Regional Center, IHSS, and Medi-Cal: UPDATES & FAQs : RESOURCE LIST

These days, we find ourselves navigating an unprecedented situation that has not been anticipated by our laws and institutions. We’ve got a lot of questions about how the pandemic will affect our government benefits and services — and while there aren’t a lot of answers yet, I’ve addressed some of them here.

As you read through the following questions and answers, it’s important to remember that while the state of California is issuing mandatory directives, it has also introduced increased flexibility and fluid guidelines, along with recommendations that may or may not be adopted. Different counties and Regional Centers may take varying approaches to these new guidelines. Ultimately, it may be that nobody at the state or county level has meaningful or definitive answers yet as to how things will unfold on the ground.

Here, you will find some frequently asked questions with answers drawn from directives issued by the various government agencies that serve children and adults with disabilities. As the situation evolves, we will share more information as it becomes available, and discuss what we can reasonably expect right now and what we may have to learn to live with. While we’ll do our best to provide you with the best information available to us, please remember that what you read in these pages not does not constitute legal advice, but is provided to help you make the best decisions for your child — decisions that are ultimately up to you and yours.

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REGIONAL CENTER

I can’t get in touch with my Regional Center service coordinator. What should I do?

It’s important to remember that Regional Centers and individual service coordinators are also struggling with the shelter-in-place order, as many service coordinators have children at home as well. In more rural areas, there are also technological barriers for some service coordinators, and it’s not clear whether those have been adequately addressed so that all coordinators are able to work from home.

That being said, all Regional Centers have an obligation to ensure that their consumers are able to reach their service coordinators. Typically you should expect a two-day response to an email or voicemail, although emergent issues may impact that time frame. If you can’t reach your service coordinator in a reasonable amount of time, or if you have an urgent need that cannot wait for a callback, you can call the Regional Center’s main number and ask to speak with the “officer of the day,” the designated representative responsible for helping people who can’t get in touch with their service coordinators. You can also ask to speak with your coordinator’s supervisor, who will have the same responsibility to assist you. A full directory of Regional Centers is available online. If you are unable to reach anyone at your Regional Center within a reasonable period of time, you may contact the Department of Developmental Services (DDS) at (916) 654-1690.

Can I get extensions or make-ups for missed Regional Center services? Will my child be eligible for compensatory services for respite, ABA, and other services that were not provided during the shelter-in-place order?

Typically, the Regional Center requires that missed services be made up within the same calendar month during which they were missed. It is unclear yet whether Regional Centers now have the flexibility to extend the make-up period. We hear that providers are receiving mixed messages about this as well. 

That being said, many of us are used to thinking about missed services in the context of IEPs, and it’s important to understand that the Regional Center operates a little bit differently. If the school district misses a session last week, the district owes us one session going forward. For Regional Center services, although missed therapy sessions can be made up within the same calendar month they were missed, the law doesn’t require “compensatory services” in the same way that special education law does.

In our recent Q&A webinar with Katie Hornberger, director of the Office of Clients’ Rights Advocacy, Katie suggested that it may be more useful and practical to think of missed services in terms of how their absence impacts present and future needs. Respite, for example, is meant to provide parents with a break from caregiving. Missed hours in one month do not necessarily change the parent’s respite needs in the following month (although we as parents may feel otherwise). On the other hand, missed behavioral, social skills, or other skills-based services can not only delay progress on IPP goals, but can also lead to regressions. Rather than counting the number of hours missed and trying to make them all up later — which may be just as impractical as unlikely to be approved — it might be more useful to think about how the missed hours impact your child’s needs going forward. Maybe they were receiving 20 hours per week of ABA, but in the weeks without services they experienced regressions, and now it will take 25 hours per week going forward in order to make sufficient progress to get back on track. You are more likely to be successful in requesting service increases when you consider your child’s individual needs going forward, rather than just try to make up missed services hour for hour.

Will my in-home ABA services continue under the state’s “shelter at home” orders? Can I receive in-home Regional Center services by video conference instead?

We are hearing from multiple ABA agencies that 1) ABA providers are permitted to continue in-home behavioral therapy under the statewide “shelter at home” order, because they are providing an essential service, but 2) many agencies are allowing both their providers and families to determine whether they feel comfortable continuing face-to-face therapies. We have not seen any formal written guidance at this time, but the state has published a list of essential workers, and behavioral health providers are among them. You can read the state-issued list of “essential critical infrastructure workers” here.

