents who are dealing with a seriously compromised child the ability to rest so that they can offer the best quality of care to their child. It is also in the child's best interest to be  afforded  quality care by care givers who are rested and up to the task.  Please consider allowing flexibility in the use of the nursing hours.  It is the right thing to do.

I am friends with the Gillum family whose child (brett Gillum) qualifies for services via the Technology-Assisted Medicaid Waiver. I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies. Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle. As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs. Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home. To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable. This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours. Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families. The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Thank you for your consideration in this matter.

We have some very close friends whose child qualifies for services via the Technology-Assisted Medicaid Waiver. Having seen the benefits the waiver provides for vital needs such as home nursing care and medical supplies, it's an obvious key component in their daily ability to hold steady jobs, manage a household, and create a functional lifestyle. Their work and personal lives are ruled by the nursing schedule set up to care for their child. If a nursing shift is missed it has a huge sweeping impact on their lives and the lives of family members, coworkers, and friends. It's for these reasons I am commenting in hopes of getting some of the restrictions of the Technology-Assisted Medicaid Waiver modified to BEST help these families WITHOUT REQUIRING ADDITIONAL HOURS, RESOURCES, OR FUNDING.

The children/families who receive 16 hours of Private Duty Nursing (PDN) care daily usually have the most involved/complicated medical needs, yet they are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  ??

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home. To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable. This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours. The need for these families to make up missed shifts is no less than those who are already permitted to make up missed shifts (families who receive less than 16 hrs./day of care).

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I emplore you to discuss these comments and allow the families who rely on the Technology-Assisted Medicaid Waiver these minor changes.

Thank you!
 

I agree with Tom Whitsed (my Dad). We have some very close friends whose child qualifies for services via the Technology-Assisted Medicaid Waiver. Having seen the benefits the waiver provides for vital needs such as home nursing care and medical supplies, it's an obvious key component in their daily ability to hold steady jobs, manage a household, and create a functional lifestyle. Their work and personal lives are ruled by the nursing schedule set up to care for their child. If a nursing shift is missed it has a huge sweeping impact on their lives and the lives of family members, coworkers, and friends. It's for these reasons I am commenting in hopes of getting some of the restrictions of the Technology-Assisted Medicaid Waiver modified to BEST help these families WITHOUT REQUIRING ADDITIONAL HOURS, RESOURCES, OR FUNDING.

The children/families who receive 16 hours of Private Duty Nursing (PDN) care daily usually have the most involved/complicated medical needs, yet they are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  ??

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home. To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable. This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours. The need for these families to make up missed shifts is no less than those who are already permitted to make up missed shifts (families who receive less than 16 hrs./day of care).

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I emplore you to discuss these comments and allow the families who rely on the Technology-Assisted Medicaid Waiver these minor changes.

Thank you!

We have some very close friends whose child qualifies for services via the Technology-Assisted Medicaid Waiver. Having seen the benefits the waiver provides for vital needs such as home nursing care and medical supplies, it's an obvious key component in their daily ability to hold steady jobs, manage a household, and create a functional lifestyle. Their work and personal lives are ruled by the nursing schedule set up to care for their child. If a nursing shift is missed it has a huge sweeping impact on their lives and the lives of family members, coworkers, and friends. It's for these reasons I am commenting in hopes of getting some of the restrictions of the Technology-Assisted Medicaid Waiver modified to BEST help these families WITHOUT REQUIRING ADDITIONAL HOURS, RESOURCES, OR FUNDING.

The children/families who receive 16 hours of Private Duty Nursing (PDN) care daily usually have the most involved/complicated medical needs, yet they are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  ??

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home. To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable. This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours. The need for these families to make up missed shifts is no less than those who are already permitted to make up missed shifts (families who receive less than 16 hrs./day of care).

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I emplore you to discuss these comments and allow the families who rely on the Technology-Assisted Medicaid Waiver these minor changes.

Thank you!

I agree with Tom Whitsed (my Dad). We have some very close friends whose child qualifies for services via the Technology-Assisted Medicaid Waiver. Having seen the benefits the waiver provides for vital needs such as home nursing care and medical supplies, it's an obvious key component in their daily ability to hold steady jobs, manage a household, and create a functional lifestyle. Their work and personal lives are ruled by the nursing schedule set up to care for their child. If a nursing shift is missed it has a huge sweeping impact on their lives and the lives of family members, coworkers, and friends. It's for these reasons I am commenting in hopes of getting some of the restrictions of the Technology-Assisted Medicaid Waiver modified to BEST help these families WITHOUT REQUIRING ADDITIONAL HOURS, RESOURCES, OR FUNDING.

