Conflict & Family Caregivers – What You Need to Know

Providing care for a loved one is a profound commitment, and in Pennsylvania, various programs exist to support family caregivers in this vital role. While Personal Care Assistance (PCA) broadly refers to services that help individuals with daily living activities, its important to understand that paid family caregiving in Pennsylvania primarily operates through specific Medicaid waivers. These initiatives aim to support the invaluable work of caregivers while allowing loved ones to remain in the comfort and familiarity of their own homes or the homes of family members.Understanding Personal Care Assistance (PCA) in PennsylvaniaIn Pennsylvania, Personal Care Assistance (PCA) refers to the services that help individuals with daily living activities and household tasks, enabling them to live independently. Its crucial to differentiate this from Personal Care Homes (PCH), which are residential facilities that provide housing, meals, supervision, and assistance, but typically do not offer third-party reimbursement for family caregivers providing care within them.Instead, paid family caregiving for PCA services in Pennsylvania primarily operates through various Medicaid waivers, also known as Home and Community-Based Services (HCBS) waivers. These waivers are designed to provide direct assistance with Activities of Daily Living (ADLs) and household services for older adults or individuals with disabilities who live in their own homes or the homes of loved ones. The services provided under these waivers are what constitute Personal Care Assistance in the context of paid family caregiving.Key Pennsylvania Medicaid Waivers for PCAPennsylvania offers several Medicaid waivers that facilitate paid family caregiving for Personal Care Assistance, each with specific eligibility criteria and rules regarding family members.1. Community HealthChoices (CHC) Waiver: Getting Paid to Care for Loved OnesThe Community HealthChoices (CHC) waiver is Pennsylvanias most common Medicaid managed care program that facilitates paid family caregiving for PCA. It is designed for individuals aged 21 or older who are eligible for both Medicaid and Medicare and require a nursing facility level of care. This program consolidates several former waivers into a single, comprehensive system and is administered by private healthcare insurance companies contracted by the state.Recipient Eligibility for CHC: To qualify for the CHC program, the individual needing care must meet several criteria: Age: The recipient must be 21 years of age or older. Dual Eligibility: They must be eligible for both Medicaid and Medicare. Functional Eligibility: A physician must certify that the individual has a condition requiring long-term services and supports, specifically an inability to perform essential Activities of Daily Living (ADLs) such as bathing, toileting, or transferring. A trained assessor will also conduct a functional eligibility determination to confirm the level of care needed. Financial Eligibility: The individual must meet specific income and/or asset requirements, determined by the local County Assistance Office (CAO). For example, in 2023, the income limit to qualify for the Pennsylvania Medicaid waiver program under CHC was $2,742 per month. Caregiver Eligibility (Who Can Be Paid, Spousal/Guardian Restrictions): Pennsylvanias Medicaid waivers generally permit family members, such as adult children, siblings, and even friends, to be compensated for providing care. However, under the CHC waiver, spouses (husband or wife) are typically not eligible to be paid caregivers. Similarly, individuals holding Power of Attorney (POA) for the care recipient or legally responsible guardians (such as parents caring for children under 18) are also generally excluded from paid caregiver roles under this program.Application Process: The process involves contacting the Pennsylvania Independent Enrollment Broker (IEB) at 1-877-550-4227, applying on the COMPASS website, and submitting necessary documentation, including physician certification and financial information. Once approved, the care recipient can select a state-licensed home care agency that employs family members, such as Avondale Care Group.Services Covered & How Agencies Facilitate Payments: The CHC waiver covers a range of personal care and home care services. This includes direct assistance with Activities of Daily Living (ADLs) like bathing, dressing, meal preparation, and medication management, as well as various household services. Family caregivers are hired as regular employees of the licensed home care agency, which handles all administrative tasks, including payroll and compliance.Payment Rates & Benefits for Family Caregivers: The compensation for family caregivers through Medicaid waiver programs in Pennsylvania typically ranges between $10 and $15 per hour. The number of hours approved depends on the care recipients health and needs, with a maximum of 35 hours of care per week often allowed. The maximum weekly pay rate for Pennsylvania is up to $700 per week, which aligns with or exceeds these hourly rates, potentially including overtime or other factors. Many agencies also offer additional benefits that significantly enhance the overall compensation package for family caregivers. These can include overtime pay, weekly pay, free Certified Nurse Aide (CNA) training for eligible caregivers, holiday pay (often 1.5 times the regular rate for specified holidays), 401k plans with company matching, company-sponsored healthcare insurance (with substantial premium coverage), flexible schedules, and paid time off.2. OBRA WaiverThe OBRA Waiver is designed to support individuals aged 18-59 who have a severe developmental physical disability and require an Intermediate Care Facility/Other Related Conditions (ICF/ORC) level of care. This program helps these individuals live as independently as possible within their communities by providing assistance with activities of daily living (PCA services).Family Member/Spouse Eligibility: Similar to the CHC waiver, the OBRA waiver excludes spouses or legal guardians from being paid caregivers.Payment Rates: Compensation for caregivers under the OBRA waiver varies by geographic area, typically ranging from $13 to $15 per hour. The maximum weekly pay rate for Pennsylvania is up to $700 per week.Application: The application process also begins by contacting the Independent Enrollment Broker (IEB) at 1-877-550-4227. 