If you prefer not to have therapists in your home at this time, you may be able to receive certain services through video conferencing. The Lanterman Act generally requires certain services to take place in the home or at a specified location. However, DDS has waived this requirement, and will now allow consumers or their parents/guardians to request that services be delivered by video or in an alternate location if they have concerns about exposure to COVID-19. The Regional Centers have already authorized some agencies to provide services remotely.

If you opt for services to be provided via video conferencing, your providers are required to notify the Regional Center beforehand, or no more than seven days after, that you have requested and/or agreed to receive the services by alternate means. The Regional Center must send you a letter to confirm the change, and must include contact information for your child’s service coordinator and supervisor. The change in service delivery method is not a change in frequency or duration of services. You can read the Department of Developmental Services’ directive to Regional Centers here.

Can Regional Center step in and provide services that others are currently not providing, particularly to support education while schools are closed?

The Regional Center is statutorily prohibited from providing educational services that are offered by the school district. As we enter a new school year with most California children preparing for another year of distance learning, it’s worth thinking about how we can reframe our child’s needs so that the Regional Center may be able to assist us within the framework of services they are permitted to provide. OCRA director Katie Hornberger advised that we ask ourselves what goals we are trying to accomplish in order to figure out what services we need. If the issue is that our child needs academic assistance such as tutoring or an in-home teacher in order to progress with the curriculum, that’s likely to be a service the Regional Center is barred from providing. However, if your district is offering distance learning through some form of virtual classroom, and your child requires a 1:1 aide at school in order to attend to tasks, perhaps what you need at home isn’t a tutor per se, but a behavioral aide or personal attendant to help your child sit through online lessons and stay on task. This service is more in line with what the Regional Center typically provides, meaning it’s more likely to be approved, and also there are more likely to be vendored providers ready to step in and provide the service.

We’ve put so much effort into our therapies and I don’t want to lose the hard-won gains we’ve made. What should we do without the help we need right now?

This is something we’re all worried about, and something that Katie Hornberger spoke to at length during the Regional Center and IHSS webinar. We are going to see regression with our children; there is no way around it. We’ll see it with our typically developing children, too — and let’s face it: we’ll see it in ourselves. While there is no magic answer, Katie urges us to remember that we’re doing the best we can under the circumstances, and suggests that we think differently about our goals. We may need to make different, more achievable goals during this time. Later, when this shelter-in-place period is over, we can request reassessments and ask for increased support services to help our children get back to baseline and to their regular routine, as discussed above.

Are due process hearings carrying on in the same way or will they be happening virtually?

At this time, all administrative hearings are taking place as scheduled, either telephonically or by video conference. For updates and further information, you can visit the Office of Administrative Hearing (OAH) website. If you receive a Notice of Action reducing or terminating Regional Center services, be sure to appeal in writing within ten days, and indicate on the appeal form that you would like to receive “aid paid pending appeal” so that the services continue during the appeal process. Note that aid paid pending appeal is not applicable for services ending due to transition from early intervention (0-36 mo) to Lanterman Act services (ages 3+).

I was just about to apply for Regional Center services for my child. Will the Regional Center still accept my application during the closure?

YES. The Regional Center has NOT suspended intakes for new Regional Center consumers. If you believe your child is eligible for Regional Center services, you can absolutely request an intake. The application procedure will, however, be a little bit different. Usually, the Lanterman Act requires an in-person meeting to determine Regional Center eligibility. The newest directive from the Department of Developmental Services (DDS) states that intake meetings, evaluations, and assessments can take place by remote electronic communication as long as the Regional Center determines that the integrity of the intake process will not be compromised.

Following the remote intake process, the Regional Center can declare a client eligible in two ways as a result of this directive. First, the Regional Center may determine that the applicant is definitely eligible as a person with a developmental disability as defined by the Lanterman Act. Second, the Regional Center may determine that the applicant is “presumptively eligible,” which means they are reasonably certain the applicant is eligible, but for some reason related to the remote assessment process, they can’t say with absolute certainty. In that case, the applicant may be treated as eligible for the time being, but if a later reassessment finds that the applicant is not eligible, the Regional Center will not have as steep a burden of proof to demonstrate that their original determination was in error. Due process rights should remain intact, so if the Regional Center says your child is “presumptively eligible” and then rescinds the determination later, you still have the right to appeal their decision, although it is unclear whether your child will be entitled to continuation of services during the appeal process (known formally as “aid paid pending appeal”).