The children/families who receive 16 hours of Private Duty Nursing (PDN) care daily usually have the most involved/complicated medical needs, yet they are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  ??

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home. To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable. This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours. The need for these families to make up missed shifts is no less than those who are already permitted to make up missed shifts (families who receive less than 16 hrs./day of care).

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I emplore you to discuss these comments and allow the families who rely on the Technology-Assisted Medicaid Waiver these minor changes.

Thank you!

I agree with Tom Whitsed (my Dad). We have some very close friends whose child qualifies for services via the Technology-Assisted Medicaid Waiver. Having seen the benefits the waiver provides for vital needs such as home nursing care and medical supplies, it's an obvious key component in their daily ability to hold steady jobs, manage a household, and create a functional lifestyle. Their work and personal lives are ruled by the nursing schedule set up to care for their child. If a nursing shift is missed it has a huge sweeping impact on their lives and the lives of family members, coworkers, and friends. It's for these reasons I am commenting in hopes of getting some of the restrictions of the Technology-Assisted Medicaid Waiver modified to BEST help these families WITHOUT REQUIRING ADDITIONAL HOURS, RESOURCES, OR FUNDING.

The children/families who receive 16 hours of Private Duty Nursing (PDN) care daily usually have the most involved/complicated medical needs, yet they are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  ??

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home. To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable. This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours. The need for these families to make up missed shifts is no less than those who are already permitted to make up missed shifts (families who receive less than 16 hrs./day of care).

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I emplore you to discuss these comments and allow the families who rely on the Technology-Assisted Medicaid Waiver these minor changes.

Thank you!

I am friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver. I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies. Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle. As their work and personal life revolve around the nurses who help care for their son, missed nursing shifts have a huge, real impact on their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs. Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home. To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable. This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours. Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families. The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I am friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives. I respectfully request two things that will give these families some flexibility.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

(Continuation of previous message) I hate it when something "submits", before I'm finished.)

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I have been friends with this family for over 15 years and this situation could have a major impact on their them. Thank you for your kind consideration.

Regards,

Mark L. Clark

I am friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives. I respectfully request two things that will give these families some flexibility.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I am friends of the Gillum family, whose child Brett qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.

Thank you for taking a good hard look at this issue.  Please decide in favor of families like the Gillums, whose lives are so affected! 

As the mother of a child with significant medical needs, I understand the vital importance nursing services provide not only to the individual requiring care, but also to the family members in their home.  It is important to first acknowledge that caring for an individual with complicated needs in their home is about three times less expensive than caring for an individual in an institution or nursing home.  Without proper support, individuals who receive services under the Technology Waiver would be forced to live in a nursing home or other institution. 

Nursing services provide necessary care to the individual receiving services under the Technology Waiver; but they also provide an opportunity for family members to work, care for other children, participate in community activities - and save the state money by preventing the placement of medically-needy individuals in nursing homes and preventing families from having to seek additional financial support from other state agencies. 

The proposed language as it relates to nursing hours is very stringent and will place unecessary hardships on families.  The current language allows for only 16 hours a day of nursing services (as opposed to a total weekly allotment of hours) and also does not permit families to make up any hours lost when a nurse is not provided during those allotted 16 hours. Most family members caring for an individual who receives Technology Waiver services work, care for other family members (children), and need to sleep.  Individuals receiving nursing services under the Technoloby Waiver most likely require care overnight; therefore, a nurse is necessary overnight.  The restriction of 16 hours per day of nursing will make it difficult for a family member who works shift work, or odd hours (such as 12 or 16 hour shifts);  it makes  it difficult for a single-parent family and it does not allow a family to provide care as they (and/or their doctor) deem necessary for their loved one.  The family and their case manager are the best individuals to decide WHEN nursing services are necessary - not a general rule restricting the use of hours to a specific number of hours per day.  (Imagine the risk that an individual on a ventilator would be placed in if a family member was forced to stay awake overnight because of a missed nursing shift; and then they were unable to make up that sleep the next morning because they were not permitted to make up the lost hours).  We must also remember that the individuals receiving services under the Technology Waiver are not individuals who can be cared for by anyone - they receive nursing services because they require specialized, trained caregivers.

I highly support changing the current language to allow PDN shifts to be allocated on a weekly basis, rather than on a daily basis to allow families the flexibility of scheduling nursing to meet their needs.  In addition, I would suggest allowing missed shifts to be made up within a set time frame (say, 72 hours) to allow families to catch up on lost sleep, make up hours lost at work, etc.  The proposed changes would not result in any additional costs to the program and will allow for better care of individuals within their community.   Thank you.

