Social law #6

00:00:02: Welcome to Crystal Clear.

00:00:05: In this podcast, we share knowledge and experiences around cystinosis.

00:00:31: Think of it as a practical introduction to social law.

00:00:35: Since we focus on German Law, the specifics may look different where you live but the insights and questions to ask will be valuable no matter were are!

00:00:45: My guest is Jana.

00:00:47: She's a lecturer in Social Law at several universities And holds a master's degree in Psychosocial Counseling & Law.

00:00:55: Her main job is as a civil servant at a German agency providing supported living and integration services.

00:01:02: Jana lives with Cystinosis herself, And brings both personal experience & professional expertise to this conversation.

00:01:09: Hello Jana!

00:01:11: Hello it's great to be here today!

00:01:14: Jana when were you diagnosed with Cystonosis?

00:01:19: As far I can remember...and from what my parents have told me I was diagnosed with cystinosis at the age of two, very early on.

00:01:29: Not would have been around nineteen ninety-two.

00:01:33: back then Very little was known about cystinoses and that Was when it became clear That i

00:01:39: had it.

00:01:40: And how did you end up getting into social law?

00:01:43: That came later actually!I went through school like anyone else and my parents especially My mother always made sure we got as much support as possible.

00:01:54: She was very committed!

00:01:56: We had a civics and law class in school, And before my final exams—my Abitur—I started thinking about what direction I wanted to go.

00:02:05: That's when things started to click for me... ...I applied to several public agencies…and it just so happened that i ended up at one dealing with social-law.

00:02:14: The more I got into The more it resonated with me, so I went on to do a master's in social law.

00:02:21: the professors i had there really reinforced that decision.

00:02:25: Social Law became my thing!

00:02:27: I genuinely enjoy advocating for people who need support.

00:02:30: What

00:02:31: challenges do people with cystinosis and their families typically face?

00:02:36: And what fundamental rights should they know about?

00:02:39: With Cystinosis everything is very individual.

00:02:44: The condition affects each person differently.

00:02:47: That means support can begin right from birth, for example when parents apply for a care level or a disabled.

00:02:54: persons pass for their child and as patients grow older the level of support they may need can grow as well.

00:03:02: but I said it is very individual.

00:03:05: some people may not need any support at all Or They May Simply Not Want It.

00:03:10: And one point that's always important to emphasize Applying for these forms of support is voluntary.

00:03:17: No one is required to apply, These are simply Support options that are available.

00:03:23: So where can people find reliable information and who should they turn to?

00:03:29: Reliable Information is best found at counseling centers but also through self-help groups which offer a great deal of support And Of course you should always reach out the relevant authorities For example, the Long-Term Care Insurance Fund for care related matters or the Health Insurance fund for medical questions.

00:03:51: These agencies have a legal obligation to provide advice.

00:03:55: There is also the EUTB – The Independent Participation Advisory Service which can be an excellent starting point!

00:04:04: The important thing is this You Have To Take The Initiative you have to speak up and say, my child has this condition.

00:04:12: And I want to know what support is available?

00:04:15: Unfortunately, support does not simply fall from the sky—you truly have to look for it!

00:04:21: That's exactly the difficulty many affected people in their families face.

00:04:27: Finding your way through these maze of regulations is hard — having a guide or navigator can make real difference.

00:04:34: counseling centers and the EUTB can take on that role.

00:04:39: How did you personally stay informed, both as a child and now?

00:04:44: As a child in teenager my parents handled most of it.

00:04:48: Now with more legal background I mostly look things up through federal ministries websites

00:04:55: but honestly

00:04:56: huge amount our information came from self-help group.

00:05:00: what i mean is this The real experts are often the people who have the disease themselves.

00:05:06: At family meetings, we would exchange experiences—how did things go for you?

00:05:11: How did you find out about

00:05:13: that?".

00:05:13: That is how we learned and my parents did a lot of the legwork I have to say.

00:05:18: Does social law stay the same or does it change frequently?

00:05:23: Actually, Social Law is one of most dynamic areas of law.

00:05:28: It feels like its constantly changing.

00:05:31: Some things remain constant.

00:05:33: For example, the rules around severe disability do not change as often as say The Citizens Benefit Program but you always have to stay current to give people the right advice.

00:05:44: How Do People Stay On Top Of Changes?

00:05:48: You can sign up for newsletters from organizations self-help groups or associations like VDK and EUTB.

00:05:58: If you sign up for their newsletters, You will generally receive the relevant updates.