If you are applying for Regional Center services for the first time and already have reports from recent assessments (e.g., from your child’s psychologist, neurologist, developmental pediatrician, PT/Speech/OT, etc.), you should provide copies to the Regional Center to aid in the determination process. The Regional Center may opt to use your recent assessments in conjunction with or instead of its own.

My child is turning three years old. Will Regional Center continue to provide Early Intervention services since the schools are closed?

The Regional Center provides early intervention services to children aged 0-36 months who have been diagnosed with a developmental disability or are at risk of developmental delay. Ordinarily, Regional Center early intervention services terminate the day the child turns three years old, and the school district assumes responsibility for provision of all educational services, including therapies. The Regional Center and the school district are required to coordinate to develop a transition plan and an Individualized Education Program (IEP). After age three, only children with eligible developmental disabilities will continue to qualify for Regional Center services, albeit in a more limited scope since the school district is now a generic resource.

On June 15, 2020, the Department of Developmental Services issued Department Directive 01-061520, which waives for 30 days the requirement that early intervention services cease on the recipient’s third birthday. Additional extensions have been issued by DDS directive. The most recent, DDS Department Directive 01-081020, extends the deadline to September 13, 2020. This directive applies only to children already receiving early intervention services whose third birthday took place during the COVID-19 closures. Regional Centers are still required to continue to work with school districts to facilitate transition from early intervention to district services, but early intervention services may continue during that time.

I owe fees to the Regional Center under the Annual Family Program Fee and/or the Family Cost Participation Program. I can’t afford to pay due to loss of income during the pandemic. What can I do?

The Department of Developmental Services (DDS) has issued a temporary postponement of fee assessment and collection under both family cost-sharing programs. The March 25 DDS directive states, “Retroactive to March 12, 2020, regional centers shall not conduct assessments and families shall not be required to pay costs or fees associated with FCPP or AFPF.” What this means is that no one will be required to pay after March 12, regardless of when they applied. The delay was initially slated to remain in effect for 30 days unless further extended. Per additional DDS directives, the most recent being DDS Department Directive 01-081020, this delay currently expires September 21, 2020.

Since the stated purpose of the directive is “to lessen the economic burden on families and to allow Regional Centers to prioritize work associated with [the] COVID-19 response,” families who have outstanding fees due to the Regional Center and have a recent loss of income due to the pandemic should contact their service coordinators to request an extension. Be aware that these fees will eventually come due in the absence of ongoing extenuating circumstances; the purpose of the directive is to allow Regional Centers to prioritize emergent needs over fee assessment and collection.

IN-HOME SUPPORTIVE SERVICES (IHSS)

I have my annual IHSS in-home reassessment coming up. Will a county worker still be coming to my home?

Typically, counties are required to do in-home, face-to-face visits for both initial eligibility assessments and reassessments. At this time, in-home visits are still required for initial eligibility assessments, but the California Department of Social Services (CDSS) has given counties permission to suspend scheduled reassessments until June 30, 2020. This means that if you are due for your annual reassessment between now and June 30, your county MAY decide to postpone it until the summer. In that scenario, your current hours would continue until the reassessment takes place. Having said that, unless the county tells you otherwise, you should assume that any scheduled in-home visits will still take place.

Counties also have the choice to conduct reassessments via telephone instead of delaying them. However, if a telephone reassessment takes place, any adverse actions taken as a result (e.g., cuts to hours or termination of services) are not allowed to be implemented until after June 30, 2020. You can read CDSS’s March 24 all-county letter on this point here.

Additionally, the state is asking counties to allow recipients some flexibility in scheduling their providers to most effectively meet their needs. This appears to refer to the various hourly work restrictions placed on providers — e.g., those pertaining to overtime, staying below weekly maximum hours, etc. We will provide more information on this topic if another directive is issued. In the meantime, you can read CDSS’s March 19 letter here.

Now that my child’s school is closed, can I request an increase in IHSS hours?