The son of my friends qualifies for services via the Technology-Assisted Medicaid Waiver.  Beyond all of the benefits the waiver provides, home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their life essentially revolves around the nurses who help care for Brett, missed nursing shifts have a huge, real impact.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Thank you for your consideration.

“ I am related to/friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.”

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

 Thank you

Please review the requirement that says nurses who work on vent cases must have six months of experience prior to working with a ventilator case.  Currently it is very difficult finding nurses who have  6 months of  ventilator experience.  Previously, it was possible for the Home Health agency that supplies the ventilator to come to the home and train the nurses in the use of the ventilator. 

Please remove the clause about having six months of ventilator experience before working on a ventilator case so that the home health agencies will be able to find nurses to fill the ventilator cases.

Also, there needs to be access to emergency nursing care when parents of children with Tech waivers encounter their own emergencies, such as needing surgery and not having the necessary nursing coverage to last long enough for their recuperation (more than the respite care that is allowed).  Thank you, Karen Jones.

.

I am friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I am friends with and work with some families that have children who qualify for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies. Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for the child, missed nursing shifts have an enormouse impact on their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs. Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home. To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable. This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours. Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families. The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

We are friends with a family (the Gillums) whose child (Brett) qualifies for services via the Technology-Assisted Medicaid Waiver.  We have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Please help. Thank you.

I am friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen first hand the benefits this waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.  We ask that, in general, the waiver allow families to use their nuring hours in a more flexible manner while still staying within the set standard hours.  

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on parents and caregivers.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those families who receive less than 16 hrs./day of care who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I am friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Please take these recommendations into consideration for the sake of the families.  These parents know best how to provide the support needed by their children and family members.

      I have a number of recommendations which should improve the lives of those enrolled in the technology waiver and their caregivers. 

      First and foremost, if all those covered by the technology waiver have not received notification of these proposed rules and their ability to comment then they should be notified and the comment period extended for 30 days from their notification. 

      My specific comments below are predominately focused on four major concerns.  1) That the respite program be more accountable to and for the individual and that the hours be increased to 480 as in other waiver programs. 2) that there be provisions to make up missed hours of skilled PDN.  3) that there be a combined maximum of skilled PDN and PC of 20 hours per day. and 4) that AT be defined as equipment to meet specialized medical needs, perform ADLs and/or improve their function not necessarily be specialized medical equipment.  I am able to discuss in detail the rationale for each comment below but wanted to record all comments within the 3000 word limit.  My e-mail is eadkfreund@aol.com and phone is 571-332-2505

     Specific comments:

1 - Page 12, AT definition - Delete "specialized medical" from the first sentence.  Change "ADLs" to "ADLs and/or IADLs".

2 - Page 13, Congregate private duty respite definition - Change "240" to "480".

3 - Page 16, PC definition -  Change "ADLs" to "ADLs and/or IADLs".

4 - Page 18, Paragraph E - Change "...14 days ... authorized by DMAS and limited..." to "... 21 days per calendar year are allowed.  DMAS shall be notified of all such absences longer than 48 hours in duration.  These absences are limited..."

5 - Page 20, Paragraph 9 - Change second sentence to "The primary caregiver shall be responsible for all hours not provided by a RN or LPN, usually eight or more hours in each 24 period."

6 - Page 22, Paragraph 6d - Add "and scheduling of providers and services"

7 - Page 22, Paragraph 6e - Add "Be provided a monthly report of daily hours and services provided by type of hour and service and by provider.  If any hours or services are not in compliance, be provided an opportunity to correct the record.  The report shall be available by the 15th day of the following month."

8 - Page 23, Paragraph B - Add "PC for adults"  as a covered service.

9 - Page 23, Paragraph c - Add to the end "and where 16 scheduled PDN hours are not completed within a 24 hour period, the hours may be rescheduled and worked within the following 72 hours to support the primary caregiver."

10 - Page 24, Paragraph (6) - Add to the end "and where 16 scheduled PDN hours are not completed within a 24 hour period, the hours may be rescheduled and worked within the following 72 hours to support the primary caregiver."

11 - Page 25, Paragraph (8) - change "i.e." to "e.g"

12 - Page 26, Paragraph d - add "or should the individual be out of the commonwealth for more than 48 hours"

13 - Page 25, Paragraph 2 - Change "240" to "480".

14 - Page 26, Paragraph d - Change "240" to "480".

15 - Page 26, Paragraph 3.a. - Delete "specialized medical" from the first sentence. Change "ADLs" to "ADLs and/or IADLs".

16 - Page 28, paragraph a - Add to the end of the first sentence "and/or safety"

17 - Page 28, paragraph i - Add an additional sentence "However, repairs of the modifications are eligible."