00:06:04: But my top recommendation is to Sign Up For The Newsletter From The Federal Ministry Of Health Or The federal ministry of social affairs.

00:06:14: That way you get the latest changes directly.

00:06:18: I'll put the relevant links in show notes so that you can sign-up easily.

00:06:23: And what's

00:06:24: most reliable ways To stay informed going forward?

00:06:29: Signing up for those newsletters is really the key.

00:06:32: The Federal Ministry of Social Affairs, for example sends updates every two to three weeks.

00:06:39: Staying informed is simply essential.

00:06:42: There's no way around it.

00:06:44: Let's get into specifics.

00:06:47: What should people know about care levels?

00:06:50: First, it's important to know that care levels are a benefit under Germany's statutory social long-term care insurance.

00:06:58: That is Social Code of Law Book XI.

00:07:01: People with cystinosis may or not qualify for a care level.

00:07:06: It depends entirely on their individual health situation.

00:07:10: The key thing is you have to apply.

00:07:13: The Long-Term Care Insurance Fund, which is usually part of your health insurance will not come to you and say would like apply for care support.

00:07:21: In Germany you always have to submit an application.

00:07:25: You can now do this online with most providers.

00:07:28: This applies to those with statutory insurances.

00:07:31: If you have private insurance, you apply through a private insurer instead.

00:07:35: Once you apply, a comprehensive assessment process begins looking at your diagnoses and the limitations you experience in daily life.

00:07:44: The assessment is very extensive.

00:07:46: I'll only give a brief overview because you could easily dedicate an entire talk to it.

00:07:51: In short An assessor from the medical service of health insurance funds or medic proof for private insurance will evaluate how independently You can manage daily activities across different areas.

00:08:04: If you'd like to know more, please check the show notes because there are six modules in total each with individual questions.

00:08:11: One important tip submit medical reports along with your application.

00:08:15: There's also an online self-assessment tool You can use beforehand.

00:08:19: The severity of your limitations determines Your care level?

00:08:22: There Are currently five Care levels In total Each With different benefits attached.

00:08:26: For More detail Please Check the Show Notes and the Federal Ministry Of Healths website.

00:08:31: And what about the disabled person's ID?

00:08:35: For anyone unfamiliar with it, The Disabled Person's ID does not describe how impaired a person is or What specific challenges they face in daily life.

00:08:47: It simply indicates that A persons health status differs significantly from That of healthy individual.

00:08:54: and again you have to apply for.

00:08:57: There is now a good online portal for this, which I will link in the show notes.

00:09:02: You can access it through www.viralitindigital.de.

00:09:08: The process varies by region so it adapts to where you live.

00:09:24: They evaluate how far your health condition deviates from the norm and whether it is expected to last longer than six months.

00:09:33: A broken leg, for example would not qualify because it's expected to heal within six months.

00:09:39: There are different grades of disability ranging from thirty-to one hundred plus additional disability markers.

00:09:46: Children with cystinosis can often qualify for certain markers though this varies by state.

00:09:53: One such marker is H, which stands for helpless though that term is misleading.

00:09:58: It simply means the person requires assistance.

00:10:01: I will put all the details in the show notes and the linked PowerPoint presentation.

00:10:06: What does disadvantage compensation?

00:10:09: In our context mean?

00:10:11: it means that a person with a disability receives adjustments to level the playing field.

00:10:18: It is something a person with a disability and a severely disabled persons ID may be entitled to.

00:10:25: In school, for example, accommodations can include extra time or exemptions from certain requirements.

00:10:33: From my own experience I received extended-time on exams And was excused from certain physical activities at school due muscle weakness.

00:10:43: But it's always individual.

00:10:45: These accommodations extend into adulthood as well.

00:10:49: For example, people with a disability grade of fifty or higher are entitled to five additional days of paid vacation per year though if you only work four days a week You would receive for additional days instead and so on.

00:11:04: there is a whole range Of other support options in the show notes.

00:11:08: one important additional point If you need a specially adapted workplace, assistive devices or personal assistant at work subsidies are available.

00:11:19: For example from the integration office of federal employment agency to help people with disabilities participate fully in working life.

00:11:28: What should people know about insurance and financial matters?

00:11:32: One important area is co-payment limits for medications.

00:11:37: Most people with statutory insurance know that you typically pay around five to ten euros per prescription at the pharmacy.

00:11:46: There's a copayment ceiling based on your gross income.