In our Regional Center and IHSS webinar, OCRA director Katie Hornberger advised that your child may be eligible for a temporary increase in hours if your existing hours were discounted because some of your child’s services were being performed at school. Katie used the example of diapering to explain how you might calculate the increase in hours that you are now spending caring for your child. If your child needs to be changed 9 times per day, and 2 of those changes occurred at school, IHSS has likely deducted those two changes from your allowable hours. The same goes for toileting, mealtimes, repositioning, stretching, or any other service your child requires throughout the day that school used to provide — you should be eligible for those hours since you are now the one providing them. Katie advised that you look at the most recent Notice of Action you received from IHSS detailing the services you provide and the hours you receive for those services. Your IHSS form will contain a column indicating “alternate resource time” — hours that the recipient receives services from somebody else. These are the hours that you should now be eligible to receive, and you can make a reasonable argument that you should be paid for that increase in services you are now having to provide.

Katie also pointed out that individual tasks may be taking longer right now than they usually do, partially because our kids are experiencing regressions and anxiety, and partially because everything outside is happening more slowly now. Perhaps your child was cooperating with diaper changes before, but now it takes an extra several minutes to get them to sit still long enough for a change. If you have an adult son or daughter and you get IHSS time to pick up medications for them or take them grocery shopping, perhaps that is taking longer because of social distancing policies. You can review your most recent Notice of Action to see which services you’re being paid to provide and how long each service is usually expected to take.

Don’t be shy about asking for this increase. The California Department of Social Services (CDSS) has issued guidance that says they fully anticipate having to supplement hours, and they’ve authorized overtime pay for social workers during this period because they recognize that many recipients will need to have their IHSS hours reassessed, and social workers will need more time to do these assessments. On a recent statewide call held by the Governor’s Office of Emergency Services / Office of Access and Functional Needs, CDSS stated that the county should be able to pay retroactively to the date the generic service became unavailable.

Katie also shared with us that CDSS has told the advocate community verbally (not in writing) that families can figure out how many more hours they need for the month based on the services not being provided at school or tasks increasing in time, call their social worker to notify them of the child’s change in need, and then start providing those additional services. She added that any call to the social worker should be followed up with a confirming letter to document your request in writing so it’s clear that you’ve made every effort to reach out. Katie did offer some precautionary suggestions, since nothing is guaranteed if it isn’t approved by the agency in writing. Specifically, if you’re a parent provider, you can probably go ahead and begin providing and tracking those additional hours, since you will be providing the service whether or not IHSS approves the increase. However, if you are working with an outside IHSS provider, it would be wise to either think about what you can afford out of pocket if, for whatever reason, IHSS doesn’t approve the change, or else simply wait for authorization before you increase the provider’s hours.

Two important details to note: 1) families who are already receiving maximum monthly hours should not track additional time; 2) please keep in mind that CDSS has not yet issued guidance on what happens when both parents are now home and available (i.e., not looking for work, ill, etc.) due to job loss or suspension. Typically this would cause a disruption in IHSS services. We’ll keep you posted as we know more, and this topic will be addressed under a separate heading.

My spouse is no longer working full-time. Can I still be paid as a parent provider?

Under normal circumstances, if a parent who was working full-time gets laid off or is reduced to part-time status, that would impact the provider-parent’s eligibility to be paid as an IHSS provider. However, the California Department of Social Services (CDSS) postponed enforcement of this provision until June 30, 2020. An additional extension allows counties to delay enforcement until August 3, 2020.

Typically, a parent of a minor child can only be paid as an IHSS provider if 1) s/he is unable to work full-time because of her child’s extraordinary needs, and 2) no other suitable provider who has a legal duty to care for the child (e.g., a parent or legal guardian) is able and available to provide the care. Per All County Letter No. 20-49, parents are considered able unless they are mentally or physically unable to provide the needed service, and they are considered available unless “unavailability occurs during a time the recipient must receive a specific service, due to employment (including parents working from home), enrollment in an educational or vocational training program, or employment searches.” Note that a parent who is working full-time is unavailable regardless of whether they are working remotely or in an office. Many parents have expressed concern that their IHSS hours might be in jeopardy because the working parent is now working from home. This All County Letter should provide some reassurance that CDSS recognizes telecommuters as working parents. 