18 - Page 29, paragraph (1) - Delete.

19 - Page 29, Paragraph e.(2) - Change "16" to "20".  Add to the end "and where 20 scheduled PDN and PC hours are not completed within a 24 hour period, the hours may be rescheduled and worked within the following 72 hours to support the primary caregiver."

20 - Page 41, Paragraph B.1 - Delete or update last sentence as it only pertains to 2011.

21 - Page 41, Paragraph B.2 - Add to the first sentence "as covered below".   Delete or update last sentence as it only pertains to 2011.

 I am a grandmother whose grandson qualifies for services via the Technology-Assisted Medicaid Waiver. I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies. Most importantly, my grandson's home nursing care is the key component to his parents' daily ability to hold steady jobs, manage a household and create a functional lifestyle. As their work and personal life revolve around the nurses who help care for my grandson, missed nursing shifts have a huge, real impact on their lives.

As a Pediatric ICU nurse, I took care of many patients who required home care and have had the privilege of getting to know wonderful families such as the Gillums.  In my profession, I am connected with many families who participate in various Medicaid Waiver programs, including the Technology-Assisted Medicaid Waiver.  I have seen firsthand the complex needs of these children, and have great respect for the families who provide this care around the clock at home. Providing the best care to these kids truly requires a team approach, and is too much for any family to handle on their own. The quality of life at home as well as the ability to attend a school setting for many of these children is directly dependent on the daily schedules worked by their home nurses.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

 When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

 In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Thank you!

I am writing in the hopes that you will reevaluate some of the restrictions of the Technology-Assisted Medicaid Waiver to better allow the families on this waiver to use the hours allocated WITHOUT REQUIRING ADDITIONAL HOURS, RESOURCES, OR FUNDING. 

Secondly if all those covered by the technology waiver have not received notification of these proposed rules and their ability to comment then the Department of Medical Assistance Services should notify them by mail and the comment period extended for 45 days from the date the notification is sent to them.

As the Aunt of a child who qualifies for services via the Technology-Assisted Medicaid Waiver, I have seen first-hand the benefits the waiver provides.  The in-home nursing care is a KEY part of the waiver which allows my sister and brother-in-law to hold steady jobs and manage a household all while creating a functional lifestyle.  As their work and personal life revolve around the nurses who help care for my nephew, missed nursing shifts have a huge impact on their lives.  I’m sure you realize and understand that children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved and complicated medical needs.  Yet the families of these children are not afforded the opportunity to have missed shifts made up within a 72 hour period of time because of this one sentence:

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

To withhold from families whose children receive 16 hours of care per day the ‘make up’ hours they deserve is unconscionable.  This limitation should be removed and those cases receiving 16 hours of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than the families receiving less than 16 hours of care each day.

In addition, I strongly recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same.  This small accounting change would allow for families to use the hours they are allocated in the way that best fits their needs and would also allow for minor adjustments to schedules affected by missed shifts.

Thank you for taking the time to read my comments and fully evaluate how these recommendations could make a significant difference in the lives of the families your department supports.

--Susan Schools
Glen Allen, VA

I am friends with a family whose child (Brett Gillim) qualifies for services via the Technology-Assisted Medicaid Waiver. I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies. Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle. As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Thank you for your consideration.

Type oTechnology-Assisted Medicaid Waiver

 I am related friends with a family whose child (Brett Gillum) qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives. Thank you for your understanding.

Ray Kepler

I am friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver. I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies. Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle. As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs. Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home. To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable. This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours. Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families. The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Thank you for your consideration,

Meg Phillips

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

As a grandparent of a child recieving this care, I can assure you that a missed shift more often than not cannot be rescheduled within the 72 hour period and that exceeding the daily limit is often a blessing to parents and other caregivers.  This proposed limitation needs to be reconsidered.

.

I am a Licensed, Private Duty Nurse that is directly connected with many families who participate in various Medicaid Waiver programs, including the Technology-Assisted Medicaid Waiver.  Obviously, the needs of the children and their families who are on these programs are significant. The quality of life at home as well as the ability to attend a school setting for many of these children is directly dependent on the daily schedules worked by their home nurses. 

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

 When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

 In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

As a former nurse of Brett's, I believe these changes are necessary.

I am friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.  Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

As  a pediatrician in a large practice in Fairfax County, I have several patients  receiving nursing assistance under the Technology Assisted Medicaid Waiver. I realize, more than most, that this assistance is vital for  both maintaining the life of each patient for whom the care is given as well as  for  the  sustainment  of the families of these children.In brief, I am suggesting the waiver  regulate the number of private nursing hours/week (112/wk)  rather than nursing hours/ day (16/day x7/wk). By alloting the hours weekly, there could be  flexibility in scheduling for missing shifts and for  different needs of families so totally dependent on this care for their special needs child. Thank you for this consideration.