00:11:50: For people with cystinosis, it is important to know that You can register as chronically ill With Your Health Insurance Fund.

00:11:57: If you do... ...your co-payments ceiling Is reduced To just one percent of your Gross Annual Income Rather than The Standard Two Percent.

00:12:06: I'll include the relevant legal references in the show notes.

00:12:10: Many people with cystinosis may also need dialysis at some point, depending on kidney function.

00:12:17: Travel to dialysis appointments is covered by statutory health insurance.

00:12:22: Your doctor needs fill out appropriate prescription form – Form IV in Germany and since dialysis trips happen frequently —at least three times a week— it's important get prior approval from your Health Insurance Fund.

00:12:36: There's also a general provision for reimbursement of travel costs to medical appointments under Social Law Code Book Five, paragraph sixty.

00:12:46: Having a severe disability card with the H marker means travel costs are covered.

00:12:51: A care level of three or higher can also qualify you for travel cost reimbursement.

00:12:57: More details in show notes.

00:12:59: What about tax

00:13:01: benefits?

00:13:02: Right So when it comes to taxes, there are a few things to be aware of.

00:13:08: There is a tax allowance for people with disabilities and this another reason why applying for the severely disabled person's ID is so important.

00:13:18: The amount depends on degree disability – higher grade or allowance.

00:13:24: If your card includes H marker ,the amount increases further.

00:13:29: I will not name specific figures here because they change, but the current amounts.

00:13:54: What

00:13:59: if someone can't find an apprenticeship, or is no longer able to work?

00:14:04: Let's start with the encouraging part.

00:14:07: People with cystinosis can pursue essentially any career they choose even If counselors at job centers sometimes say otherwise.

00:14:17: I was once told i could not do my Job!

00:14:20: I am doing it anyway.

00:14:21: so really fight for your dream.

00:14:24: that Is The Most Important Thing.

00:14:26: If finding an apprenticeship is difficult, there are various support options.

00:14:31: Job centers and the Federal Employment Agency are generally very helpful here.

00:14:36: There also state-level programs.

00:14:39: In Hessin for example ,there's a program called HeyPass that helps people with disabilities enter open job market with appropriate support.

00:14:48: The bottom line Get advice And do not give up.

00:14:52: As for NOT being able to work From what I have seen among older systemosis patients, this is actually not common.

00:15:00: Most of us are actively working but if it does come to that the first step is to explore retraining options through The Federal Employment Agency or a job center.

00:15:10: If someone truly can no longer work at all there's option for applying permanent full disability pension through the Pension Insurance System And in cases of permanent incapacity for work, there are safety nets available.

00:15:27: For example basic income support under social law code book twelve.

00:15:31: Yana what would you like to leave people with?

00:15:34: Patience and families alike?

00:15:37: Know where to look for help... ...and know that your not alone!

00:15:41: There always experts out here who can support you….

00:15:45: …And as a closing thought something I've come truly believe Just as cystinosis is individual, so is the support that's needed.

00:15:56: Please don't treat everyone with cystinosus As if they're the same.

00:16:00: We all need individual support Some more some less but The most important thing Is keep your head up.

00:16:09: we can All do this.

00:16:12: Thank you So much Yana social law expert and advocate for people With Cystinosis.

00:16:20: Here's a summary of everything we cover today.

00:16:23: No agency will come to you on its own.

00:16:26: Benefits must be actively applied for, ideally as early as possible – even for children!

00:16:33: All applications are voluntary.

00:16:36: Two important building blocks is the care level and severely disabled person ID.

00:16:42: The care level is applied for through the Long-Term Care Insurance Fund and depends on how significantly a person's independence is affected.

00:16:51: The severely disabled persons ID, is applied to through the relevant regional authority And can bring concrete advantages such as tax relief and disability accommodations.

00:17:02: People with cystinosis Can register as chronically ill With their health insurance fund.

00:17:08: This reduces the copayment ceiling to one percent of annual gross income.

00:17:13: The maze of regulations can feel overwhelming.

00:17:16: Counseling centers, self-help groups and the Independent Participation Advisory Service at www.

00:17:23: dot tailhababerating .de Can help you find your way!

00:17:28: You are not alone.

00:17:30: there are always experts ready to help.

00:17:33: Thank you for listening.

00:17:34: If you'd like to learn more, the Cystenosis Foundation offers additional podcast episodes and videos with helpful knowledge and practical support for everyday life with cystenosis.

00:17:45: Check them out!

00:17:46: And until next time...