An earlier letter posted in March, All County Letter No. 20-26, established that although telephonic reassessments may occur during the shelter-at-home period, no adverse actions could be taken until June 30, 2020. In accordance with that order, All County Letter No. 20-49 confirmed that this includes situations where a parent is no longer employed and is therefore available to provide child care. All County Letter No. 20-75, issued July 6, 2020, allows counties to further delay enforcement on this issue until August 3, 2020. You must disclose changes to parent availability during reassessment. The case worker will make a note in the system that the second parent is available, but if your county is delaying enforcement, no action will be taken until August 3, 2020. If that parent returns to full-time employment (or is actively engaged in seeking full-time employment or training/school) before August 3, you should notify the service coordinator (preferably in writing) to avoid disruption in services.

I am my child’s primary caregiver. Who will take care of them if I get sick?

Although typically a Regional Center can respond to an emergent family situation with additional services and supports, in this climate it is unlikely that the Regional Centers will have the resources and staffing to step in when a primary caregiver falls ill. You should develop a plan for what you will do if you do get sick. You may have to rely on family, friends, support circles, and other resources outside of state agencies. If possible, try and identify potential alternate caregivers, and be sure to write down any important information and instructions regarding your child’s daily care — including all of their doctors’ and therapists’ contact information — in the event that nobody can be trained ahead of time.

Note that each county has been working on creating a backup pool of IHSS providers in the instance that a recipient's provider is unable to work. The Personal Assistance Services Council (PASC) of LA County operates a regular backup provider registry that is available for recipients who require at least 25 hours per week of personal care services (this excludes protective supervision). You can reach them at 877-287-6789. However, an IHSS recipient can only receive 20 hours per month of backup services through this service; it is intended to fill emergency gaps and not to be a long-term solution. PASC can also provide referrals for IHSS workers who may be willing to work for a longer period of time, or in case the recipient doesn't have enough hours to qualify for the backup registry.

If parents anticipate that they may become unavailable to provide hours and don’t have a regular backup volunteer caregiver, they may wish to consider asking a friend or extended family member to enroll with IHSS in advance as a backup provider, so that there is a clear care plan if the parent falls ill.

I just got a letter saying that IHSS workers can get up to 80 hours of sick leave. How can I claim this?

We are seeing a lot of misinformation going around about the pandemic-specific sick leave hours that are being made available to IHSS providers. Let’s clear it up right now! As a result of the federal coronavirus legislation, full-time workers can get up to 80 hours of paid sick leave (two weeks of leave), and part-time workers can get the average number of hours they work in a two-week work period. This sick leave is only available for leave associated with the coronavirus pandemic, and is available through December 31, 2020. You must meet one of the following criteria, per CDSS All-County Letter 20-40:

1. “The employee is subject to a quarantine or isolation order;

2. The employee has been advised by a health care provider to self-quarantine

3. The employee is experiencing symptoms of COVID-19 and is seeking a medical diagnosis;

4. The employee is caring for an individual who is subject to a quarantine or isolation order or has been advised to self-quarantine by a health care provider;

5. The employee is caring for his/her child whose school or childcare facilities have been closed, or whose childcare provider is unavailable, due to COVID-19 precautions; or

6. The employee is experiencing any other substantially similar concerns.”

Item #5 has been causing some confusion for parent providers who care for children receiving IHSS. This line generally applies to providers who care for an IHSS recipient outside of their home, but are unable to provide care for that individual because their own children are at home and require childcare. Item #5 does NOT mean that you can claim sick hours on top of your regular hours because your IHSS-recipient child is home from school and you are working more hours to care for them.

However, you may be eligible for COVID-19 sick leave under Item #5 if you are having trouble fulfilling all of your child’s IHSS hours because your other children are home from school due to the pandemic and are requiring more care than usual. In that case, you may hire an outside IHSS provider to perform some of the IHSS services. You may claim sick leave for the hours the other provider works for your child, while the other provider will fill out the regular hourly timesheet. On the July 30 statewide Zoom call held by the Governor’s Office of Emergency Services / Office of Access and Functional Needs, CDSS confirmed that if a parent provider has to hire an outside IHSS provider to assist with fulfilling some IHSS tasks because the parent’s other children are home from school due to COVID-19 closures, the parent may claim sick leave.