I have worked in this field for over 25 years providing CSB services to clients and families who daily face incredible challenges.  Many of these families rely on various Medicaid Waiver programs, including the Technology-Assisted Medicaid Waiver.  Obviously, the needs of the children and their families who are on these programs are significant. The quality of life at home as well as the ability to attend a school setting for many of these children is directly dependent on the daily schedules worked by their home nurses.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet despite meeting all required medical necessity criteria these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

" (5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason."

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition,  PDN hours should be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts

I have worked in this field for over 25 years providing CSB services to clients and families who daily face incredible challenges.  Many of these families rely on various Medicaid Waiver programs, including the Technology-Assisted Medicaid Waiver.  Obviously, the needs of the children and their families who are on these programs are significant. The quality of life at home as well as the ability to attend a school setting for many of these children is directly dependent on the daily schedules worked by their home nurses.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet despite meeting all required medical necessity criteria these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

" (5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason."

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition,  PDN hours should be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts

Please consider modification of the PDN allotment for medically fragile children who receive nursing care through a DMAS waiver program.  My son Benjamin, born at 1 pound was not expected to live.  After a 215 day stay in the NICU in Fairfax Inova, Ben came home on August 15, 2001.  Ben is now just a few days away from his 12th birthday!  While he still has his tracheostomy, ventilator, oxygen, g-tube, and feeding pump....Ben is just a typical happy boy.  Nursing care has been a constant in our lives.  While we have always had private insurance, the waiver program has picked up the nursing, which Ben requires 24 hours a day.  If we had the flexibility to use our 16/day of nursing, weekly, instead of daily, it would make up for the last minute changes in schedules that happens so frequently when using agency nursing.  I was widowed a little over three years ago, and as a single parent, having the flexibility to choose how I see best to use the hours for the care of my child should be an option.  

Please consider this heartfelt request,

Joyce Stephansky

Mom to Benjamin Powilatis

I am close friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Thanks in advance for your consideration.

Jeff Miller

I am related to a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.  This family is one of the most caring and loving that I know and I have the utmost respect for them. I know that the flexible home nursing care they currently receive makes a huge impact in their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

 When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

 In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

I am close friends with a family whose child qualifies for services via the Technology-Assisted Medicaid Waiver.  I have seen the benefits the waiver provides, especially vital needs such as home nursing care and medical supplies.  Most importantly, their home nursing care is the key component to their daily ability to hold steady jobs, manage a household and create a functional lifestyle.  As their work and personal life revolve around the nurses who help care for Brett, missed nursing shifts have a huge, real impact on their lives.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

Thanks in advance for your consideration.

Becky H. Miller

In my profession I am connected with many families who participate in various Medicaid Waiver programs, including the Technology-Assisted Medicaid Waiver.  Obviously, the needs of the children and their families who are on these programs are significant. The quality of life at home as well as the ability to attend a school setting for many of these children is directly dependent on the daily schedules worked by their home nurses.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.

We have known of this family for years and know of the care that Brett requires. We are priviledged to know the Gillums and honored to know one of his PDN's, Denise Jacking. The care Brett receives is outstanding and is critical to his success in life. Please consider the family/ families that will be effected by this proposal.

Children who receive 16 hours of Private Duty Nursing (PDN) care daily are among those who have the most involved/complicated medical needs.  Yet these are the children who are not afforded the opportunity to have missed shifts made up within a 72 hour period of time per the following:  

(5) The making up or trading of any missed scheduled shifts, days or hours of care may be done within 72 hours of the missed scheduled shift but the total hours made up, including for any day, shall not exceed 16 hours per day for any reason.

When a PDN shift is missed, there are additional hardships placed on the parents/caregivers in the home.  To suggest that families whose children receive 16 hours of care per day don’t need the ‘make up’ hours is unconscionable.  This limitation should be removed and those cases receiving 16 hrs of PDN should be given the same opportunity to make up missed shifts within 72 hours.  Their need to make up missed shifts is no less than those (families who receive less than 16 hrs./day of care) who are already permitted to make up missed shifts.

In addition, it’s recommended that PDN hours be allocated on a weekly basis in lieu of a daily basis which would allow for increased flexibility to better provide for the varied needs of the recipient families.  The total number of hours used on a weekly basis would remain the same – in this case 112 (16 hrs/day x 7 days/wk), but allow for families to use them in the way that best fits their needs -- this would also allow for minor adjustments to schedules affected by missed shifts.