3. Consolidated WaiverThe Consolidated Waiver provides support and services to a broader population, including individuals of all ages with an intellectual disability (ID) or autism, as well as children under 22 with a developmental disability due to a medically complex condition. Recipients must be recommended for an intermediate care facility (ICF) level of care based on a medical evaluation.Family Member/Spouse Eligibility: A significant difference with the Consolidated Waiver is that it explicitly allows a friend or family member, including a spouse or legal guardian, to receive payment for care provided.Payment Rates: The average pay for Pennsylvania caregivers under the Consolidated Waiver typically falls between $11 and $14.50 per hour. The maximum weekly pay rate for Pennsylvania is up to $700 per week.Application: To apply for the Consolidated Waiver, individuals should contact the Office of Developmental Programs (ODP) customer line at 1-888-565-9435. Important Considerations: Medicaid Estate Recovery Program (MERP)While Pennsylvanias Medicaid programs offer crucial financial relief for family caregivers, it is essential for families to understand the long-term financial implications. The Medicaid Estate Recovery Program (MERP) is a federal requirement for all state Medicaid programs to seek repayment for long-term care costs after a recipient passes away. This recovery typically applies to individuals aged 55 and older who received Medicaid long-term care services, including those provided through Home and Community-Based Services (HCBS) waivers. Assets subject to recovery can include the deceased recipients primary home, even if it was exempt during their lifetime while receiving benefits. The states claim is generally delayed if there is a surviving spouse, a child under 21, or a child of any age who is blind or permanently disabled. Families may also be able to apply for undue hardship waivers in certain circumstances. Given these potential impacts on family inheritance and assets, it is highly advisable for families to consult with an elder law attorney or financial advisor for personalized guidance on MERP and comprehensive estate planning.  

Pennsylvania offers Medicaid waiver programs under the Community HealthChoices (CHC) umbrella and the Pennsylvania Department of Aging (PDA) Waiver (often referred to as the PA Council on Aging Waiver). These programs help older adults and individuals with physical disabilities remain in their homes or community settings instead of entering nursing facilities. CHC and the PDA Waiver provide long-term services and supports (LTSS) based on assessed functional needs, emphasizing assistance with ADLs and IADLs. Covered services may include personal care assistance, adult day services, home-delivered meals, transportation, home modifications, assistive technology, and respite care for family caregivers. In addition, Pennsylvanias CHC Waiver offers Participant-Directed Services that allow participants to hire and manage their own caregivers, including family members. To qualify, applicants must be Medicaid-eligible, at least 60 years old (for PDA Waiver) or 21+ (for CHC), and require a nursing facility level of care as determined through a standardized functional assessment of ADLs/IADLs. In this article, we explain what Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs) are and how needing help with these tasks is central to qualifying for Pennsylvanias Medicaid waivers like CHC and the PDA Waiver.What Are ADLs (Activities of Daily Living)?Activities of Daily Living (ADLs) are fundamental self-care tasks that a person must perform daily to maintain independence. Difficulty with ADLs often signals a need for supportive services. Core ADLs include: Mobility (Ambulating/Transferring): Safely walking, getting up from a chair, or transferring from a bed to a wheelchair. Dressing: Selecting and putting on appropriate clothing (including handling fasteners) without assistance. Eating: Feeding oneselfusing utensils to get food from a plate to the mouth and consuming it. Personal Hygiene: Bathing or showering and performing grooming activities like shaving, brushing teeth, and combing hair on ones own. Toileting (Continence): Independently using the toiletgetting to the toilet, transferring on and off, and cleaning oneself afterward. When someone can no longer perform several ADLs without help, it indicates that ongoing care or support is likely needed.What Are IADLs (Instrumental Activities of Daily Living)?Instrumental Activities of Daily Living (IADLs) are more complex tasks that allow a person to live independently in the community. While not necessarily performed daily, they are essential for managing ones household and life. Key IADLs include: Shopping for Essentials: The ability to shop for groceries, pick up prescriptions, or purchase clothing and other necessities. Meal Preparation: Planning and cooking mealsgathering ingredients and safely using kitchen appliances. Housekeeping: Keeping the home clean and livable tasks like cleaning, laundry, and taking out the trash. Money Management: Handling finances, such as paying bills on time, managing bank accounts, and budgeting. Transportation: Getting around or arranging transportationdriving oneself or using public transit or rides to run errands and attend appointments. Medication Management: Managing and taking medications properly remembering to take the correct medicines at scheduled times and refilling prescriptions. Communication: Using the phone or computer to communicatelooking up phone