A parent provider may also claim these pandemic sick leave hours if they are unable to provide care for their child who receives IHSS because the parent became ill with COVID-19, or because the parent was exposed to COVID-19 and must self-isolate.

Again, parents may wish to consider asking a friend or extended family member to enroll with IHSS as a backup provider in advance if they anticipate that they may need to claim sick leave at some point during the time these hours are available, either for illness/exposure or because of school closures.

I am my child’s IHSS provider. Am I an essential worker? What does that mean?

The California Department of Social Services (CDSS) has issued a letter that, when presented alongside an IHSS paystub, establishes that the bearer is an IHSS provider. You can view and print the letter here. The letter reads as follows: “This letter, along with a pay stub, serves as proof that this person is an In-Home Supportive Services (IHSS) provider. IHSS is a program that keeps aged, blind and disabled Californians safely in their own homes and prevents out-of-home placement in nursing and other long-term care facilities. IHSS providers are responsible to shop for groceries and other items for their recipients, as well as take care of their personal care needs. IHSS providers have been deemed essential by the Governor and as such, are not subject to the shelter-in-place orders if they are performing duties associated with the IHSS program and supporting their recipient.”

This letter was initially intended for use during times and in areas where individuals were subject to a shelter-at-home order, so that IHSS workers could travel to and from work and run errands for their recipient without being at risk of citation, if citations were being issued. Some providers have also been able to use the letter in order to access early shopping hours made available by some businesses for elderly shoppers, shoppers with disabilities, and in some cases, shoppers who are essential workers.

IHSS providers also fall under Tier 2 priority for COVID-19 testing, which includes people with COVID-19 symptoms or a known exposure, as well as individuals without symptoms who meet specific criteria — including individuals who “provide care to an elderly person or a person with a disability in the home, including a person providing care through California's In-Home Supportive Services Program.” (CDPH Updated COVID-19 Testing Guidance, July 14, 2020, last updated August 3, 2020.)

MEDI-CAL AND HEALTHCARE

What should I do if I’ve lost or am at risk of losing my primary insurance?

The State Council on Developmental Disabilities advises: If you have recently lost your employer-sponsored health coverage, you can enroll into a health plan through Covered California. Those who lose their employer-sponsored coverage have 60 days before and 60 days after the date of their coverage loss to come to Covered California and select a new health insurance plan. Once you’ve signed up with Covered California, your coverage can begin on the first day of the following month. More information about Covered California, as well as Medi-Cal for low-income households, can be found here.

If your child is a Regional Center consumer and your family does not qualify for needs-based health care coverage, your child may still be able to enroll in Medi-Cal through the Regional Center’s institutional deeming waiver. To qualify, a child must be living at home with family, have a valid Social Security number, and be ineligible for Medi-Cal due to family income. Additionally, the child must be diagnosed with a developmental disability and have two or more qualifying conditions in the areas of self-help, motor functioning, social/emotional functioning, special health care conditions, or extensive medical needs. Finally, the child must receive at least one funded Regional Center service and utilize that service at least once per year. Many families fulfill this requirement via respite hours. To request enrollment in the waiver program, contact your Regional Center service coordinator.

If your child has Medi-Cal as their secondary insurance and you are at risk of losing your primary insurance in the near future, you may also wish to contact Medi-Cal’s Health Insurance Premium Payment (HIPP) program. Premium assistance may be available if the state feels it would be more cost-effective (e.g., cheaper) for them to pay your private health care premiums rather than have Medi-Cal pay for the care that would usually be provided by your private insurance. The recipients approved for this program are generally individuals with complex medical needs, whose utilization of health care services is significantly higher than average. This program is only available to recipients of fee-for-service Medi-Cal, not managed care. You can learn more about this program and print out the application here. The application can be submitted by fax, email, or mail, and applications generally take 30 days to process once all necessary paperwork is submitted. Please keep in mind that submitting an application is not a guarantee of approval, as each case is assessed for cost-effectiveness.

I’m having trouble finding medical supplies and/or personal protective equipment (PPE). Can any state agency help me?

As we know, there is a nationwide shortage of personal protective equipment (PPE) and other items frequently used in a hospital setting. Unfortunately, many home-health patients already relied on PPE and medical supplies on a daily basis before the start of the pandemic. Medically fragile individuals often need their caregivers to use gloves and/or masks during their shifts, and home ventilator and tracheostomy (“trach”) patients need consistent access to equipment and consumable/disposable supplies associated with their care. Many families have reported having difficulty getting basic supplies that they are usually able to obtain with ease.