numbers, making calls, sending emails, and staying in touch with others. Trouble with IADLs is often one of the first signs that someone needs more support, even if basic ADLs are unaffected.Why ADLs and IADLs Matter for Medicaid Waiver EligibilityIn Pennsylvania, needing help with ADLs and IADLs is a central eligibility criterion for the CHC and PDA Waiver programs. These waivers serve individuals who would otherwise qualify for nursing facility care but prefer to remain in their own homes or community settings. Eligibility is determined through both financial and functional assessments. The functional assessment evaluates whether an individual requires hands-on assistance with ADLs and/or significant help with IADLs, thereby meeting a nursing facility level of care. Pennsylvania uses standardized toolsoften the Pennsylvania LongTerm Care Assessment System (PaLTAS) or the Minimum Data SetHome Care (MDSHC)to score independence in ADLs and IADLs.During the functional evaluation, an assessor reviews abilities such as transferring from bed to chair, walking safely, eating, toileting, meal preparation, housekeeping, medication management, and managing money. Cognitive issuessuch as memory problems due to dementiaare also considered since they impact daily functioning. If an individual cannot perform multiple ADLs without assistance or has significant deficits in IADLs, they are likely to meet the level-of-care requirement and become eligible for waiver services.Community HealthChoices (CHC) WaiverCommunity HealthChoices (CHC) is Pennsylvanias comprehensive HCBS waiver program for individuals aged 21 and older who require a nursing facility level of care. Administered by the Office of Long-Term Living (OLTL), CHC is a managed care program that combines physical health, long-term services and supports, and pharmacy benefits under a single plan (with behavioral health carved out). To qualify for CHC: Be age 21 or older. Meet Medicaid financial eligibility guidelines. Require a nursing facility level of care (confirmed through functional assessment). Live in a setting that meets HCBS requirements (e.g., home, apartment, assisted living). Be a Pennsylvania resident. Once enrolled, participants receive a comprehensive package of services tailored to their needs. Covered services may include personal assistance, home-delivered meals, adult day services, behavioral support, professional nursing, home modifications, assistive technology, transportation, and respite care. CHC also offers Participant-Directed Services, allowing participants to recruit, hire, train, and supervise their own caregiversoften family membersto assist with ADLs (bathing, dressing, toileting) and IADLs (meal preparation, medication reminders).PDA Waiver (Council on Aging Waiver)The Pennsylvania Department of Aging (PDA) Waiver, also called the Council on Aging Waiver, serves seniors aged 60 and over who require nursing facility level of care but choose to remain at home or in other community-based settings like domiciliary care homes. To qualify: Be age 60 or older. Meet Medicaid financial eligibility requirements. Be assessed as requiring nursing facility level of care (through the functional assessment). Live in a qualifying community setting. Covered services under the PDA Waiver may include personal care assistance, home-delivered meals, homemaker services, personal emergency response systems, respite care, adult day services, minor home modifications, and transportation. Like CHC, the PDA Waiver emphasizes managing ADL and IADL needs to keep participants safely in their homes.Participant-Directed ServicesBoth CHC and the PDA Waiver offer Participant-Directed Services, which empower participants to choose and manage their own caregivers, including family members, friends, or neighbors. Under this model, participants develop a service plan with guidance from a care coordinator, set schedules, and handle payroll tasks. This flexibility helps ensure that personal care and IADL support align with participants preferences and routines.Signs That Your Loved One May QualifyBelow are practical indicators that someone may be eligible for Pennsylvanias CHC or PDA Waiver due to difficulty with ADLs and IADLs: Trouble with Personal Care: Skipping showers, unkempt hair, or wearing dirty clothes may indicate difficulties with bathing and dressing (ADLs). Malnutrition or Weight Loss: An empty fridge or significant weight loss suggests issues with meal prep or feeding oneself (ADLs/IADLs). Mobility Decline and Falls: Struggling to walk without assistance, needing help to stand, or experiencing frequent falls signals reduced mobility (ADL: transferring/ambulating). Medication Errors and Memory Problems: Missing doses, mixing up pills, or forgetting appointments point to challenges with medication management and scheduling (IADLs). Household Neglect: Piles of mail, unpaid bills, or a cluttered home reflect trouble with housekeeping and money management (IADLs). A combination of needing help with several ADLslike bathing and toiletingand difficulties with IADLssuch as meal prep and housekeepingstrongly indicates a nursing facility level of care. Document these challenges for the functional assessment to demonstrate eligibility.Were Here to Help: Next Steps and Contact InformationNavigating Pennsylvanias Medicaid waiver programs can be complex, but you dont have to go it alone. At Passion to Care, we specialize in guiding Pennsylvania families through the CHC and PDA Waiver application processesfrom the initial functional assessment of ADLs and IADLs to completing paperwork and coordinating services once approved. If you notice your loved one struggling with daily tasks or if a professional has recommended nursing facility care, it may be time to explore CHC or the PDA Waiver. Our compassionate, family-first team ensures your loved ones needs are met with dignity and respect. Call us or contact us today to learn how to get started with Pennsylvanias Medicaid waivers for home and community-based services.