Regional Center clients and IHSS providers may be able to obtain masks and gloves from their respective agencies. Per All County Letter 20-61 (June 1, 2020), personal protective equipment (referred to as “Essential Protective Gear” in this letter) is now available to both IHSS providers and IHSS recipients. This supersedes All-County Letter 20-57 (May 19, 2020, making PPE available only to providers) and All County Letter No. 20-41 (April 17, 2020, requiring a known exposure to COVID-19). Supplies are being distributed by the IHSS public authority for each county. The public authority for IHSS providers in LA County is the Personal Assistance Services Council (PASC), which can be reached at (877) 565-4477. You must call in advance to obtain information about location and time for distributions, which are being scheduled about once per week, usually on Saturday mornings between 9AM-1PM, at locations throughout LA County. You may pick up supplies once per month. Providers must bring a paycheck stub from IHSS and their state ID / driver’s license. Providers may pick up PPE for their recipients, and should be prepared to provide the recipient’s name and case number. The providers’ union, SEIU Local 2015, is also distributing PPE, albeit for providers only. Union offices are closed, but you can reach the Member Action Center at (855) 810-2015 or visit the union website at seiu2015.org. You must call in advance to schedule a pickup of supplies. Have your provider number handy before you call.

During a Disability Voices United webinar on April 10, 2020, DVU President/CEO Judy Mark shared that all Regional Centers had been provided with limited quantities of PPE to distribute to households where somebody was exposed to the coronavirus. On June 8, the Department of Developmental Services (DDS) issued a letter to Regional Center Directors stating that PPE is now being distributed to Regional Centers, the State Council on Developmental Disabilities (SCDD), and to community-based organizations. It appears that PPE distribution is no longer limited to those with known exposure to COVID-19. Contact your Regional Center or local SCDD office to locate PPE near you.

Some provider agencies, e.g., ABA and home-health agencies, have also been able to provide their in-home workers with a minimal supply of masks and gloves for use in the home care setting. If your child receives in-home nursing through Medi-Cal, you should request PPE from the home-health agency that employs your child’s nurses.

Equipment supply shortages are also posing a challenge to medically complex individuals, particularly those using trachs, home ventilators, suction machines, and pulse oximeters. We have not heard about shortages of enteral supplies at this time. Families have reported particular difficulties obtaining ventilator supplies, most notably circuits, tubing, and sterile water. During our Q&A webinar with Katie Hornberger, she recommended that families start planning for shortages immediately, even if they are still able to obtain supplies at present. She advised that access to supplies will likely get worse before it gets better. If you are able to make items last longer safely (with guidance from a medical professional) while still ordering refills on schedule, you can build up a small emergency backup supply. Katie recommended that parents speak with the nurses at their child’s health plan or clinic. As many of us have experienced firsthand, nurses often have useful tips and tricks to safely make items last longer, as well as other workarounds, creative approaches, and possibly even some extra supplies or advice about where to get them.

Some families also obtain supplies through medical supply exchange groups on social media. Sometimes individuals have extra supplies and are willing to pass them along, often for only the cost of shipping. You should be aware that these medical supply exchange groups can provide no legal protections if you get faulty or expired supplies, and you enter into any agreements at your own risk. Additionally, during a pandemic, you have no way to control whether the items have been in a household where there has been an exposure. That said, many families do wind up taking advantage of these groups to get supplies they would otherwise not be able to afford or obtain.

HELPFUL LINKS

  • The Department of Developmental Services has devoted an entire section of their website to COVID-19. They’ve also rewritten all of the recent legal changes and directives into plain language for families; you can find that under the tab labeled “individuals and families.”
     
  • You can also check out the CA State Council on Developmental Disabilities’ website, which offers a Plain Language guide to COVID-19 that is written by and for people with disabilities.
     
  • The Department of Social Services has been updating their all-county and all-program letters; things are changing so fast it’s a good idea to stay on top of them.
     
  • The North LA Regional Center has been diligent about sharing updates and useful links via email; Harbor Regional Center has been doing the same.

 

 

Lisa Concoff Kronbeck

Public Benefits Specialist

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